So now for a true "someday moment" the surgery. We headed in to the hospital at 6:30am, and after picking up coffee for me (he can't eat or drink due to surgery) headed in. We first went to radiology for the MRA (head scan.) This was one part of the hospital I had spent some time in from my two pregnancys and even though it had been fully remodeled it was nice being in an area I recognized. They took him off, and I played games on his iPhone. After several minutes he returned with the "yep I have a brain" joke fresh on his lips. Oh if all hospital visits could be so easy. From there we went to wait for two hours until his surgery appointment time. Its strange to be in the hospital so early in the morning. There weren't many people around and in some ways it felt like we were all alone.
We sat and pulled out the lap top, logged into wifi and watched videos, chatted and tried not to get nervous. I now wonder how nervous I actually was, how much was I hiding even from myself. I sat with Rob holding hands waiting till they called our name, his name. That two hours felt like an eternity, at least at that point. We then went to a different type of waiting room. He changed into his gown and we were in this land of medical cubicles. He laid in his bed and I sat with his bag of "stuff" clothes etc waiting. There was the usual slew of doctors and nurses asking questions making sure we understood everything, and checking his vitals etc. Of all the places I've ever been in the hospital this I think was the must uncomfortable, I have never felt more in the way. I knew Rob needed me there, and I needed to keep him in my sight as much as possible for as long as possible, but I was always scooting to a different corner so they could get him extra blankets, socks, vitals, etc. Then they asked me to leave. It wasn't time for the surgery it was time for the anesthesia and since there were so many going to be involved I was asked to leave. I stepped out for a few minutes, and paced till I was allowed back in. I don't understand why it was so nerve wracking I was going back in as soon as they had numbed his arm. The goal was to make it so he wouldn't be able to move his arm during surgery since he still had a slight cough. The anesthesiologist came to get me from the waiting room and brought me back. There was Rob was looking a bit loopy, tired which was different from when I had left him 15 minutes before. His arm was blue and there were still several people around him (oh the joys of a teaching hospital so many people.) It was interesting because even though they had brought me back to the cubicle, they were still working on him. He wasn't totally numbed yet so they added another blocker, and then were ready to move him to surgery. It felt slightly off that I had been asked to leave, and yet brought back prior to the end of the procedure. I wasn't going to complain I wanted to be with him as much as possible, but still it was odd. The technicians who wheeled him away let me walk with them. Though I doubt he actually knew I was still there, I did and it made me feel a little better.
As we walked down the hall, I said I was going to go on to the coffee shop and grab a bite to eat. The technician very politely started to tell me where to go. I smiled and let him know I knew where I was had spent plenty of time at the hospital and not to worry about me. His response was "oh, I'm sorry." I was surprised by this reaction. In my mind all of my visits up until December had been happy ones, the birth of my children. I hadn't viewed the hospital as a negative or depressing place to be. I still don't, it is a necessary evil in a way, and yet I don't really think of it as evil. Even though we have several surgeries and hospital stays in front of us, it is with a positive outlook, we are giving Rob more life! I can see how some people can't stand to be in hospitals, but for me I wasn't there and I hope I never get to that place.
I watched Rob go through the double doors for his surgery, and headed up to grab my food, and then back to the waiting room. It was supposed to be a "quick" surgery only a couple of hours. I set up my food, the laptop with Facebook to keep everyone up to date, and waited for my friend to call. My best friend during the start of this was in Bolivia. I had sent her a message about what was going on, and the first thing she did was call me. She typically goes to Bolivia for several months a year (family is there) and so I was surprised at the call, grateful because I didn't have to pretend to be strong for her. She was the one who decided we were going to talk while Rob was in surgery. She knew I would need the distraction more than I did. We talked about nothing for two hours. In the waiting room there were others who had friends wait, books, computers, knitting. We were all in the same boat, trying to mind the time before we would hear the outcome of what happened. It is such an intense feeling of helplessness. We continued to chat so that I didn't understand that I was experiencing this feeling at first. Right at the two hour mark I started to watch the clock. This was completely sub conscience. I just found myself looking at the time every minute or so, and then looking for the surgeon. Where was he, it was time for Rob to be done and me to be able to see him again. The time kept ticking by with no word. I was still talking with my friend, but I was slowly becoming very aware of time passing. Suddenly I saw the surgeon making his way to me. I quickly get off the phone and with my heart in my throat, remembering that in some ways this was the long shot option. He smiled and said everything went great. It was a very smooth surgery and I should see Rob soon. That because of how small everything was, not to worry if I couldn't feel the thrill right away, he had a hard time finding it as well, and used a ultra sound to make sure everything looked good. I was stoked, I packed the computer, pulled my bag over my shoulder and waited, and waited, and . . . .
Ten minutes, twenty minutes. I got the computer out to complain on facebook (the only outlet I could think of) thirty minutes, forty. I had seen other surgeons come talked to families and those families head back. I was a wreck. I paced that room with out getting to far away from the door (a very small space.) Finally a nurse came out to get me. I came back and Rob looked wiped out. He was nauseous, even though he hadn't eaten all day (it was now 5pm) he was excited because Dr. Muczynski had dropped off the letter I needed for work, and listened to his fistula with a big smile on her face. So the nurse and I fed Rob crackers yogurt and cranberry juice. Robs arm was still so numb he had no control over it. With everything that happened that was what really freaked Rob out. We started to get everything together and I began to understand why it had taken so long for me be allowed back. The anaesthesia really worked on him, he was loopy, and yet stressed at the same time. The nurse asked if I knew what I was looking for since we needed to make sure the thrill didn't go away. I said I had a good idea, but that I knew it was weak. She went to show me, and couldn't find it. She grabbed a stethoscope and listened for it. When she found it she then marked his arm with a sharpie so I would know where to feel. The thrill is litteraly a buzzing feeling under the skin near the crux of his elbow.
We had to put a sling on Rob so that he wouldn't move his arm especially in his sleep since he still had no control over it. I had to help put his shirt on, his shoes etc since his arm was for all intense and purpose paralyzed. A volunteer came and helped put Rob in a wheelchair and I drove back to my parents. We were supposed to go home that night, it was the 23rd and we still needed to put the final touches on our Christmas plan. The boy's especially Owen was so excited, and I had a large amount of guilt as my parents are Jehovah's Witnesses, and so we had asked Owen not to talk about what was coming up in respect for their beliefs. It felt very unfair to have a 6 year old have to keep his excitement about Christmas in check. But when Rob and I arrived there was no way we were going to make it home. Just the drive to my parents house had wiped him out more if that was possible. It was dinner time, and Rob was in no shape to move again. We got him situated, ordered food, and stayed the extra night. I knew it was an imposition, but my mom was gracious, and as I tucked Rob into bed that night, explaining to the boy's what was going on, I on a whim felt for the thrill. I didn't think I would feel it after everything the surgeon had said, and what had happened in the hospital when the nurse couldn't feel it. But there it was, the vibration so strong, it was his Christmas Fistula. I was shocked and yelled for my mom (the nurse) to come feel. It was totally that "oh that's weird you got to feel this" moment. With everything that happened that day it was a good way to end. The thrill was there, we had made progress, this someday moment had passed successfully, and we now could take a breath and enjoy some family time. Some of the urgency had passed. Yes the fistula had to mature and would take three or four months, but it was in.
NEXT UP: Getting to know our local emergency room.
Wednesday, October 10, 2012
Thursday, September 20, 2012
Life
I've been working on a post about our first surgery for almost two weeks now. Its not that its hard to write, its not that I've had a hard time remembering whats going on. Its just life keeps getting in the way. I find I haven't had the time to sit down and complete my final re read/edit of the post. As a mom I expected this would get hard at times. The only thing is I'm not JUST a mom, I don't JUST work full time, I don't JUST take care of my husband, I don't JUST take care of the house. Sadly I don't JUST write. There are only 168 hours in a week, and they have so quickly filled up. I want to write out what's has been happening and its been really good for my brain and I find myself actually processing what has been going on. Yet the last month or so have been extremely difficult. My husband broke his foot at the start of his busy season. For the last two weeks he hasn't been able to put weight on it. Its amazing how something so small has the rippling affect over everything. Getting our oldest to school, getting Rob to dialysis, just getting the laundry done. Everything has been thrown off. Then we found out my fathers cancer is much more serious than originally thought. The only way my head has been able to deal with that is think about how its going to affect the child care surrounding our hospital stay this November when Rob has his kidney's removed. Every time I've thought of other parts, my world starts to crumble. I know they say you are never given more than you can handle, but I REALLY want to know who gets to determine what is how much. So come Monday we'll learn if Rob can once again walk with out crutches, and hopefully some of our normal routine will return and I will get back to the story.
Thursday, August 30, 2012
Fistula
Its interesting to me how vivid some parts of the past few months are to me, and how some just meld together. The next section of this story is one of those times that get mushy in my head, what happened when is a bit fuzzy but there are parts that still stand out. We were in such a tizzy trying to scramble and catch up mentally as well as physically and I have this tendency to go into what I call "nurse mode" My mother being a nurse I have this knee jerk reaction to go straight into the emergency mode and solve the problem only to break down once the emergency was over. In this case the emergency wasn't over for a long while and I found myself staying in "nurse mode." I looked at everything more clinically, and approached food, recreation, work, in a different mind set. In some ways it was like an out of body experience. I knew I should be freaking out, I knew that this was a big deal, but that wasn't my job. I was supposed to be holding it all together for the family, for work, for our friends everyone needed their chance freak out, my time would be later. This was the small surgery in the long run, we had at least two more BIG ones to get through. I approached this week of activity more relaxed than I think people expected me to be. I was ready for anything, or so I thought.
So what is a fistula????? In short its a vein that is surgically attached to an artery that becomes over time the access for dialysis. This was one of the many new terms I had started to learn in this crash course we were going through. While we had been in the hospital they had actually done an ultra sound on his arm already mapping his arteries and veins in order to find the best place to put in this eventually life saving fistula. They ended up only mapping one arm because they seemed to have found what they were looking for. Rob was happy because he has "garden hoses for veins" so we had a sense of confidence that this was going to be easy, well easyish. The big change in how we moved forward is that he wasn't allowed to have shots, blood draws, or IV's in his left arm any more, it was reserved for his fistula. As we left Dr. Muczynski's office from that first appointment we not only set up our monthly appointments to check in with her, but scheduled his surgery, as well as the slew of pre surgery appointments. We also wanted to get a head start on his transplant paperwork so had an MRA scheduled since PKD patients also have brain aneurism tendency.
