I've never truly been through the standard admitting process. The three times I've stayed in a hospital were the births of my two sons (I was in labor or going to be induced we worried about the admitting later) and my youngest who tried to be a rock-star and choked on his on vomit, emergency room complete with ambulance ride. So actually siting at the admitting desk was a bit strange. The hullabaloo of getting the kids taken care of and what to pack and calling out of work had occupied so much of my brain that it wasn't until we were sitting there that the seriousness of what was happening had started to sink in. Rob had spent the last few hours repeating the number 7 I knew it was a bad number and had him stressed out. Yet in my mind we were there for observation a quick overnight and he would be back on his feet. It never crossed my mind that we were at a someday moment.
So, that number 7 was his creatinine count. Now the only real reference I had was from when I was pregnant. My creatinine had creeped up to 2 and it got the doctors worried about pre eclampsia so I knew 7 was a bad number. But what was creatinine? To be honest its still a little hazy for me but basically its a waste product that the kidneys filter out. If that number starts to creep you are heading for kidney failure. I got a sudden shock of seriousness. We had doctor after doctor come in and we explained the pain, why we were there, why it had taken us so long to come in, and yes we know he has polycystic kidneys. It was hard to keep repeating the story because each time it became more and more real. When we were finally set the nurse told Rob to eat up because after midnight, no more food. Now silly me honestly believed that it was for some kidney test my head wouldn't allow me to realize that they were getting him ready for emergency surgery in which a catheter for dialysis would be put in. The other complication added into this was his heart was showing signs of too much potassium, another issue kidney failure patients can have. We all know about how good potassium is for you, but should you have to much you can have a heart attack or stroke. AWESOME! something new to stress about. We "slept" if you can call it that. We were put in the transplant ward as it was the only place that had an opening (I know the irony) and since Rob had a slight cough he was in "quarantine" this meant anyone who came to see us had to robe up with mask glove In my case I got to sleep in a lovely yellow front robe, mask with plastic guard over my eyes and pink gloves. I was a sight! Since they were measuring fluid in and out I had to use a outside bathroom which involved talking all of my lovely garb off and then starting a new when I returned. I also found myself keeping a much closer eye on how Rob was sitting, moving, talking, moaning. anything that could help me understand where his pain was. He had spent the night before being mocked by our 3 year old who pretended to hiccup and then say "ow" just like daddy was. Every time the nurse came in and asked about how his pain was they always looked at me and I would respond "he's better he isn't doing as many of his tells." I became the pain meter because Rob is very "stoic" (one of my favorite nurses terms) when it came to pain. Looking back over the last 12 years I realized he has always just dealt with his pain, and hidden how much there really is.
So after a fitful night, we finally had the doctors come in for am rounds. At a teaching hospital like UW there are at least 4 doctors at any time. We had two attendees a nephrologist and the main doctor who in our case had a cold and wasn't allowed on our floor. We started with one of the attendees who came in to let us know what was going to happen. She caught Rob at a weak moment, and as he answered some of the usual questions he actually started to cry. Those tears got me I had never seen him cry over this problem of his. We still didn't know much but we knew it was serious. When the whole group came in, the nephrologist snuck in first and started explaining a bit of what was going on. Yes his creatinine was at 7 (almost 8) but had stayed steady over the night. He also wasn't showing other signs of failure, his appetite was there, he was still peeing, he wasn't showing water retention especially in his ankles. She looked at us and said "We think you've been at this number for a while" the urgency started to lift. We weren't headed into surgery yet. The scary part was the next number we heard 8%. His kidneys were functioning at 8%. I didn't know how to process that. The nephrologists smiled at us and explained that had we been in normal care we would have been working prior to this point getting his fistula put in and mentally preparing him for transplant and potentially dialysis. There was nothing accusatory in her manner, it was very matter of fact but caring. I liked her instantly. That couldn't be said of the next doctor we met. The lead of the two attendees came in with a swagger that drove me nuts. He spent so much time dictating what we were supposed to do, and where we were at with out really listening to our story. Since we hadn't been to a doctor in so long we obviously didn't know anything. He even went as far to try and tell Rob what a cyst rupturing would feel like. I watched Rob start to close down and not listen I started to get worried. I was grateful to the nephrologist who stepped in and stopped the doctor with one sentence "He has lived with this disease for the last twenty years and he of anyone in this room can explain what a cyst rupture feels like" This shut the doctor up. Of course he just started on another tangent. We were going to be there a second night even though he was steady, they wanted more observation.
