The whole transplant thing

I think for much of my life I ignored the fact that my mom was really sick. Part of that was my optimism (or unwillingness to face reality), and part of it, I’m sure, was because she always played it down, refusing to talk about it unless something was going on with it. She didn’t like for anyone to go to the kidney doctor with her; didn’t like to talk about how the appointments went, and if we asked she’d always say, “It’s fine.”

Then in August of 2005 none of us could pretend anymore. Her kidney function had been dropping slowly but steadily for a while, and the doctor said it was time to start the process to get her on the transplant list. She was at 14 percent kidney function then. She went through all the tests at Emory and got on the list. During this time, I vividly remember confronting the fact that my mother was mortal and that she had a serious, life shortening (potentially life threatening) disease and that even if she got a transplant she could die in the OR. Finally facing the fact that this was real and that she wouldn’t just keep trucking along was a painful, scary process, at least for me. I wasn’t ready to give my mother up. I still needed her around. And I’d always known that most likely my parents would die before me but knowing it and realizing it are two totally different things. I spent many nights crumpled on Caleb’s chest, crying.

Eventually, the immediate panic wore off and it was more of an underlying dread. I had time to adjust to the fact that she’d most likely get a transplant and that the surgery, although possibly life threatening, had MUCH more of a chance of making her better than anything else. So I was excited and hopeful (and very tired of waiting for a donor). Months went by. Then we passed the year mark. In retrospect, I feel like we as a family should have explored the possibility of living donors who weren’t relatives. However, I think Mom would have gotten mad at us had we just sent out random letters or e-mails to friends and family asking them to get tested. If she has to get another transplant down the road (which is pretty likely, actually), I am TOTALLY going to ask friends/family if they want to get tested whether she wants me to or not. Anyway, back to the relevant discussion. At the year mark, I think we all started to get a little worried. They had said 8 to 9 months…and it had been longer. And her kidney function was hovering dangerously near 10% (that’s when they start considering dialysis, and people who have ever been on dialysis don’t do as well with transplants as those who haven’t).

November 2006. Still no word of a transplant. Her nephrologist scheduled a dialysis workup appointment for the Monday after thanksgiving day. The news of that was a huge blow to me—I can only imagine how Mom must have felt. All that waiting, kidneys hanging in there, and now with no transplant, having to consider dialysis and possibly decrease her chances of getting a successful transplant.

I must say, transplant and kidney stuff aside, this particular month was one of the most stressful of my life. I was about a month from graduating college, had no motivation due to all the turmoil in my life due to relationship worries and stress from school, and was borderline behind on schoolwork. I went home over thanksgiving with the intention of catching up. But of course I procrastinated the first day (Tuesday), because I’d just gotten home that evening! So Wednesday I was at Harry T’s in Carrollton getting my oil changed and car washed. My phone rang, and it was Amie. She almost never calls me from her cell so I answered it. She asked where I was and I told her. Recognizing that something was off (she sounded REALLY strained) I asked what was wrong and she said Emory had called and said Mom might have to come up there that night. I don’t remember the rest of the conversation. Feelings washed over me in rapid succession: relief, crazy screaming tearful joy, stark terror…I wanted to vomit. I told Harry’s people not to wash the car, just finish the oil and hurry. And I left. I got home (Mom was at David and Amie’s house—we were all going to have dinner there that night and she’d gone down early to help cook and help with Jenny). Daddy was asleep since he’d worked the night before. I decided not to wake him up in case it was a false alarm. (I did, however, sneak into his room and put the cordless phone RIGHT NEXT TO HIS FACE--you know, just in case). Then I called Mom and asked if she wanted me to pack a bag or anything just in case (meanwhile detachedly thinking, wow, we should have already done this—we knew it was coming and didn’t know when, like a baby, and you pack bags when you’re about to give birth…why the hell didn’t we??) and she said yeah so I packed a bunch of shit in a hurry and drove to Temple (David and Amie’s house) to wait with them. On the way there, I laughed, I cried, I prayed—and then I realized that if I prayed for her to get a kidney I was most likely praying for someone else to die. That made me stop in my tracks. I immediately stopped praying for her to get a kidney and instead prayed for God (assuming he’s up there listening) to do whatever he needed to do, but I was not going to pray for someone else to die.