Tuesdays were pre surgery appointments. I was nervous about taking more time off work, but thankfully my team understood. I needed to be at these appointments, I am Rob's advocate. So back to the hospital we go. We get back to the room for the consult and start learning more and more. One of the issues that I had seen was his creatinine number was creeping up again (it had risen from a 7 to an 8.) The student doctor that was giving us the pre pre exam before the surgeon came in was going over the basics of what a fistula was for, why were we there, how much did we understand etc (the same stuff we had just gone over with Muszynski, as well as the other doctors we had seen over the last two weeks) I understood why, the need to verify stories, hear it from the horses mouth, but I was getting tired of repeating ourselves. I finally got the courage to ask this doctor about the creatinine number and how quickly it seemed to be rising. I knew that Muszynski was going to let it rise more but waching it get higher in such a short time worried me, it meant even less kidney function then when we started this ride two weeks ago. He looked at me and said "the jump between 7 and 9 isn't as bad as the jump between 3-5" HUH wait a second how can that jump not be as bad? I obviously looked confused because he searched for paper and proceeded to show me a bell curve. I was good at science back in the day (school seems so long ago) but as soon as he took the time to draw the curve and show me where 3, 5, 7,and 9 were on the curve I got it, it clicked. This poor no name doctor was my hero of the moment, I finally had something explained in my language It was such a relief to understand this one seemingly small thing it started to take the worry out of everything.
Then the rest of the "team" arrived. We were in this TINY room with 4 other people the most important being Dr. Sweet, the surgeon. It was a bit intense looking at all those faces and trying to know what questions to ask. One of the biggest concerns raised is that even though this was "minor" surgery was lifting. Again Rob's job tends to be a lot of lifting and moving of things and we were told he wouldn't be able to lift more than a milk carton for at least 6 weeks. This was scary, and again I watched Rob start to check out, he was thinking about what gig's he had already booked, and how he could work around this new wrinkle in our lives. We also wanted to know if this was a permenant change did this affect the rest of his career? What interested me most was watching the doctors. Dr. Sweet, like Dr Muszynski before, also saw Rob's head go somewhere else and suddenly it was all about me. The rest of the appointment the information was focused in my direction, and I was the one who would bring in Rob if I was unsure of a question. Dr. Sweet's biggest concern was that the artery they were choosing wasn't ideal. SURPRISE! Rob's "garden hole veins" weren't the perfect fit we thought. The size was only slightly smaller than ideal, and since Rob is younger, and in good shape the Dr. Sweet decided it was the best one to try first. If this surgery didn't succeed there was another option within the same area that we would go in for at least one if not to additional surgery's to get set up. The only problem with solution number two is that no one thought we had enough time for the fistula to mature and if we had to go that route we would probably need a neck catheter as well. Fistulas need at least 3 months and preferably 6 months or more to mature. This matureity is for there to be high enough flow, and stronger walls. As we got to know Dr. Sweet, we learned he was an optimist through pessimism which is right in Rob's wheel house. There was a point I was really worried that we were going in to a doomed surgery, that's when Dr. Sweet finally said, "I wouldn't try this if I didn't think it had a good chance of success!" We got through the basics of the pre talk, and what I remember most (besides the pessimism) was the emphasis on how this was going to be Rob's life line. The importance of protecting the arm and knowing that there are only 4-5 chances at creating a fistula in the body. This surgery was as life saving as the transplant sugery was going to be.
Once Dr. Sweet was done he left the room with most everyone except are sweet young girl who went over the basics of what to do prior (washing, what not to eat etc) as well as making sure Rob had a driver to take him home and the basic out patient surgery information. One thing that hospitals LOVE is booklets of info, which as a conservation minded person and some one who works for a conservation organization that much paper was a bit excessive. We kept getting booklets upon booklets on every topic that might be relevant to our situation. This was no exception. We were handed the booklet for surgery and she even showed us the couple of pages we actually need to look over since she knew people rarely actually read the entire booklet. Finally we were done . . . with the surgeons team. We still had to go to the pre-anesthesiologist. appointment. We looked at paperwork, grabbed a quick bite to eat, and sat in another waiting room.
This time the waiting room was empty, and we were called back fairly quickly. We went over the same questions again, what surgery's has he had before any reaction to anesthesia before only this time it was with a nurse. While we were in the room Rob had a slight cough. Since he had been given a flu shot and the super influenza shot while we were in the hospital, he had had the cough. To be honest, its Rob, he ALWAYS has a cough. The nurse looked at him and asked if he was sick. We explained the situation of the immunizations and she basically said we should postpone the surgery. I was in shock after the urgency that had been drilled into us by every doctor and nurse we had seen over the last two weeks to be treated in this way didn't fit. Both Rob and I said no, but she wouldn't back down. She checked his temperature (which was normal) and then stepped out to talk with the anesthesiologist. I looked at Rob and I was fuming, this wasn't happening. He smiled in an attempt to calm me down. We heard the Nurse talking to the anesthesiologist, and when she returned she told us that we were going to cancel the surgery since its an elective one, and reschedule after Rob's cough had subsided. It took everything in my power not to jump out of my chair and punch her in the face. I was so mad, how dare you tell me its elective surgery. I responded "no we are having this surgery" and Rob could tell I was losing it It was his turn to take over the conversation. She then asked should I page your Doctor and explain the situation? I was vehemently nodding my head, "Yes please" with the most forced grin I've ever had. She proceeded to call the surgeon and then in the uncomfortable silence that followed waiting for him to call back she tried to explain that with a cough they couldn't do the delicate work on veins/arteries. There was to much potential that he would move and then botch the surgery. I just sat there in my head still seething about the elective surgery comment. The one shining momment in this was that Dr. Sweet called back right away and I got to hear him set the Nurse straight. First he asked if Rob was running a fever.
"No"
"How often is he coughing?"
"Not that often,"
"Then we are doing the surgery"
"But with the cough"
"WE ARE DOING THE SURGERY"
"oh, okay"
She hung up the phone and then as if we couldn't hear said, well your surgeon wants to continue with the surgery, but if you start running a fever let us know right away. With that the appointment was done. We never met the anesthelogist she left the room, I couldn't stop grinning and we headed out. It wasn't until the surgery day that I thought it odd we hadn't met the anesthesilogist. I actually went back to work to wrap some things up since it was so close to Christmas and I had an event not 4 day's away. I was still fuming even though the nurse had been put in her place. I had never felt such a primal anger before. I was glad she was someone we never had to deal with again, or at least not to this point.
So we were set, Surgery was in two days, we were going to spend the night with the Grandparents and leave REALLY early in the morning. Just take a quick breath, the hard part is still ahead.
In a quick foot note, the surgeon actually called us that night to check in see if Rob was still okay, and let us know that in a normal world the fistula procedure is consiedered more elective, most people are getting it much earlier when they still have 20-25 percent of kidney function so that it has enough time to mature. We didn't have the luxury of knowing how long that 8 percent would hold out.
Next up: THE FIRST SURGERY
So what is a fistula????? In short its a vein that is surgically attached to an artery that becomes over time the access for dialysis. This was one of the many new terms I had started to learn in this crash course we were going through. While we had been in the hospital they had actually done an ultra sound on his arm already mapping his arteries and veins in order to find the best place to put in this eventually life saving fistula. They ended up only mapping one arm because they seemed to have found what they were looking for. Rob was happy because he has "garden hoses for veins" so we had a sense of confidence that this was going to be easy, well easyish. The big change in how we moved forward is that he wasn't allowed to have shots, blood draws, or IV's in his left arm any more, it was reserved for his fistula. As we left Dr. Muczynski's office from that first appointment we not only set up our monthly appointments to check in with her, but scheduled his surgery, as well as the slew of pre surgery appointments. We also wanted to get a head start on his transplant paperwork so had an MRA scheduled since PKD patients also have brain aneurism tendency.
Tuesdays were pre surgery appointments. I was nervous about taking more time off work, but thankfully my team understood. I needed to be at these appointments, I am Rob's advocate. So back to the hospital we go. We get back to the room for the consult and start learning more and more. One of the issues that I had seen was his creatinine number was creeping up again (it had risen from a 7 to an 8.) The student doctor that was giving us the pre pre exam before the surgeon came in was going over the basics of what a fistula was for, why were we there, how much did we understand etc (the same stuff we had just gone over with Muszynski, as well as the other doctors we had seen over the last two weeks) I understood why, the need to verify stories, hear it from the horses mouth, but I was getting tired of repeating ourselves. I finally got the courage to ask this doctor about the creatinine number and how quickly it seemed to be rising. I knew that Muszynski was going to let it rise more but waching it get higher in such a short time worried me, it meant even less kidney function then when we started this ride two weeks ago. He looked at me and said "the jump between 7 and 9 isn't as bad as the jump between 3-5" HUH wait a second how can that jump not be as bad? I obviously looked confused because he searched for paper and proceeded to show me a bell curve. I was good at science back in the day (school seems so long ago) but as soon as he took the time to draw the curve and show me where 3, 5, 7,and 9 were on the curve I got it, it clicked. This poor no name doctor was my hero of the moment, I finally had something explained in my language It was such a relief to understand this one seemingly small thing it started to take the worry out of everything.