The rest of that day and the next were a blur. I remember parts vividly and others mesh together. I spent a lot of time on the phone explaining to everyone what was going on. I think one of the hardest things as a caregiver is being the mouth piece. You are the one everyone turns to trying get information. It was hard for me to process things because I had to keep telling the story over and over, and never got the chance to just sit and deal. Thank god for my parents and nanny who just took care of the boys for those two days. I am also grateful to work for never asking and just letting me be gone, even though there was important things I was supposed to be helping with. I'm grateful for Facetime which helped us actually see our kids for however brief a time. It was hard being away from them, but I also dreaded how I was going to explain it to them especially my very precocious 6 year old. In a strange way time stopped for those two days, it was a bubble we lived in and the world just kept going without us. As things were wrapping up we learned more and more about what our next "someday" moment was going to be. He had his arm mapped for placement of his fistula (I promise I'll explain what this is soon) We continued regular tests of his urine but numbers continued to be steady. The bad ones even dropped a little but as Rob continually reminded me, they would never go to a good place. We met with a dietitian, who didn't know how to handle vegetarians especially with the renal failure diet which needs high proteins but low phosphates and potassium (a challenge to be sure.)
The doctors finally decided that as long as we set up an appointment with both our general practitioner, and a nephrologist there was no reason to keep him there. We LOVED the nephrologists who had seen Rob in the hospital yet she told us to stay at UW. Every someday moment we were headed for could be dealt with better at UW, and she was based out of Harbor View. This is when we learned the Dr. Kim Muczynski was still there and somehow we got an appointment with her.
For our final check out since our head doctor still had a cold and wasn't allowed on our floor we ended up in a conference room. At this time we went over everything they felt we should know. This included cutting as much potassium out of our diet as possible, and building his iron. Now potassium is in EVERYTHING. Some of the things to avoid oranges, tomatoes, potatoes, the list goes on and on. Having had iron deficiency during my pregnancy I instantly had a red flag raise when they wanted him to take iron which is notoriously hard for the body to absorb in pill form, so to help you take something with Vitamin C say . . . Orange Juice. I raised the question and stumped the attendees. This wasn't the first time for this group that what they were telling us to do didn't add up, but it wasn't till we were home that I realized how much. Since they knew we were going to be getting Rob listed, they gave him a bunch of immunizations and boosters and prescriptions for pain then sent us home.
Up Next: Getting used to the "new normal"
Tuesday, July 31, 2012
Saturday, July 28, 2012
Our First Someday Moment
Life is full of someday moments but until this started, I never thought of them in medical terms. The hubby has known since early on (and long before we were together) that he had PKD. Its been something that he and his family have dealt with including his grandmother doing dialysis in their home, and his mother have two kidney transplants. He was well aware of what his future held, but it was always "someday." When we started to date 12 years ago one of the first things I told him was that I wanted kids. His response was "I have polycystic kidney's, and there is a 50 percent chance I will pass it on." He then went on to explain that "someday" he would need dialysis and a transplant. While we never forgot it wasn't something that we really talked about. In hind sight I probably should have started learning more then about what my future held but "someday" seemed so far off.
