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
Thursday, August 30, 2012
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
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