Then the rest of the "team" arrived. We were in this TINY room with 4 other people the most important being Dr. Sweet, the surgeon. It was a bit intense looking at all those faces and trying to know what questions to ask. One of the biggest concerns raised is that even though this was "minor" surgery was lifting. Again Rob's job tends to be a lot of lifting and moving of things and we were told he wouldn't be able to lift more than a milk carton for at least 6 weeks. This was scary, and again I watched Rob start to check out, he was thinking about what gig's he had already booked, and how he could work around this new wrinkle in our lives. We also wanted to know if this was a permenant change did this affect the rest of his career? What interested me most was watching the doctors. Dr. Sweet, like Dr Muszynski before, also saw Rob's head go somewhere else and suddenly it was all about me. The rest of the appointment the information was focused in my direction, and I was the one who would bring in Rob if I was unsure of a question. Dr. Sweet's biggest concern was that the artery they were choosing wasn't ideal. SURPRISE! Rob's "garden hole veins" weren't the perfect fit we thought. The size was only slightly smaller than ideal, and since Rob is younger, and in good shape the Dr. Sweet decided it was the best one to try first. If this surgery didn't succeed there was another option within the same area that we would go in for at least one if not to additional surgery's to get set up. The only problem with solution number two is that no one thought we had enough time for the fistula to mature and if we had to go that route we would probably need a neck catheter as well. Fistulas need at least 3 months and preferably 6 months or more to mature. This matureity is for there to be high enough flow, and stronger walls. As we got to know Dr. Sweet, we learned he was an optimist through pessimism which is right in Rob's wheel house. There was a point I was really worried that we were going in to a doomed surgery, that's when Dr. Sweet finally said, "I wouldn't try this if I didn't think it had a good chance of success!" We got through the basics of the pre talk, and what I remember most (besides the pessimism) was the emphasis on how this was going to be Rob's life line. The importance of protecting the arm and knowing that there are only 4-5 chances at creating a fistula in the body. This surgery was as life saving as the transplant sugery was going to be.
Once Dr. Sweet was done he left the room with most everyone except are sweet young girl who went over the basics of what to do prior (washing, what not to eat etc) as well as making sure Rob had a driver to take him home and the basic out patient surgery information. One thing that hospitals LOVE is booklets of info, which as a conservation minded person and some one who works for a conservation organization that much paper was a bit excessive. We kept getting booklets upon booklets on every topic that might be relevant to our situation. This was no exception. We were handed the booklet for surgery and she even showed us the couple of pages we actually need to look over since she knew people rarely actually read the entire booklet. Finally we were done . . . with the surgeons team. We still had to go to the pre-anesthesiologist. appointment. We looked at paperwork, grabbed a quick bite to eat, and sat in another waiting room.
This time the waiting room was empty, and we were called back fairly quickly. We went over the same questions again, what surgery's has he had before any reaction to anesthesia before only this time it was with a nurse. While we were in the room Rob had a slight cough. Since he had been given a flu shot and the super influenza shot while we were in the hospital, he had had the cough. To be honest, its Rob, he ALWAYS has a cough. The nurse looked at him and asked if he was sick. We explained the situation of the immunizations and she basically said we should postpone the surgery. I was in shock after the urgency that had been drilled into us by every doctor and nurse we had seen over the last two weeks to be treated in this way didn't fit. Both Rob and I said no, but she wouldn't back down. She checked his temperature (which was normal) and then stepped out to talk with the anesthesiologist. I looked at Rob and I was fuming, this wasn't happening. He smiled in an attempt to calm me down. We heard the Nurse talking to the anesthesiologist, and when she returned she told us that we were going to cancel the surgery since its an elective one, and reschedule after Rob's cough had subsided. It took everything in my power not to jump out of my chair and punch her in the face. I was so mad, how dare you tell me its elective surgery. I responded "no we are having this surgery" and Rob could tell I was losing it It was his turn to take over the conversation. She then asked should I page your Doctor and explain the situation? I was vehemently nodding my head, "Yes please" with the most forced grin I've ever had. She proceeded to call the surgeon and then in the uncomfortable silence that followed waiting for him to call back she tried to explain that with a cough they couldn't do the delicate work on veins/arteries. There was to much potential that he would move and then botch the surgery. I just sat there in my head still seething about the elective surgery comment. The one shining momment in this was that Dr. Sweet called back right away and I got to hear him set the Nurse straight. First he asked if Rob was running a fever.
"No"
"How often is he coughing?"
"Not that often,"
"Then we are doing the surgery"
"But with the cough"
"WE ARE DOING THE SURGERY"
"oh, okay"
She hung up the phone and then as if we couldn't hear said, well your surgeon wants to continue with the surgery, but if you start running a fever let us know right away. With that the appointment was done. We never met the anesthelogist she left the room, I couldn't stop grinning and we headed out. It wasn't until the surgery day that I thought it odd we hadn't met the anesthesilogist. I actually went back to work to wrap some things up since it was so close to Christmas and I had an event not 4 day's away. I was still fuming even though the nurse had been put in her place. I had never felt such a primal anger before. I was glad she was someone we never had to deal with again, or at least not to this point.
So we were set, Surgery was in two days, we were going to spend the night with the Grandparents and leave REALLY early in the morning. Just take a quick breath, the hard part is still ahead.
In a quick foot note, the surgeon actually called us that night to check in see if Rob was still okay, and let us know that in a normal world the fistula procedure is consiedered more elective, most people are getting it much earlier when they still have 20-25 percent of kidney function so that it has enough time to mature. We didn't have the luxury of knowing how long that 8 percent would hold out.
Next up: THE FIRST SURGERY
Tuesday, August 21, 2012
Meeting Dr. Muczynski
Even though its taken several posts to get through this first part of the story it all really went by fast. We found ourselves back at the hospital waiting for our first visit with Rob's new/old doctor. He had seen Dr. Muczynski 15 years ago, but I had never met her. From the beginning Rob told me how much I would like her. He said she LOVED tests and would put him through the ringer to really understand what was going on. We had been in and out of the UW hospital so many times over the last week so it was hard to go back yet again, but in we trudged through the construction and to the check in counter. Deep breaths, pull out ID, insurance card, pay the co-pay, sit and fill out paperwork. It was slightly comical as we had just gone through this same process at the other clinic, and if I wanted to I could imagine this was a normal check up. We sat chatted and waited. When we were finally called back, it was still like any other check up. Weight, blood pressure check, lots and lots of questions (many we had answered several times already.) So more waiting and finally in walked Dr. Muczynski. She is tall with short grey hair and a winning smile. She walked in with this small folded 3X5 card with handwritten notes on it. She smiles and says well hello there, and proceeds to introduce herself to me. Then very frankly looks at her notes and says, "the last time you were here your numbers were steady at a 3 so what happened?"
Then she sat and listened. She smiled and nodded when Rob explained about insurance. She never was accusatory or upset she just listened. When Rob was done she then looked at her worn paper again and said, "well lets talk about our next steps." The past was the past, the good news was he was seeing someone again and he hadn't waited to long, we still had a bit of time to start moving in the right direction. Then for the first time I actually started to learn about what Rob had been going through for years.
Rob's sister had sent him this stuffed kidney, and from the moment it arrived until we started to really feel like our heads were back on straight it went with us.
Dr. Muczynski smiled she thought it was really cute, and then in all seriousness said, "well yours are bigger."
My first reaction was "wa, huh, how, uh, whose it, whats it . . . " How does someone have kidneys that big in his body, I didn't believe it, which I think she knew because the next thing she did was have us sit and look at the CAT scan from his hospital stay. We start at the back, look the kidney, then we move to the side, look more kidney oh, and there is the rupture that was bothering you. You could see his kidney's from all sides. The estimate is 25 centimeters per kidney. As we continued the appointment the questions became those of how was his appetite, did he get full quickly? He is one of the few men who can actually empathize with a pregnant woman. His kidneys had done what the baby usually does which is take over the majority of his body. His other organs were being pushed out of the way. I smiled and said that and Dr. smiled back saying I had hit the nail on the head. Three years ago when I was pregnant, as mentioned prior, we went on the diabetic diet. The nice thing about it is that we both dropped quiet a bit of weight. The one thing that never went away no matter how hard he tried was his gut. I knew he was self conscious about it and now we knew why it never went away. It wasn't a beer gut but a kidney gut. We got over the main shock of that and then started talking about what was next. We were fast tracked for surgery before the end of the year (a Christmas fistula) and hopefully his kidney function would give him enough time to let it mature so we would avoid a neck catheter for dialysis.
We looked at his kreatinin number, that 7 that had rushed us to the hospital. The number that in Robs world was the end. She then surprised us and gave us a new number. With how well Rob he still had enough function that in my mind it was total kidney failure, we could still imagine things were "normal." He didn't have water retention (they checked that by looking at his ankles) He was still producing enough urine, and though some of the filtration and other kidney functions weren't as strong, she felt he could actually go much higher. We were going to be CLOSELY watched but with his height (6 3) and the fact he was in good health "we could go up to a 12" To me that was a HUGE jump. I still didn't understand how quickly that number could rise, and I'll admit part of me was hoping it was still going to go down, but this made me realize that my mantra of "its serious but not dire" was actually true. We had a tiny bit of room to breathe.
She then started talking longer term. What we had to do to get him listed for a transplant, and the fact that he would need to have his kidneys removed. For me this was logical, scary but get rid of the things that gave him such pain. For Rob this was much harder, to not have any kidneys got him. This was the first time I watched Rob check out. He started thinking months from now to the next "someday" moments, and I was stuck in the present trying to figure out this one. When to get the surgery scheduled, how to take care of child care, what I needed to tell work. It was at this point I started to learn about my role in this as the advocate. No one can do this alone! You need two sets of ears and two brains working out whats next, and what questions to ask. It becomes this sense of checks and balances you each hear the same thing, but interpret it different. I found often that sometimes what I heard, though accurate wasn't what Rob heard, and it would take several weeks before he came around to what was actually said.
Things were moving, the nurse came in and gave us a crash course in what Medicare/Medicaid was ahead for us, and then smiled at Rob's "impressive organs" Not exactly what you want to hear, but this nurse had a way of making it seem not so overwhelming. She walked us to the reservation desk where we set up multiple appointments and then we were done.
It felt like we had been run over by a truck. Everything was moving so fast, and it wasn't even Christmas yet. I looked at Rob and said, "Hey lets get lunch." We ended up at U Village and ate at The Ram. We sat and just stared at his iPhone and calender and start to work out what this really meant. We hashed and re hashed the appointment. Then we hashed are re hashed what to do about Christmas, I was grateful that for some reason we had gotten an earlier start on things. The tree was up and many things taken care of. Yet there was so much still to do and we were still struggling to catch up. Then it was how do we keep this normal for the boys and what is that new normal? We took advantage of the time and bought some holiday presents, but it was hard to be in the right mood with everything that was hanging over us. I finally got back to work, but I still had a hard time concentrating. I look back and wonder how I ever made it through. I know I was just putting one foot in front of the other, I was struggling to learn about this disease and what it meant for our family. If I'm perfectly honest I'm still just putting one foot in front of another, trying to hold on to some sense of normalcy. Of course in the middle of all this is the slew of phone calls to family about where things are, and what Dr. Muczynski had said and yes he is still able to function at a 7! My mind though kept going back to that warn 3 X 5 card that she had kept for 15 years. Even though it was overwhelming, and I didn't understand everything yet I felt a sense of relief. For a Dr. to keep notes that long, and walk into an appointment like those 15 years hadn't even happened, picking up where she had left off we were in good hands! As much as I had to be Rob's advocate, she wasn't the person I was going to have to fight for information from, or question, she was going to be on our side which for many PKD patients is a rarity.