Over the course of these past 12 years I have watched him suffer through the pain of cyst bursts, and learned to anticipate them by watching his mood swings. There was always a bout of depression and anger that went with each cyst and it varied in intensity depending on how much his body chemistry was off. There were times he would have a cyst burst monthly and then he would go 6 months before another one. It got to the point for me this was normal. When his sister, who also has PKD, and I discussed it she was in shock. "He shouldn't be rupturing that much!" I felt horrible, I didn't know this wasn't normal and that I should have been pushing him to go to a doctor. In fact in some ways I had gotten complacent. I knew he was in pain but he hid pain so well I never truly understood how much. Periodically it would get really bad and the pain would last longer than it should. He would then start bringing up "we might end up in the emergency room tonight it might be infected." The next day I'ld ask, and it would have dulled enough and that was the end of that.
December of 2011 was another of these "more severe" episodes. I figured we were headed into our normal cycle. To my surprise he actually called a doctor. Sadly he had the type of experience that many PKD patients have, and hung up before making an appointment. Even though PKD affects so many people not much is known about it, even within the medical community. It is often brushed aside as something else, and not considered to be that serious. In fact most doctors just nod their heads even though they don't actually know anything about it. This is what happened 15 years ago, and the reason behind the fact we didn't have a general practitioner for him. (FLASH BACK) He went in for severe abdominal pain and told the doctor "I have polycystic kidneys and I'm pretty sure I'm having a bad rupture." He was treated for indigestion and sent home after overhearing the doctor mock him in the hallway as a wimp. That night he was back in the emergency room with a severe internal infection, due to a kidney cyst rupture. Two good things that came out of this: he met Dr. Kim Muczynski and became a patient of hers, and when he went to pay the bill that same doctor saw him and joked "how did that indigestion work out" to which he replied "not so good ended up in the emergency room with an internal infection."
For a few years he was able to stay with Muczynski and things mellowed out Yet when I had met him he had lost insurance, and its a bit pricey to see a specialist with out it. Between that and how hard it was to make an appointment (she only saw him and maybe one other as a general practitioner) he stopped going, and the fear of repeating this story brings us back to December 2011. After a call to me in which I reminded Rob of the good experiences I had had with the clinic he called again, and got an appointment made for that afternoon which he wanted me to join him on.
When he asked I'll admit I rolled my eyes. I knew he had our youngest, and that can be challenging, but I was in the middle of a major project at work and had missed a large portion of that week already. I didn't feel professionally I had the time to leave. I went to my boss who having had his own share of medical issues told me to go, I would regret it if I didn't. So Rob picked me up and we headed off. We sat in the room and answered LOTS of questions, (including if Rob was pregnant) Dr. Sheffield at the UW Ravenna clinic actually sat and listened to Rob. She asked about the disease and the pain he was in. She recommended pain medication and Rob instantly tensed up, he's not one who looks to drugs for pain manegment. She saw his reaction and asked if he would take the pain medication if she prescribed. When he replied to the negative she said, "we'll discuss that later" and continued with the exam. She learned why he hadn't been to the doctor in 15 years (the above story that we told 5 times over the next two days.) Then prior to sending us down the hall for a blood draw she looked at Rob and started the discussion about the benefits of pain medication. "Your body needs sleep to help fight infection, when you are in pain you aren't going to sleep and your body needs the rest!" Rob looked at her and said "I never thought of it that way." She had given him a reason to take medication that made sense. With some sleep and drugs it looked like we were probably going to be okay. We headed for standard blood draw and tests, and then I went back to work.