Over the course of the afternoon/evening, Mom and Amie and I cooked dinner, Emory called to get height/weight/other info, we ate dinner, they called again just to say they didn’t know yet, Mom didn’t eat in case she had to have surgery, and we waited. Mom got a shower, in case she wouldn’t be able to the next few days. And we waited some more. I didn’t and couldn’t eat much because it all stuck in my throat. I seriously considered puking a couple times. At about 8:30, they called and said, come. We freaked out. It was the night before thanksgiving at 8:30 and we needed to be in downtown Atlanta, and who knew what traffic would be like?? We devised a plan. Mom and I would be in my car, David in his truck. David would lead because he could ride people’s bumpers with flashers on and flash his bright lights and presumably they’d be more intimidated by his truck and get over, out of the way. Halfway there (I told Mom we weren’t going over ninety, but really I think we were around 110 most of the time) the traffic sign showed a traffic jam on I-20. David called and we revised the plan: get on 85 north and let me be in front to weave through cars (carefully, of course) and go that way. We made it in less than an hour. Maybe even 30 minutes, I’m not sure. It’s kind of a blur.

After we’d been there an hour or so, we were told that the surgery wouldn’t be till the next morning and that if Mom wanted to eat she needed to before midnight. By then, Melissa and Derek were there so we (along with David) left to find food while mom got tests and checked in. We brought back McDonalds and all ate crowded in the room. Daddy found someone to work for him for a few days (he wasn’t off that week) and was waiting on them to get to the hospital in Rome and relieve him so he could come back to Atlanta. David left about midnight. Derek left at some point, don’t really remember when. When Daddy finally got there about 2 am, Melissa and I went to her house to sleep for a little while. On the way to her house, Mom called and said they’d postponed surgery and we didn’t need to be back at the hospital till eight or so.

Suddenly, it was five AM and Melissa was shaking me awake. When I woke up enough to realize what was going on, I understood that we needed to leave RIGHT THEN, that they were taking Mom back for prep at about 6:30 and if we didn’t hurry we might not see her before the surgery. We got there at six and sat around with her for a little while. Caleb came and sat with us. Then it was time for her to go be prepped for surgery. Watching them wheel her out and not dissolving into a crumpled sobbing heap on the floor was the single hardest thing I’ve ever done. Daddy went down there with her and the rest of us commenced many hours of waiting. I wanted to fall apart. I am SO GLAD that Caleb was there. To this day I wonder if he knows how much I needed him; couldn’t have done it without his strength.

Finally, they were done and she came back to the room. She was in A LOT of pain. Later we found out the pain was from the catheter, not the surgery, which explained a lot. Unfortunately it took a few days to realize that and by then we were all afraid she wasn’t going to recover well. On top of the fact that the kidney wasn’t working like it should’ve. Those three days were some of the most tense in my life. She didn’t feel any better, she felt like she’d been hit by a truck, the kidney wasn’t working and I could sense that we were all worried and she was giving up mentally. Then her blood sugar was high and I think that was pretty much the straw that broke the camel’s back for her. Somehow, Daddy—whether by force or coercion—MADE her try. Made her walk around the floor, made her try to use the restroom, made her try to eat and drink. Finally around the third day, the kidney started producing, they took the catheter out, she successfully navigated the restroom and began feeling better.

During this time, I didn’t do any schoolwork, of course. But it all turned out ok eventually; I just didn’t get much sleep the next few weeks.