NEXT UP: Fistula surgery
Then she sat and listened. She smiled and nodded when Rob explained about insurance. She never was accusatory or upset she just listened. When Rob was done she then looked at her worn paper again and said, "well lets talk about our next steps." The past was the past, the good news was he was seeing someone again and he hadn't waited to long, we still had a bit of time to start moving in the right direction. Then for the first time I actually started to learn about what Rob had been going through for years.
Rob's sister had sent him this stuffed kidney, and from the moment it arrived until we started to really feel like our heads were back on straight it went with us.
Dr. Muczynski smiled she thought it was really cute, and then in all seriousness said, "well yours are bigger."
My first reaction was "wa, huh, how, uh, whose it, whats it . . . " How does someone have kidneys that big in his body, I didn't believe it, which I think she knew because the next thing she did was have us sit and look at the CAT scan from his hospital stay. We start at the back, look the kidney, then we move to the side, look more kidney oh, and there is the rupture that was bothering you. You could see his kidney's from all sides. The estimate is 25 centimeters per kidney. As we continued the appointment the questions became those of how was his appetite, did he get full quickly? He is one of the few men who can actually empathize with a pregnant woman. His kidneys had done what the baby usually does which is take over the majority of his body. His other organs were being pushed out of the way. I smiled and said that and Dr. smiled back saying I had hit the nail on the head. Three years ago when I was pregnant, as mentioned prior, we went on the diabetic diet. The nice thing about it is that we both dropped quiet a bit of weight. The one thing that never went away no matter how hard he tried was his gut. I knew he was self conscious about it and now we knew why it never went away. It wasn't a beer gut but a kidney gut. We got over the main shock of that and then started talking about what was next. We were fast tracked for surgery before the end of the year (a Christmas fistula) and hopefully his kidney function would give him enough time to let it mature so we would avoid a neck catheter for dialysis.
We looked at his kreatinin number, that 7 that had rushed us to the hospital. The number that in Robs world was the end. She then surprised us and gave us a new number. With how well Rob he still had enough function that in my mind it was total kidney failure, we could still imagine things were "normal." He didn't have water retention (they checked that by looking at his ankles) He was still producing enough urine, and though some of the filtration and other kidney functions weren't as strong, she felt he could actually go much higher. We were going to be CLOSELY watched but with his height (6 3) and the fact he was in good health "we could go up to a 12" To me that was a HUGE jump. I still didn't understand how quickly that number could rise, and I'll admit part of me was hoping it was still going to go down, but this made me realize that my mantra of "its serious but not dire" was actually true. We had a tiny bit of room to breathe.
She then started talking longer term. What we had to do to get him listed for a transplant, and the fact that he would need to have his kidneys removed. For me this was logical, scary but get rid of the things that gave him such pain. For Rob this was much harder, to not have any kidneys got him. This was the first time I watched Rob check out. He started thinking months from now to the next "someday" moments, and I was stuck in the present trying to figure out this one. When to get the surgery scheduled, how to take care of child care, what I needed to tell work. It was at this point I started to learn about my role in this as the advocate. No one can do this alone! You need two sets of ears and two brains working out whats next, and what questions to ask. It becomes this sense of checks and balances you each hear the same thing, but interpret it different. I found often that sometimes what I heard, though accurate wasn't what Rob heard, and it would take several weeks before he came around to what was actually said.
Things were moving, the nurse came in and gave us a crash course in what Medicare/Medicaid was ahead for us, and then smiled at Rob's "impressive organs" Not exactly what you want to hear, but this nurse had a way of making it seem not so overwhelming. She walked us to the reservation desk where we set up multiple appointments and then we were done.
It felt like we had been run over by a truck. Everything was moving so fast, and it wasn't even Christmas yet. I looked at Rob and said, "Hey lets get lunch." We ended up at U Village and ate at The Ram. We sat and just stared at his iPhone and calender and start to work out what this really meant. We hashed and re hashed the appointment. Then we hashed are re hashed what to do about Christmas, I was grateful that for some reason we had gotten an earlier start on things. The tree was up and many things taken care of. Yet there was so much still to do and we were still struggling to catch up. Then it was how do we keep this normal for the boys and what is that new normal? We took advantage of the time and bought some holiday presents, but it was hard to be in the right mood with everything that was hanging over us. I finally got back to work, but I still had a hard time concentrating. I look back and wonder how I ever made it through. I know I was just putting one foot in front of the other, I was struggling to learn about this disease and what it meant for our family. If I'm perfectly honest I'm still just putting one foot in front of another, trying to hold on to some sense of normalcy. Of course in the middle of all this is the slew of phone calls to family about where things are, and what Dr. Muczynski had said and yes he is still able to function at a 7! My mind though kept going back to that warn 3 X 5 card that she had kept for 15 years. Even though it was overwhelming, and I didn't understand everything yet I felt a sense of relief. For a Dr. to keep notes that long, and walk into an appointment like those 15 years hadn't even happened, picking up where she had left off we were in good hands! As much as I had to be Rob's advocate, she wasn't the person I was going to have to fight for information from, or question, she was going to be on our side which for many PKD patients is a rarity.
NEXT UP: Fistula surgery
Tuesday, August 14, 2012
Starting to Share the Story
Sometimes telling the story is the hardest part. It had been such a crazy week our heads were still spinning, but even while we were in the hospital there was this mis-conception that we were caught unaware. I over heard a nurse telling someone how we hadn't known about his disease, and that we were having to deal with that on top of the kidney failure. I was tired of explaining that this wasn't a new thing, we knew it was coming we just thought we had more time. Someday had seemed much farther in the future. As we continued telling family and close friends over the weekend it slowly became easier whether that was because we were just used to telling the story, or we were finally starting to let things sink in is any body's guess. For now it was people who knew us and knew the history enough to just listen where we were, and offer their suggestions for diet etc. My mother is a nurse so she helped explain medical terms that I was still sketchy on (like nephrologist or renal doctor, kidney specialist) and calmed me down a lot. She just listened to what happened and I had no qualms about asking my questions, and I didn't need to be the expert as to what was going on. On the other hand I also spent a lot of time talking with Rob's sister. She too has this disease and I spent much of my time trying to convince her Rob wasn't dieing. She questioned everything and I felt myself defending every move and decision we made, in this case I had to be the expert. It got to the point many times that Rob would see she was calling and just hand the phone to me and let me do the talking. If you saw Rob you'd know things while being serious were not dire, but without that option I had to spend a lot of time both getting lectured about why we hadn't been to the doctor and how we shouldn't be leaving the hospital. For her especially like our first doctors it was all about the numbers, when you are at x number then this happens. While that is true there is some wiggle room and this we learned about as we started to work with his doctor.
For many people it was all about the quickest solution, he needs a kidney now, and that would be the end all be all. That isn't really how it works and since we had waited so long it wasn't an option either. We had other steps that needed to be taken. There is a saying in show business that much of what we do is hurry up then wait. This is where we were in life we hurried through the testing but now we had to wait for the next someday moment. For us that was getting ready for dialysis but even that was a ways off.
For many people it was all about the quickest solution, he needs a kidney now, and that would be the end all be all. That isn't really how it works and since we had waited so long it wasn't an option either. We had other steps that needed to be taken. There is a saying in show business that much of what we do is hurry up then wait. This is where we were in life we hurried through the testing but now we had to wait for the next someday moment. For us that was getting ready for dialysis but even that was a ways off.
It was nice that neither of us had to work right after everything we were able to limit who we saw. Over the weekend we stayed mellow and outside of my folks and one or two friends we really didn't see anyone. We just started to process everything we had been through. I spent an hour drafting and redrafting an e-mail to Owen's teachers so should he have outbursts or the bigger concern that he was just to tired, they would at least understand a little of what was going on. It was the first time I put this thing we were going through in writting, and it made it real. I found as I proof read I couldn't stop crying. I knew Owen understood some of what was going on especially after the incident at the emergency room. He had listened to every conversation we had with people and started quoting certain parts back to me, sometimes he is too smart for his own good. As much as I wanted to hide everything, to protect him, I knew I couldn't. I was grateful for the support I received from his teachers. They not only kept an eye on him but applauded our openness with him. This came to be a theme through our conversations with people. Those who had also gone through similar medical emergencies especially who had siblings or parents who went through something. The concensis was that it was important we continue talking about it with Owen. It was one of the first right things that happened in a whole lot of wrong.
Then the weekend was over and I had to go back to work. Not many actually knew what had happened yet, I really had only conversed in text to my boss. It was a couple of day's before I saw anyone outside of my immediate team, who already knew enough of what was going on and all of us having had medical "baggage" were very supportive. It wasn't till a few days later that the cat started to escape from the bag. I ran into my manager in the elevator. She smiled at me and asked how Rob was. Not realizing how much she did/didn't know I started with my standard "its serious but not dire" statement. From there came the "we knew he had polysystic kidneys but he will need a new kidney as his are only working at 8%" I'll never forget the look on her face. It start out as polite concern and then as the seriousness of what happened sunk in (and I realized she hadn't known) the eyes widened and it became a longer conversation. Most people who I have talked to about this have known someone on dialysis or who have gotten a transplant and so it becomes almost like trading war stories. After this accidental slip on my part it was then announce at the executive level. It became urgent for me to send something out and talk to human resources before the cat had completly escaped. I started the mountain of paperwork for FMLA even though I didn't understand yet what I would need. I drafted yet another e-mail with a brief explanation that asked for people to respect my privacy (this one only took me 30 mintues to write and rewrite.) It was again becoming "real" really fast. Then, even though we requested people not to, the questions started to pour in. Rob is an interesting figure in my work life because he used to work at the aquarium with me. He knows so many of the people there and is more than just "Becky's husband." As more and more people talked to me there were roughly three types of conversations. There were ones who this had brought the issue of mortality into sharp focus. There were those who wanted to swap the war stories, and give the "everything is going to be fine I had a . . . who had . . . and has had their new kidney for . . ." Finally many asked what they could do, and as much as I appreciated the sentiment my brain couldn't come up with what I needed. Some just looked at me and told me what they could do (bring a meal when it was time, take care of the kids, take me to lunch and let me just talk, or just make me laugh at life) but even these were hard to process in the momment. I never want to seem rude or brush anyone aside who wants to help but in the same vein we weren't there yet. This wasn't a sprint but a marathon and if you looked at Rob you wouldn't have believed him sick (a curse of PKD.) One of the things I have been most grateful for are the people who have called out of the blue, or sent a message that just told me they were coming over. I needed the social, the chance to not think about stuff for a while, but no longer had the energy to plan. (Okay I'll admit I didn't do such a great job planning prior either.) These friends were never pushy and if it wasn't the right time they backed down, but rather than waiting for me to invite they took it upon themselves to populate my calander. It kept both of us from dwelling and many times it helped entertain and create a sense of normalcy for our kids.