I made it back to be in time for a rehearsal and I thought the episode was behind us, and was frustrated that I had been drug away. After work we went to the grocery store, life was returning to normal. We got to Walgreens to pick up his prescription when the sky started to fall. His phone rang and it was Dr. Sheffield and she asked what our evening plans were. His blood work came back much worse than anticipated and after a chat with another doctor friend they both felt we needed to get to the hospital. So we wouldn't have to wait in the ER she said to wait by the phone and she would get us set up with admissions. We went home and had dinner trying to pretend things were normal. Calls to my parents were made so the kids had someplace to stay, as well as to our nanny to see if she could pick the boys up and watch them the next day. Calls were made to my work letting everyone know I wasn't coming in, and Rob's canceling gigs. So by the time Dr. Sheffield called again with a time we were as ready as we could be, without freaking out completely. Her parting words to Rob after that final phone call was "I'm so glad you came in today. It probably saved your life" . . . .
NEXT UP Our first hospital stay.
Over the course of these past 12 years I have watched him suffer through the pain of cyst bursts, and learned to anticipate them by watching his mood swings. There was always a bout of depression and anger that went with each cyst and it varied in intensity depending on how much his body chemistry was off. There were times he would have a cyst burst monthly and then he would go 6 months before another one. It got to the point for me this was normal. When his sister, who also has PKD, and I discussed it she was in shock. "He shouldn't be rupturing that much!" I felt horrible, I didn't know this wasn't normal and that I should have been pushing him to go to a doctor. In fact in some ways I had gotten complacent. I knew he was in pain but he hid pain so well I never truly understood how much. Periodically it would get really bad and the pain would last longer than it should. He would then start bringing up "we might end up in the emergency room tonight it might be infected." The next day I'ld ask, and it would have dulled enough and that was the end of that.
December of 2011 was another of these "more severe" episodes. I figured we were headed into our normal cycle. To my surprise he actually called a doctor. Sadly he had the type of experience that many PKD patients have, and hung up before making an appointment. Even though PKD affects so many people not much is known about it, even within the medical community. It is often brushed aside as something else, and not considered to be that serious. In fact most doctors just nod their heads even though they don't actually know anything about it. This is what happened 15 years ago, and the reason behind the fact we didn't have a general practitioner for him. (FLASH BACK) He went in for severe abdominal pain and told the doctor "I have polycystic kidneys and I'm pretty sure I'm having a bad rupture." He was treated for indigestion and sent home after overhearing the doctor mock him in the hallway as a wimp. That night he was back in the emergency room with a severe internal infection, due to a kidney cyst rupture. Two good things that came out of this: he met Dr. Kim Muczynski and became a patient of hers, and when he went to pay the bill that same doctor saw him and joked "how did that indigestion work out" to which he replied "not so good ended up in the emergency room with an internal infection."
For a few years he was able to stay with Muczynski and things mellowed out Yet when I had met him he had lost insurance, and its a bit pricey to see a specialist with out it. Between that and how hard it was to make an appointment (she only saw him and maybe one other as a general practitioner) he stopped going, and the fear of repeating this story brings us back to December 2011. After a call to me in which I reminded Rob of the good experiences I had had with the clinic he called again, and got an appointment made for that afternoon which he wanted me to join him on.
When he asked I'll admit I rolled my eyes. I knew he had our youngest, and that can be challenging, but I was in the middle of a major project at work and had missed a large portion of that week already. I didn't feel professionally I had the time to leave. I went to my boss who having had his own share of medical issues told me to go, I would regret it if I didn't. So Rob picked me up and we headed off. We sat in the room and answered LOTS of questions, (including if Rob was pregnant) Dr. Sheffield at the UW Ravenna clinic actually sat and listened to Rob. She asked about the disease and the pain he was in. She recommended pain medication and Rob instantly tensed up, he's not one who looks to drugs for pain manegment. She saw his reaction and asked if he would take the pain medication if she prescribed. When he replied to the negative she said, "we'll discuss that later" and continued with the exam. She learned why he hadn't been to the doctor in 15 years (the above story that we told 5 times over the next two days.) Then prior to sending us down the hall for a blood draw she looked at Rob and started the discussion about the benefits of pain medication. "Your body needs sleep to help fight infection, when you are in pain you aren't going to sleep and your body needs the rest!" Rob looked at her and said "I never thought of it that way." She had given him a reason to take medication that made sense. With some sleep and drugs it looked like we were probably going to be okay. We headed for standard blood draw and tests, and then I went back to work.
