In case you didn't notice its a new year, and with that the obligatory new years resolutions. One of mine is to write more so I start off with this short post.
What a year 2015 was. I still am feeling a little blah there has been so much joy and progress personally and for me and my family, and yet it has been filled with challenges and much tragedy.
I want to be happy in the personal successes I have seen, how good of shape I am in (I actually like to run, who knew) and watching Owen's successes in chess, music, theater and well just about anything that kid puts his mind to. The progress on getting our house into some semblance of a home, and Robby's health is beyond believing. If you didn't know he had to take pills every 12 hours you wouldn't believe he had a transplant a mere two years ago. There are so many who live such a different path where transplant is not the complete success that we have seen, and I am grateful that it is one less stresser in our lives, and yet . . .
Erika our amazing donor was diagnosed with cancer (thank god she is cancer free but seriously), my Grandmother who has been a rock for me the last few years has had her mind taken by alzheimer's, and my brother who I love so much and am so proud of lost his battle to depression.
I am reminded why I started to write, when everything we were going through was so overwhelming that the only place I could start thinking straight was when I was writing. I again feel that pull. A new year is a time of resolutions, of new beginnings, of hope. But I am starting with a memorial, a scattering of ashes and a goodbye I'm not ready to give. In the next year I want to start to reclaim some of what made me happy in 2015. So here is what I have learned:
I LOVE TO RUN, I have spent to many years convincing my self differently and now as I start this year with two races already signed up for and at least 4 more I want to do, I will run.
I CAN'T DO IT ALL, I have for so long, but, that isn't how I want to live. I need to say no, I'm allowed to say no. I WILL SAY NO
MY FAMILY IS MY LIFE, no matter what I do to make a living, family is what is important, and I am not only talking about blood relations, family is more than blood and I have learned that so much this year. I have many more close friends, people who will never know how much I rely on them and I only hope I give at least a fraction back. To all those who have supported me, my family, I will spend more quality time with you (some of it while running.)
I HAVE THINGS TO SAY, For you who actually read this (which I appreciate) this means more writting, I am unsure where this will go, I have a feeling I will be delving into some illnesses that have marred 2015, as well as what I am doing. We will see where the key board takes me. I know that my resolution will be to write, I find when by the time I've neared the end I start to realize why writing is important. I do hope to finish some of the PKD and transplant story, but also what the follow up has been. When I picked the title of When is Someday it represented the feelings we had about PKD. Everything we had in store was a someday, dialysis, transplant, recovery. That hasn't changed, there is always a someday and I now see that expanding in a new way. So on to 2016, my new someday.
Friday, January 1, 2016
Thursday, April 10, 2014
I think I'm back
It has been over a year since my last post and so much has happened. I went into this process with hope I would write every week, and in writing explore my feelings, issues, concerns. I would learn how I was truly handling everything and be able to express myself in a safe environment without fear of criticism. That is exactly what happened, it felt so wonderful sharing our story, helping others see through this medium what I wasn't ready to share face to face.
Then life happened.
It sounds trite, the simple excuse that everyone gives when something they wanted to do goes by the wayside. "I'm to tired", or "to busy" or "need to do . . ." the list never ends. I would read other blogs and remember how much I enjoyed writing. I would talk with friends and say, I really should get back to writing but never did.
What changed you ask? Someday came, Robby got a kidney. (THANK YOU ERIKA CHAMBERS)
We have spent the last two years waiting and wondering and then boom everything started happening at once. As a caregiver, mother, wife my focus had been on everything around me and even though I had convinced myself that I had enough of an outlet to keep me as me, I learned very quickly that was a lie. My life has been a string of Dr. appointments, work, children, everything with the overshadow of how would it fit in with the medical stuff, dialysis etc. I was just waiting until Robby was better so I could start life again. I kept saying we had to "find our new normal" but dialysis put such a monkey wrench in everything that I was unable to let myself settle into that "new normal."
Well now is the time. I am back to writing (I think) I am back to finding me again. I am starting to pursue my dreams that don't include getting Robby a kidney (though to be perfectly honest it was one of the biggest dreams I had.) I have started running and training for a 5K I am getting ready for my kidney tattoo (I have worked just as hard as he has so I deserve a kidney as well right?) I am sorting our finances and getting ready to live life to its fullest, not just talk about living life. I still want to tell the story of the last two plus years, but it will be a little more disjointed and not chronological. I will write about what our someday is looking like, and the fact that we are now on to the new "when is someday." What all of this means to me, our kids, and life and hopefully through writing I can explore my feelings, issues and concerns and learn how I am handling everything. Those of you along for the ride I apologize in advance :)
Then life happened.
It sounds trite, the simple excuse that everyone gives when something they wanted to do goes by the wayside. "I'm to tired", or "to busy" or "need to do . . ." the list never ends. I would read other blogs and remember how much I enjoyed writing. I would talk with friends and say, I really should get back to writing but never did.
What changed you ask? Someday came, Robby got a kidney. (THANK YOU ERIKA CHAMBERS)
We have spent the last two years waiting and wondering and then boom everything started happening at once. As a caregiver, mother, wife my focus had been on everything around me and even though I had convinced myself that I had enough of an outlet to keep me as me, I learned very quickly that was a lie. My life has been a string of Dr. appointments, work, children, everything with the overshadow of how would it fit in with the medical stuff, dialysis etc. I was just waiting until Robby was better so I could start life again. I kept saying we had to "find our new normal" but dialysis put such a monkey wrench in everything that I was unable to let myself settle into that "new normal."
Well now is the time. I am back to writing (I think) I am back to finding me again. I am starting to pursue my dreams that don't include getting Robby a kidney (though to be perfectly honest it was one of the biggest dreams I had.) I have started running and training for a 5K I am getting ready for my kidney tattoo (I have worked just as hard as he has so I deserve a kidney as well right?) I am sorting our finances and getting ready to live life to its fullest, not just talk about living life. I still want to tell the story of the last two plus years, but it will be a little more disjointed and not chronological. I will write about what our someday is looking like, and the fact that we are now on to the new "when is someday." What all of this means to me, our kids, and life and hopefully through writing I can explore my feelings, issues and concerns and learn how I am handling everything. Those of you along for the ride I apologize in advance :)
Wednesday, October 10, 2012
Our First Surgery
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.
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.
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
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