When I was in middle school I lost my grandmother to cancer. When I first found out I was sad, but a bit relieved because she had been suffering so much for so long. My mother had let my teachers know and several let me get out of tests or homework. The teacher I remember the most though was home ecinomics. It had been several weeks after and it was for some reason just a rough day. She had never let on that she knew, but that day she walked up to me, gave me a hug and said "if you need to take a break today" I learned that she had been watching me, and waited for when I really would need the support. Looking back on what happened at that time, and comparing it to now, there are many people who like that teacher have waited until the moment I needed the support and have just been there. This is a recurring them for this journey and something I hope to emulate one day when my turn comes to be the supporter rather than the supported.
Next Up: MEETING DR. MUCZYNSKI
Then the weekend was over and I had to go back to work. Not many actually knew what had happened yet, I really had only conversed in text to my boss. It was a couple of day's before I saw anyone outside of my immediate team, who already knew enough of what was going on and all of us having had medical "baggage" were very supportive. It wasn't till a few days later that the cat started to escape from the bag. I ran into my manager in the elevator. She smiled at me and asked how Rob was. Not realizing how much she did/didn't know I started with my standard "its serious but not dire" statement. From there came the "we knew he had polysystic kidneys but he will need a new kidney as his are only working at 8%" I'll never forget the look on her face. It start out as polite concern and then as the seriousness of what happened sunk in (and I realized she hadn't known) the eyes widened and it became a longer conversation. Most people who I have talked to about this have known someone on dialysis or who have gotten a transplant and so it becomes almost like trading war stories. After this accidental slip on my part it was then announce at the executive level. It became urgent for me to send something out and talk to human resources before the cat had completly escaped. I started the mountain of paperwork for FMLA even though I didn't understand yet what I would need. I drafted yet another e-mail with a brief explanation that asked for people to respect my privacy (this one only took me 30 mintues to write and rewrite.) It was again becoming "real" really fast. Then, even though we requested people not to, the questions started to pour in. Rob is an interesting figure in my work life because he used to work at the aquarium with me. He knows so many of the people there and is more than just "Becky's husband." As more and more people talked to me there were roughly three types of conversations. There were ones who this had brought the issue of mortality into sharp focus. There were those who wanted to swap the war stories, and give the "everything is going to be fine I had a . . . who had . . . and has had their new kidney for . . ." Finally many asked what they could do, and as much as I appreciated the sentiment my brain couldn't come up with what I needed. Some just looked at me and told me what they could do (bring a meal when it was time, take care of the kids, take me to lunch and let me just talk, or just make me laugh at life) but even these were hard to process in the momment. I never want to seem rude or brush anyone aside who wants to help but in the same vein we weren't there yet. This wasn't a sprint but a marathon and if you looked at Rob you wouldn't have believed him sick (a curse of PKD.) One of the things I have been most grateful for are the people who have called out of the blue, or sent a message that just told me they were coming over. I needed the social, the chance to not think about stuff for a while, but no longer had the energy to plan. (Okay I'll admit I didn't do such a great job planning prior either.) These friends were never pushy and if it wasn't the right time they backed down, but rather than waiting for me to invite they took it upon themselves to populate my calander. It kept both of us from dwelling and many times it helped entertain and create a sense of normalcy for our kids.
When I was in middle school I lost my grandmother to cancer. When I first found out I was sad, but a bit relieved because she had been suffering so much for so long. My mother had let my teachers know and several let me get out of tests or homework. The teacher I remember the most though was home ecinomics. It had been several weeks after and it was for some reason just a rough day. She had never let on that she knew, but that day she walked up to me, gave me a hug and said "if you need to take a break today" I learned that she had been watching me, and waited for when I really would need the support. Looking back on what happened at that time, and comparing it to now, there are many people who like that teacher have waited until the moment I needed the support and have just been there. This is a recurring them for this journey and something I hope to emulate one day when my turn comes to be the supporter rather than the supported.
Next Up: MEETING DR. MUCZYNSKI
Saturday, August 4, 2012
Learning the New "Normal"
When I was pregnant with our second child I had gestational diabetes. We had to make drastic changes to our diet, but nobody gave me a number of where I my blood sugars were supposed to be. The first appointment I had after the diagnosis the doctor looked at my numbers and said "yep you need to be on medication" I'm one who wants to be as natural as possible and since I was already on blood pressure medication I didn't want to add another pill so I asked, "where are my sugars supposed to be?" When she told me a I looked at my sheet, I wasn't that far off. I asked for one more week with diet to see how it went. I really liked my doctor and she gave me that one more week. When we returned to the office it was still determined that I needed the medication. Since I understood where my numbers were supposed to be, and because I could see where the spikes were I understood it wasn't something I could control with diet and I needed the medication. The interesting part of this story is that I had so embraced the diabetic diet that she lowered the dose amount of medication because my numbers were so good she felt I only needed a little help.
This may seem like a random tangent, but here is where it comes in. I dive wholeheartedly into change if I need it for my health or my families health. We were given the paperwork about potassium, but I never asked for how much he was allowed to have in a day and the doctors made it sound like we had to cut all potassium out of his diet or he would have a heart attack. (Nice parting thoughts I know!)
So we head home from the hospital and Rob was feeling a bit crabby like a toddler who just gotten his shots but we both went to work the next day, life goes on. The doctors had done a complete 180 from "he's going to die now" to "oh, while its serious, he still can live life normally as long as he sees a nephrologist (renal specialist) regularly." So it was life as normal the hospital stay very close in my mind but not urgent. I was more worried about what our dinners were going to look like, how to explain to the kids what was going on, and what our future held. For those who don't know Rob is a stage hand/ event production person so its physical work. I was a bit worried about how he would react to working, but I also knew who was working with him and that they would make sure he didn't do anything to strenuous. Things seemed to go well, outside of just having to tell a few people what was going on it was a thing of the past. We had a weekend to think about what the future held, and how we were going to deal with it. I got home from work and was getting ready to make dinner when I got the call.
"Hi honey can you come get me?"
"Are we going home or to the ER?"
"We'll decide when you get here."
My heart stopped. I started to scramble, turned off ovens, grabbing everything for the boy's trying to get Owen to stop playing Wii trying to get Ian into shoes. All the while I'm trying not to freak out or freak them out. He said chest pain. . . where was his potassium . . . was his sister right when she told us we shouldn't leave the hospital. I finally got the boy's into the car and started the 20 minute drive that seemed like an hour. In reality it should have only be less then 10 minutes but at rush hour near the Seattle Center from Capitol Hill. . . yeah. The whole while I'm trying not to cry since I was driving and I didn't want to freak the kids out more than I had to. We had just been gone from them for three days and I hadn't had the chance to explain why.
We finally pull up to EMP where Rob was working and two of his friends were helping him to the car. He was shuffling, and the fear I saw in one of his friends eyes mirrored my own. I had known from the moment he called we were headed back but it wasn't till I saw him that it sunk in that this might be the rest of our lives. I handed him my phone as we pulled out and told him to call my parents, who thank goodness were able to meet us at the ER. They took Rob back for testing, and I sat with the boys till my folks came. Once they showed up I headed back to see what was happening. They strapped him to an EKG machine, and started talking out what our past three days had been. The heart was normal, we were still waiting on labs but it was looking to be no real surprises. I went back to the waiting room and Owen was standing exactly where I had left him. My mom said he wouldn't move and stared at the door I had walked through until I had come back. I hadn't done a good job of hiding my fears obviously. I picked him up into my lap and hugged him tight "daddy is going to be fine, its a false alarm" I just kept repeating that until it started to sink in. I felt him start to relax. He had heard so much of what was happening, but this was the first time he really felt the stress. It was then I knew I couldn't hide what was going on from him. He deserved to know, and understand especially if someday he would be in a similar position (remember 50% chance Rob will pass it on.) I looked at him and tried to lighten the mood. We joked, he lost a tooth which is forever imprinted on both our memories, and my folks took them to eat. I was able to sit with Rob a little longer and we saw his blood work. As the doctor suspected numbers really hadn't changed, everything except the obvious was well within the normal range.
One of the best things that came out of this was the doctor reinforced that we did the right thing by coming in. After all of the bad experiences Rob had been through that caused us to not go to the doctor, we didn't have the luxury anymore to hope for things to turn around. Now anything that felt off meant a trip to a doctor, and as I learned over the next few months the emergency room.
In an interesting side note as I was writing this post I found myself crying remembering that night. My eldest watched me cry and as I explained why he remembered that evening as well. "I just wanted you to come back" was his reply. The realization that this journey isn't mine, isn't Rob's its our families and friends has been brought into such sharp focus. Any chronic diseases reach is so much bigger than anyone can ever imagine.