I made it back to be in time for a rehearsal and I thought the episode was behind us, and was frustrated that I had been drug away. After work we went to the grocery store, life was returning to normal. We got to Walgreens to pick up his prescription when the sky started to fall. His phone rang and it was Dr. Sheffield and she asked what our evening plans were. His blood work came back much worse than anticipated and after a chat with another doctor friend they both felt we needed to get to the hospital. So we wouldn't have to wait in the ER she said to wait by the phone and she would get us set up with admissions. We went home and had dinner trying to pretend things were normal. Calls to my parents were made so the kids had someplace to stay, as well as to our nanny to see if she could pick the boys up and watch them the next day. Calls were made to my work letting everyone know I wasn't coming in, and Rob's canceling gigs. So by the time Dr. Sheffield called again with a time we were as ready as we could be, without freaking out completely. Her parting words to Rob after that final phone call was "I'm so glad you came in today. It probably saved your life" . . . .
NEXT UP Our first hospital stay.
Tuesday, July 24, 2012
Some background
Let me introduce myself, I work full time out of the house, I'm a full time mom of two GREAT kids, and as of December 2011 I became a full time caregiver to someone living with PKD. That last bit is slightly deceptive. My husband who has this disease is still working and able to care for himself, but we went from talking about the fact that "someday" he would be on dialysis and need a transplant to that dreaded day being here. What is PKD you may ask? Polycystic Kidney Disease or PKD is a life long genetic disease that attacks your kidney. It eventually leads to kidney failure and if not treated death. By "treated" I mean dialysis and transplant, there is no true treatment or cure for it. 1 in 500 people have this gene and there is a 50% chance of passing it to children. Out of the 1 in 500 that have it 50% will develop kidney failure before they are 50, and that is where we stand.
So tonight as I write this, I have my 3 year old cuddled in my lap while dad is at dialysis, and I have finally started the journey that has only been in my head since December when our first "someday" moment hit. When you live with a chronic degenerative disease you either live in fear everyday of your life, or you wait for the someday, milestone, moments and live your life. Rob (the hubby) has known since he was 17 that he had this disease. When he and I first started dating, he didn't hide the fact of this from me. The only concern he raised was the possibility of passing this on to any children we may have. I'll admit I didn't think about it much, except for his mood swings that seemed to be connected to cyst bursts, it never really affected our lives, till now. While I will be focusing on PKD, much of what I will be writing about is true of any caregiver. There will be rants, tears, frustrations, joy, triumphs and hopefully some insight to what we are going though. I know I'm not the only one who is facing trials, and I have had many people help me so far along this path, and hopefully I can pass some of that knowledge, as well as what we are learning on the fly. So welcome to the journey!
NEXT TIME: Our first someday moment.
So tonight as I write this, I have my 3 year old cuddled in my lap while dad is at dialysis, and I have finally started the journey that has only been in my head since December when our first "someday" moment hit. When you live with a chronic degenerative disease you either live in fear everyday of your life, or you wait for the someday, milestone, moments and live your life. Rob (the hubby) has known since he was 17 that he had this disease. When he and I first started dating, he didn't hide the fact of this from me. The only concern he raised was the possibility of passing this on to any children we may have. I'll admit I didn't think about it much, except for his mood swings that seemed to be connected to cyst bursts, it never really affected our lives, till now. While I will be focusing on PKD, much of what I will be writing about is true of any caregiver. There will be rants, tears, frustrations, joy, triumphs and hopefully some insight to what we are going though. I know I'm not the only one who is facing trials, and I have had many people help me so far along this path, and hopefully I can pass some of that knowledge, as well as what we are learning on the fly. So welcome to the journey!
NEXT TIME: Our first someday moment.
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