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.
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