For the rest of the weekend we took it easy, we cut our potassium to almost nothing and we visited with friends to try and get things back to normal as much as possible. As we started to share our story, Owen was always there listening. If he had questions I would try and answer as best I could in a way a 6 year old would understand. Things were okay, except I was tired, and it was more than just stress. I was hungry (all the time) and we started reviewing how this new diet was working. I finally sat down and looked at the numbers that were sent home with us, what he was allowed. What the difference that little bit of research made, the amount of potassium he was actually allowed was so much more than we had ever thought, it reminded me of the diabetic diet everything in moderation. I once again got frustrated with that doctor with the swagger, he made it seem like we had no choices, and in a way that there was minimal hope unless we made drastic changes. Rob and I looked at each other, we knew we would see his doctor soon and get yet ANOTHER set of labs, and so far everything looked good. We as a couple decided to go back to our normal diet and wait till a doctor who actually understood the disease told us what we should cut back on. That was the best decision we made. Looking back our diet hasn't changed outside of my taking a more active roll in home preservation so I can control salts and give high potassium foods (beans specifically) a extra soak. His potassium and phosphorus are exactly where they should be. It taught me to be more active in questioning things. Its okay to question doctors and make them explain, and it was going to be my job to be that person.
Next up: STARTING TO SHARE OUR STORY
This may seem like a random tangent, but here is where it comes in. I dive wholeheartedly into change if I need it for my health or my families health. We were given the paperwork about potassium, but I never asked for how much he was allowed to have in a day and the doctors made it sound like we had to cut all potassium out of his diet or he would have a heart attack. (Nice parting thoughts I know!)
So we head home from the hospital and Rob was feeling a bit crabby like a toddler who just gotten his shots but we both went to work the next day, life goes on. The doctors had done a complete 180 from "he's going to die now" to "oh, while its serious, he still can live life normally as long as he sees a nephrologist (renal specialist) regularly." So it was life as normal the hospital stay very close in my mind but not urgent. I was more worried about what our dinners were going to look like, how to explain to the kids what was going on, and what our future held. For those who don't know Rob is a stage hand/ event production person so its physical work. I was a bit worried about how he would react to working, but I also knew who was working with him and that they would make sure he didn't do anything to strenuous. Things seemed to go well, outside of just having to tell a few people what was going on it was a thing of the past. We had a weekend to think about what the future held, and how we were going to deal with it. I got home from work and was getting ready to make dinner when I got the call.
"Hi honey can you come get me?"
"Are we going home or to the ER?"
"We'll decide when you get here."
My heart stopped. I started to scramble, turned off ovens, grabbing everything for the boy's trying to get Owen to stop playing Wii trying to get Ian into shoes. All the while I'm trying not to freak out or freak them out. He said chest pain. . . where was his potassium . . . was his sister right when she told us we shouldn't leave the hospital. I finally got the boy's into the car and started the 20 minute drive that seemed like an hour. In reality it should have only be less then 10 minutes but at rush hour near the Seattle Center from Capitol Hill. . . yeah. The whole while I'm trying not to cry since I was driving and I didn't want to freak the kids out more than I had to. We had just been gone from them for three days and I hadn't had the chance to explain why.
We finally pull up to EMP where Rob was working and two of his friends were helping him to the car. He was shuffling, and the fear I saw in one of his friends eyes mirrored my own. I had known from the moment he called we were headed back but it wasn't till I saw him that it sunk in that this might be the rest of our lives. I handed him my phone as we pulled out and told him to call my parents, who thank goodness were able to meet us at the ER. They took Rob back for testing, and I sat with the boys till my folks came. Once they showed up I headed back to see what was happening. They strapped him to an EKG machine, and started talking out what our past three days had been. The heart was normal, we were still waiting on labs but it was looking to be no real surprises. I went back to the waiting room and Owen was standing exactly where I had left him. My mom said he wouldn't move and stared at the door I had walked through until I had come back. I hadn't done a good job of hiding my fears obviously. I picked him up into my lap and hugged him tight "daddy is going to be fine, its a false alarm" I just kept repeating that until it started to sink in. I felt him start to relax. He had heard so much of what was happening, but this was the first time he really felt the stress. It was then I knew I couldn't hide what was going on from him. He deserved to know, and understand especially if someday he would be in a similar position (remember 50% chance Rob will pass it on.) I looked at him and tried to lighten the mood. We joked, he lost a tooth which is forever imprinted on both our memories, and my folks took them to eat. I was able to sit with Rob a little longer and we saw his blood work. As the doctor suspected numbers really hadn't changed, everything except the obvious was well within the normal range.
One of the best things that came out of this was the doctor reinforced that we did the right thing by coming in. After all of the bad experiences Rob had been through that caused us to not go to the doctor, we didn't have the luxury anymore to hope for things to turn around. Now anything that felt off meant a trip to a doctor, and as I learned over the next few months the emergency room.
In an interesting side note as I was writing this post I found myself crying remembering that night. My eldest watched me cry and as I explained why he remembered that evening as well. "I just wanted you to come back" was his reply. The realization that this journey isn't mine, isn't Rob's its our families and friends has been brought into such sharp focus. Any chronic diseases reach is so much bigger than anyone can ever imagine.
For the rest of the weekend we took it easy, we cut our potassium to almost nothing and we visited with friends to try and get things back to normal as much as possible. As we started to share our story, Owen was always there listening. If he had questions I would try and answer as best I could in a way a 6 year old would understand. Things were okay, except I was tired, and it was more than just stress. I was hungry (all the time) and we started reviewing how this new diet was working. I finally sat down and looked at the numbers that were sent home with us, what he was allowed. What the difference that little bit of research made, the amount of potassium he was actually allowed was so much more than we had ever thought, it reminded me of the diabetic diet everything in moderation. I once again got frustrated with that doctor with the swagger, he made it seem like we had no choices, and in a way that there was minimal hope unless we made drastic changes. Rob and I looked at each other, we knew we would see his doctor soon and get yet ANOTHER set of labs, and so far everything looked good. We as a couple decided to go back to our normal diet and wait till a doctor who actually understood the disease told us what we should cut back on. That was the best decision we made. Looking back our diet hasn't changed outside of my taking a more active roll in home preservation so I can control salts and give high potassium foods (beans specifically) a extra soak. His potassium and phosphorus are exactly where they should be. It taught me to be more active in questioning things. Its okay to question doctors and make them explain, and it was going to be my job to be that person.
Next up: STARTING TO SHARE OUR STORY
Tuesday, July 31, 2012
The dreaded hospital
I've never truly been through the standard admitting process. The three times I've stayed in a hospital were the births of my two sons (I was in labor or going to be induced we worried about the admitting later) and my youngest who tried to be a rock-star and choked on his on vomit, emergency room complete with ambulance ride. So actually siting at the admitting desk was a bit strange. The hullabaloo of getting the kids taken care of and what to pack and calling out of work had occupied so much of my brain that it wasn't until we were sitting there that the seriousness of what was happening had started to sink in. Rob had spent the last few hours repeating the number 7 I knew it was a bad number and had him stressed out. Yet in my mind we were there for observation a quick overnight and he would be back on his feet. It never crossed my mind that we were at a someday moment.
So, that number 7 was his creatinine count. Now the only real reference I had was from when I was pregnant. My creatinine had creeped up to 2 and it got the doctors worried about pre eclampsia so I knew 7 was a bad number. But what was creatinine? To be honest its still a little hazy for me but basically its a waste product that the kidneys filter out. If that number starts to creep you are heading for kidney failure. I got a sudden shock of seriousness. We had doctor after doctor come in and we explained the pain, why we were there, why it had taken us so long to come in, and yes we know he has polycystic kidneys. It was hard to keep repeating the story because each time it became more and more real. When we were finally set the nurse told Rob to eat up because after midnight, no more food. Now silly me honestly believed that it was for some kidney test my head wouldn't allow me to realize that they were getting him ready for emergency surgery in which a catheter for dialysis would be put in. The other complication added into this was his heart was showing signs of too much potassium, another issue kidney failure patients can have. We all know about how good potassium is for you, but should you have to much you can have a heart attack or stroke. AWESOME! something new to stress about. We "slept" if you can call it that. We were put in the transplant ward as it was the only place that had an opening (I know the irony) and since Rob had a slight cough he was in "quarantine" this meant anyone who came to see us had to robe up with mask glove In my case I got to sleep in a lovely yellow front robe, mask with plastic guard over my eyes and pink gloves. I was a sight! Since they were measuring fluid in and out I had to use a outside bathroom which involved talking all of my lovely garb off and then starting a new when I returned. I also found myself keeping a much closer eye on how Rob was sitting, moving, talking, moaning. anything that could help me understand where his pain was. He had spent the night before being mocked by our 3 year old who pretended to hiccup and then say "ow" just like daddy was. Every time the nurse came in and asked about how his pain was they always looked at me and I would respond "he's better he isn't doing as many of his tells." I became the pain meter because Rob is very "stoic" (one of my favorite nurses terms) when it came to pain. Looking back over the last 12 years I realized he has always just dealt with his pain, and hidden how much there really is.
So after a fitful night, we finally had the doctors come in for am rounds. At a teaching hospital like UW there are at least 4 doctors at any time. We had two attendees a nephrologist and the main doctor who in our case had a cold and wasn't allowed on our floor. We started with one of the attendees who came in to let us know what was going to happen. She caught Rob at a weak moment, and as he answered some of the usual questions he actually started to cry. Those tears got me I had never seen him cry over this problem of his. We still didn't know much but we knew it was serious. When the whole group came in, the nephrologist snuck in first and started explaining a bit of what was going on. Yes his creatinine was at 7 (almost 8) but had stayed steady over the night. He also wasn't showing other signs of failure, his appetite was there, he was still peeing, he wasn't showing water retention especially in his ankles. She looked at us and said "We think you've been at this number for a while" the urgency started to lift. We weren't headed into surgery yet. The scary part was the next number we heard 8%. His kidneys were functioning at 8%. I didn't know how to process that. The nephrologists smiled at us and explained that had we been in normal care we would have been working prior to this point getting his fistula put in and mentally preparing him for transplant and potentially dialysis. There was nothing accusatory in her manner, it was very matter of fact but caring. I liked her instantly. That couldn't be said of the next doctor we met. The lead of the two attendees came in with a swagger that drove me nuts. He spent so much time dictating what we were supposed to do, and where we were at with out really listening to our story. Since we hadn't been to a doctor in so long we obviously didn't know anything. He even went as far to try and tell Rob what a cyst rupturing would feel like. I watched Rob start to close down and not listen I started to get worried. I was grateful to the nephrologist who stepped in and stopped the doctor with one sentence "He has lived with this disease for the last twenty years and he of anyone in this room can explain what a cyst rupture feels like" This shut the doctor up. Of course he just started on another tangent. We were going to be there a second night even though he was steady, they wanted more observation.