After Mom got home, I thought everything was just great…until I realized she was very quiet and withdrawn and she shook a lot. I didn’t realize how different she felt until she told me one time she liked sleeping the most, because in her dreams she was really herself. I was horribly afraid she’d get depressed or give up, and for a few months I worried about it and she didn’t seem to be herself at all. Then one random Sunday I was at home for family dinner (I can’t believe she still cooked for us all every Sunday feeling like that. But maybe we gave her a sense of normalcy she didn’t feel the rest of the time. We tried to offer help many times because she was shaking so much, but she usually refused and tried her hardest to do it herself) and I looked at her and gasped. She was all, “What is it? A spider?? Where?” and I said, “Mom! You’re not shaking!” Turns out she randomly woke up one day and was herself and wasn’t shaking anymore. It was AWESOME. I didn’t realize how different she was until she was normal again.

Things trucked along for a while, and then suddenly she got CMV (cytomegalovirus). (Well, ok, she’d had a fever for about three weeks so she got labs done and that’s what it was). At the time of the transplant, everyone knew (transplant team, doctors, nurses, and they told us too) that the donor had had it before and Mom hadn’t so she didn’t have any antibodies. They didn’t seem too concerned about it though (she would be on an antiviral for a while after the transplant) so we weren’t either. Apparently, they ALL forgot to start testing for levels of the virus immediately after she went off the antiviral drug and she just hadn’t been tested for it. At all. Until she called them the FOURTH TIME complaining that she’d had a mild fever for 18 days and then for a week it was above 101. THEN they finally decided to make her come in and do labs (just normal labs, they STILL hadn’t realized they hadn’t been testing for CMV and should’ve). They called her and told her to come do more labs the next day to test for CMV because her white blood cell count was up and she had waay to much Rapamune in her system (apparently CMV screws with the liver and it’s ability to metabolize things, like medicine). And not to take Tylenol so as not to do permanent damage to her liver. So she went the next day and they tested for CMV. The nurse called her that afternoon and said she had it, and then went on to say something to the effect of: we should have been testing your CMV levels since you went off the antiviral in May, I can’t figure out why we didn’t. They decided to put her back on the antiviral pill and hope that fixed everything. So far it has. But I am still pretty torqued over the fact that they were completely delinquent in managing a pretty critical part of Mom’s care. CMV can be pretty freaking serious and can cause all sorts of organ damage, and they KNEW the donor had had it and Mom hadn’t and they should have been testing for it. And they (doctors in general) get all huffy when patients/their families ask probing questions or ‘why’ questions or ‘shouldn’t you do ___?’ questions. THIS is why, people. I like the ones that don’t get offended when patients ask lots of questions. I think that’s going to be my criterion for picking doctors from now on. (And don’t worry, I am ALWAYS polite and tactful when I ask—but I still ask). But I digress, again.

So now Mom doesn’t have any trace of CMV in her system, she feels like herself, her cysts have shrunk markedly and she can eat protein again (just not much sugar b/c the prednisone they have her on for anti-rejection is screwing with her ability to process sugar and she’s taking insulin pills, which she hates, but at least at this point it feels like a fair trade-off). All in all, it’s pretty good so far.

I’ve been meaning to post about the whole experience for several reasons…so I won’t forget, to get it off my chest, and just in case people wanted to know. I would like to see my family evolve somewhat such that we’re not all off in our own little hole when it comes to medical issues…and Mom has been the hardest one to crack. Sometimes I wonder how she made it through all these years and especially the transplant essentially alone. She never sought out PKD support groups or wanted to go to the transplant support groups at Emory. Still doesn’t. I told her several times if she ever had any desire to go to one I’d go with her and would be very glad to do it…but I think she just deals with these things differently. If it were me, I’d be seeking out all the people in my boat that I could, just to know what to expect and have people in my life that totally, completely understand in ways that my unaffected friends/family couldn’t. (I accidentally did that with my hearing issues in college, and to this day I have a bond with the Sound Off people…something about shared differences brings people together).

Ok. I’m done. I don’t think I left anything out.