The rest of that day and the next were a blur. I remember parts vividly and others mesh together. I spent a lot of time on the phone explaining to everyone what was going on. I think one of the hardest things as a caregiver is being the mouth piece. You are the one everyone turns to trying get information. It was hard for me to process things because I had to keep telling the story over and over, and never got the chance to just sit and deal. Thank god for my parents and nanny who just took care of the boys for those two days. I am also grateful to work for never asking and just letting me be gone, even though there was important things I was supposed to be helping with. I'm grateful for Facetime which helped us actually see our kids for however brief a time. It was hard being away from them, but I also dreaded how I was going to explain it to them especially my very precocious 6 year old. In a strange way time stopped for those two days, it was a bubble we lived in and the world just kept going without us. As things were wrapping up we learned more and more about what our next "someday" moment was going to be. He had his arm mapped for placement of his fistula (I promise I'll explain what this is soon) We continued regular tests of his urine but numbers continued to be steady. The bad ones even dropped a little but as Rob continually reminded me, they would never go to a good place. We met with a dietitian, who didn't know how to handle vegetarians especially with the renal failure diet which needs high proteins but low phosphates and potassium (a challenge to be sure.)
The doctors finally decided that as long as we set up an appointment with both our general practitioner, and a nephrologist there was no reason to keep him there. We LOVED the nephrologists who had seen Rob in the hospital yet she told us to stay at UW. Every someday moment we were headed for could be dealt with better at UW, and she was based out of Harbor View. This is when we learned the Dr. Kim Muczynski was still there and somehow we got an appointment with her.
For our final check out since our head doctor still had a cold and wasn't allowed on our floor we ended up in a conference room. At this time we went over everything they felt we should know. This included cutting as much potassium out of our diet as possible, and building his iron. Now potassium is in EVERYTHING. Some of the things to avoid oranges, tomatoes, potatoes, the list goes on and on. Having had iron deficiency during my pregnancy I instantly had a red flag raise when they wanted him to take iron which is notoriously hard for the body to absorb in pill form, so to help you take something with Vitamin C say . . . Orange Juice. I raised the question and stumped the attendees. This wasn't the first time for this group that what they were telling us to do didn't add up, but it wasn't till we were home that I realized how much. Since they knew we were going to be getting Rob listed, they gave him a bunch of immunizations and boosters and prescriptions for pain then sent us home.
Up Next: Getting used to the "new normal"
So, that number 7 was his creatinine count. Now the only real reference I had was from when I was pregnant. My creatinine had creeped up to 2 and it got the doctors worried about pre eclampsia so I knew 7 was a bad number. But what was creatinine? To be honest its still a little hazy for me but basically its a waste product that the kidneys filter out. If that number starts to creep you are heading for kidney failure. I got a sudden shock of seriousness. We had doctor after doctor come in and we explained the pain, why we were there, why it had taken us so long to come in, and yes we know he has polycystic kidneys. It was hard to keep repeating the story because each time it became more and more real. When we were finally set the nurse told Rob to eat up because after midnight, no more food. Now silly me honestly believed that it was for some kidney test my head wouldn't allow me to realize that they were getting him ready for emergency surgery in which a catheter for dialysis would be put in. The other complication added into this was his heart was showing signs of too much potassium, another issue kidney failure patients can have. We all know about how good potassium is for you, but should you have to much you can have a heart attack or stroke. AWESOME! something new to stress about. We "slept" if you can call it that. We were put in the transplant ward as it was the only place that had an opening (I know the irony) and since Rob had a slight cough he was in "quarantine" this meant anyone who came to see us had to robe up with mask glove In my case I got to sleep in a lovely yellow front robe, mask with plastic guard over my eyes and pink gloves. I was a sight! Since they were measuring fluid in and out I had to use a outside bathroom which involved talking all of my lovely garb off and then starting a new when I returned. I also found myself keeping a much closer eye on how Rob was sitting, moving, talking, moaning. anything that could help me understand where his pain was. He had spent the night before being mocked by our 3 year old who pretended to hiccup and then say "ow" just like daddy was. Every time the nurse came in and asked about how his pain was they always looked at me and I would respond "he's better he isn't doing as many of his tells." I became the pain meter because Rob is very "stoic" (one of my favorite nurses terms) when it came to pain. Looking back over the last 12 years I realized he has always just dealt with his pain, and hidden how much there really is.
So after a fitful night, we finally had the doctors come in for am rounds. At a teaching hospital like UW there are at least 4 doctors at any time. We had two attendees a nephrologist and the main doctor who in our case had a cold and wasn't allowed on our floor. We started with one of the attendees who came in to let us know what was going to happen. She caught Rob at a weak moment, and as he answered some of the usual questions he actually started to cry. Those tears got me I had never seen him cry over this problem of his. We still didn't know much but we knew it was serious. When the whole group came in, the nephrologist snuck in first and started explaining a bit of what was going on. Yes his creatinine was at 7 (almost 8) but had stayed steady over the night. He also wasn't showing other signs of failure, his appetite was there, he was still peeing, he wasn't showing water retention especially in his ankles. She looked at us and said "We think you've been at this number for a while" the urgency started to lift. We weren't headed into surgery yet. The scary part was the next number we heard 8%. His kidneys were functioning at 8%. I didn't know how to process that. The nephrologists smiled at us and explained that had we been in normal care we would have been working prior to this point getting his fistula put in and mentally preparing him for transplant and potentially dialysis. There was nothing accusatory in her manner, it was very matter of fact but caring. I liked her instantly. That couldn't be said of the next doctor we met. The lead of the two attendees came in with a swagger that drove me nuts. He spent so much time dictating what we were supposed to do, and where we were at with out really listening to our story. Since we hadn't been to a doctor in so long we obviously didn't know anything. He even went as far to try and tell Rob what a cyst rupturing would feel like. I watched Rob start to close down and not listen I started to get worried. I was grateful to the nephrologist who stepped in and stopped the doctor with one sentence "He has lived with this disease for the last twenty years and he of anyone in this room can explain what a cyst rupture feels like" This shut the doctor up. Of course he just started on another tangent. We were going to be there a second night even though he was steady, they wanted more observation.
The rest of that day and the next were a blur. I remember parts vividly and others mesh together. I spent a lot of time on the phone explaining to everyone what was going on. I think one of the hardest things as a caregiver is being the mouth piece. You are the one everyone turns to trying get information. It was hard for me to process things because I had to keep telling the story over and over, and never got the chance to just sit and deal. Thank god for my parents and nanny who just took care of the boys for those two days. I am also grateful to work for never asking and just letting me be gone, even though there was important things I was supposed to be helping with. I'm grateful for Facetime which helped us actually see our kids for however brief a time. It was hard being away from them, but I also dreaded how I was going to explain it to them especially my very precocious 6 year old. In a strange way time stopped for those two days, it was a bubble we lived in and the world just kept going without us. As things were wrapping up we learned more and more about what our next "someday" moment was going to be. He had his arm mapped for placement of his fistula (I promise I'll explain what this is soon) We continued regular tests of his urine but numbers continued to be steady. The bad ones even dropped a little but as Rob continually reminded me, they would never go to a good place. We met with a dietitian, who didn't know how to handle vegetarians especially with the renal failure diet which needs high proteins but low phosphates and potassium (a challenge to be sure.)
The doctors finally decided that as long as we set up an appointment with both our general practitioner, and a nephrologist there was no reason to keep him there. We LOVED the nephrologists who had seen Rob in the hospital yet she told us to stay at UW. Every someday moment we were headed for could be dealt with better at UW, and she was based out of Harbor View. This is when we learned the Dr. Kim Muczynski was still there and somehow we got an appointment with her.
For our final check out since our head doctor still had a cold and wasn't allowed on our floor we ended up in a conference room. At this time we went over everything they felt we should know. This included cutting as much potassium out of our diet as possible, and building his iron. Now potassium is in EVERYTHING. Some of the things to avoid oranges, tomatoes, potatoes, the list goes on and on. Having had iron deficiency during my pregnancy I instantly had a red flag raise when they wanted him to take iron which is notoriously hard for the body to absorb in pill form, so to help you take something with Vitamin C say . . . Orange Juice. I raised the question and stumped the attendees. This wasn't the first time for this group that what they were telling us to do didn't add up, but it wasn't till we were home that I realized how much. Since they knew we were going to be getting Rob listed, they gave him a bunch of immunizations and boosters and prescriptions for pain then sent us home.
Up Next: Getting used to the "new normal"
Saturday, July 28, 2012
Our First Someday Moment
Life is full of someday moments but until this started, I never thought of them in medical terms. The hubby has known since early on (and long before we were together) that he had PKD. Its been something that he and his family have dealt with including his grandmother doing dialysis in their home, and his mother have two kidney transplants. He was well aware of what his future held, but it was always "someday." When we started to date 12 years ago one of the first things I told him was that I wanted kids. His response was "I have polycystic kidney's, and there is a 50 percent chance I will pass it on." He then went on to explain that "someday" he would need dialysis and a transplant. While we never forgot it wasn't something that we really talked about. In hind sight I probably should have started learning more then about what my future held but "someday" seemed so far off.
Over the course of these past 12 years I have watched him suffer through the pain of cyst bursts, and learned to anticipate them by watching his mood swings. There was always a bout of depression and anger that went with each cyst and it varied in intensity depending on how much his body chemistry was off. There were times he would have a cyst burst monthly and then he would go 6 months before another one. It got to the point for me this was normal. When his sister, who also has PKD, and I discussed it she was in shock. "He shouldn't be rupturing that much!" I felt horrible, I didn't know this wasn't normal and that I should have been pushing him to go to a doctor. In fact in some ways I had gotten complacent. I knew he was in pain but he hid pain so well I never truly understood how much. Periodically it would get really bad and the pain would last longer than it should. He would then start bringing up "we might end up in the emergency room tonight it might be infected." The next day I'ld ask, and it would have dulled enough and that was the end of that.
December of 2011 was another of these "more severe" episodes. I figured we were headed into our normal cycle. To my surprise he actually called a doctor. Sadly he had the type of experience that many PKD patients have, and hung up before making an appointment. Even though PKD affects so many people not much is known about it, even within the medical community. It is often brushed aside as something else, and not considered to be that serious. In fact most doctors just nod their heads even though they don't actually know anything about it. This is what happened 15 years ago, and the reason behind the fact we didn't have a general practitioner for him. (FLASH BACK) He went in for severe abdominal pain and told the doctor "I have polycystic kidneys and I'm pretty sure I'm having a bad rupture." He was treated for indigestion and sent home after overhearing the doctor mock him in the hallway as a wimp. That night he was back in the emergency room with a severe internal infection, due to a kidney cyst rupture. Two good things that came out of this: he met Dr. Kim Muczynski and became a patient of hers, and when he went to pay the bill that same doctor saw him and joked "how did that indigestion work out" to which he replied "not so good ended up in the emergency room with an internal infection."
For a few years he was able to stay with Muczynski and things mellowed out Yet when I had met him he had lost insurance, and its a bit pricey to see a specialist with out it. Between that and how hard it was to make an appointment (she only saw him and maybe one other as a general practitioner) he stopped going, and the fear of repeating this story brings us back to December 2011. After a call to me in which I reminded Rob of the good experiences I had had with the clinic he called again, and got an appointment made for that afternoon which he wanted me to join him on.
When he asked I'll admit I rolled my eyes. I knew he had our youngest, and that can be challenging, but I was in the middle of a major project at work and had missed a large portion of that week already. I didn't feel professionally I had the time to leave. I went to my boss who having had his own share of medical issues told me to go, I would regret it if I didn't. So Rob picked me up and we headed off. We sat in the room and answered LOTS of questions, (including if Rob was pregnant) Dr. Sheffield at the UW Ravenna clinic actually sat and listened to Rob. She asked about the disease and the pain he was in. She recommended pain medication and Rob instantly tensed up, he's not one who looks to drugs for pain manegment. She saw his reaction and asked if he would take the pain medication if she prescribed. When he replied to the negative she said, "we'll discuss that later" and continued with the exam. She learned why he hadn't been to the doctor in 15 years (the above story that we told 5 times over the next two days.) Then prior to sending us down the hall for a blood draw she looked at Rob and started the discussion about the benefits of pain medication. "Your body needs sleep to help fight infection, when you are in pain you aren't going to sleep and your body needs the rest!" Rob looked at her and said "I never thought of it that way." She had given him a reason to take medication that made sense. With some sleep and drugs it looked like we were probably going to be okay. We headed for standard blood draw and tests, and then I went back to work.
I made it back to be in time for a rehearsal and I thought the episode was behind us, and was frustrated that I had been drug away. After work we went to the grocery store, life was returning to normal. We got to Walgreens to pick up his prescription when the sky started to fall. His phone rang and it was Dr. Sheffield and she asked what our evening plans were. His blood work came back much worse than anticipated and after a chat with another doctor friend they both felt we needed to get to the hospital. So we wouldn't have to wait in the ER she said to wait by the phone and she would get us set up with admissions. We went home and had dinner trying to pretend things were normal. Calls to my parents were made so the kids had someplace to stay, as well as to our nanny to see if she could pick the boys up and watch them the next day. Calls were made to my work letting everyone know I wasn't coming in, and Rob's canceling gigs. So by the time Dr. Sheffield called again with a time we were as ready as we could be, without freaking out completely. Her parting words to Rob after that final phone call was "I'm so glad you came in today. It probably saved your life" . . . .
NEXT UP Our first hospital stay.
Over the course of these past 12 years I have watched him suffer through the pain of cyst bursts, and learned to anticipate them by watching his mood swings. There was always a bout of depression and anger that went with each cyst and it varied in intensity depending on how much his body chemistry was off. There were times he would have a cyst burst monthly and then he would go 6 months before another one. It got to the point for me this was normal. When his sister, who also has PKD, and I discussed it she was in shock. "He shouldn't be rupturing that much!" I felt horrible, I didn't know this wasn't normal and that I should have been pushing him to go to a doctor. In fact in some ways I had gotten complacent. I knew he was in pain but he hid pain so well I never truly understood how much. Periodically it would get really bad and the pain would last longer than it should. He would then start bringing up "we might end up in the emergency room tonight it might be infected." The next day I'ld ask, and it would have dulled enough and that was the end of that.
December of 2011 was another of these "more severe" episodes. I figured we were headed into our normal cycle. To my surprise he actually called a doctor. Sadly he had the type of experience that many PKD patients have, and hung up before making an appointment. Even though PKD affects so many people not much is known about it, even within the medical community. It is often brushed aside as something else, and not considered to be that serious. In fact most doctors just nod their heads even though they don't actually know anything about it. This is what happened 15 years ago, and the reason behind the fact we didn't have a general practitioner for him. (FLASH BACK) He went in for severe abdominal pain and told the doctor "I have polycystic kidneys and I'm pretty sure I'm having a bad rupture." He was treated for indigestion and sent home after overhearing the doctor mock him in the hallway as a wimp. That night he was back in the emergency room with a severe internal infection, due to a kidney cyst rupture. Two good things that came out of this: he met Dr. Kim Muczynski and became a patient of hers, and when he went to pay the bill that same doctor saw him and joked "how did that indigestion work out" to which he replied "not so good ended up in the emergency room with an internal infection."
For a few years he was able to stay with Muczynski and things mellowed out Yet when I had met him he had lost insurance, and its a bit pricey to see a specialist with out it. Between that and how hard it was to make an appointment (she only saw him and maybe one other as a general practitioner) he stopped going, and the fear of repeating this story brings us back to December 2011. After a call to me in which I reminded Rob of the good experiences I had had with the clinic he called again, and got an appointment made for that afternoon which he wanted me to join him on.
When he asked I'll admit I rolled my eyes. I knew he had our youngest, and that can be challenging, but I was in the middle of a major project at work and had missed a large portion of that week already. I didn't feel professionally I had the time to leave. I went to my boss who having had his own share of medical issues told me to go, I would regret it if I didn't. So Rob picked me up and we headed off. We sat in the room and answered LOTS of questions, (including if Rob was pregnant) Dr. Sheffield at the UW Ravenna clinic actually sat and listened to Rob. She asked about the disease and the pain he was in. She recommended pain medication and Rob instantly tensed up, he's not one who looks to drugs for pain manegment. She saw his reaction and asked if he would take the pain medication if she prescribed. When he replied to the negative she said, "we'll discuss that later" and continued with the exam. She learned why he hadn't been to the doctor in 15 years (the above story that we told 5 times over the next two days.) Then prior to sending us down the hall for a blood draw she looked at Rob and started the discussion about the benefits of pain medication. "Your body needs sleep to help fight infection, when you are in pain you aren't going to sleep and your body needs the rest!" Rob looked at her and said "I never thought of it that way." She had given him a reason to take medication that made sense. With some sleep and drugs it looked like we were probably going to be okay. We headed for standard blood draw and tests, and then I went back to work.
I made it back to be in time for a rehearsal and I thought the episode was behind us, and was frustrated that I had been drug away. After work we went to the grocery store, life was returning to normal. We got to Walgreens to pick up his prescription when the sky started to fall. His phone rang and it was Dr. Sheffield and she asked what our evening plans were. His blood work came back much worse than anticipated and after a chat with another doctor friend they both felt we needed to get to the hospital. So we wouldn't have to wait in the ER she said to wait by the phone and she would get us set up with admissions. We went home and had dinner trying to pretend things were normal. Calls to my parents were made so the kids had someplace to stay, as well as to our nanny to see if she could pick the boys up and watch them the next day. Calls were made to my work letting everyone know I wasn't coming in, and Rob's canceling gigs. So by the time Dr. Sheffield called again with a time we were as ready as we could be, without freaking out completely. Her parting words to Rob after that final phone call was "I'm so glad you came in today. It probably saved your life" . . . .
NEXT UP Our first hospital stay.
Tuesday, July 24, 2012
Some background
Let me introduce myself, I work full time out of the house, I'm a full time mom of two GREAT kids, and as of December 2011 I became a full time caregiver to someone living with PKD. That last bit is slightly deceptive. My husband who has this disease is still working and able to care for himself, but we went from talking about the fact that "someday" he would be on dialysis and need a transplant to that dreaded day being here. What is PKD you may ask? Polycystic Kidney Disease or PKD is a life long genetic disease that attacks your kidney. It eventually leads to kidney failure and if not treated death. By "treated" I mean dialysis and transplant, there is no true treatment or cure for it. 1 in 500 people have this gene and there is a 50% chance of passing it to children. Out of the 1 in 500 that have it 50% will develop kidney failure before they are 50, and that is where we stand.
So tonight as I write this, I have my 3 year old cuddled in my lap while dad is at dialysis, and I have finally started the journey that has only been in my head since December when our first "someday" moment hit. When you live with a chronic degenerative disease you either live in fear everyday of your life, or you wait for the someday, milestone, moments and live your life. Rob (the hubby) has known since he was 17 that he had this disease. When he and I first started dating, he didn't hide the fact of this from me. The only concern he raised was the possibility of passing this on to any children we may have. I'll admit I didn't think about it much, except for his mood swings that seemed to be connected to cyst bursts, it never really affected our lives, till now. While I will be focusing on PKD, much of what I will be writing about is true of any caregiver. There will be rants, tears, frustrations, joy, triumphs and hopefully some insight to what we are going though. I know I'm not the only one who is facing trials, and I have had many people help me so far along this path, and hopefully I can pass some of that knowledge, as well as what we are learning on the fly. So welcome to the journey!
NEXT TIME: Our first someday moment.
So tonight as I write this, I have my 3 year old cuddled in my lap while dad is at dialysis, and I have finally started the journey that has only been in my head since December when our first "someday" moment hit. When you live with a chronic degenerative disease you either live in fear everyday of your life, or you wait for the someday, milestone, moments and live your life. Rob (the hubby) has known since he was 17 that he had this disease. When he and I first started dating, he didn't hide the fact of this from me. The only concern he raised was the possibility of passing this on to any children we may have. I'll admit I didn't think about it much, except for his mood swings that seemed to be connected to cyst bursts, it never really affected our lives, till now. While I will be focusing on PKD, much of what I will be writing about is true of any caregiver. There will be rants, tears, frustrations, joy, triumphs and hopefully some insight to what we are going though. I know I'm not the only one who is facing trials, and I have had many people help me so far along this path, and hopefully I can pass some of that knowledge, as well as what we are learning on the fly. So welcome to the journey!
NEXT TIME: Our first someday moment.
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