written on September 29, 2014
I had a thought over the weekend that maybe I should write down the expectations I have from the kidney transplant – basically, the things I hope will get better afterwards.
I guess it’s like my wish list of what I’d like my “new normal” to be. I really hate thinking about it that way, because I’d rather that everything just go back to the way it was before renal failure. I know that won’t happen. The immunosuppresants I’ll be on for the rest of my life will see to that. But I do plan on making the best of it.
For starters, the main thing I would love to get from a new kidney is a good night’s sleep. I would love to be able to sleep for 6-8 hours straight through without having to get up to use the bathroom. Is that even possible with a transplanted kidney? I’m not sure. I don’t know how long my old kidneys will last (they won’t be removed when the new kidney is inserted). And they are the current reason I’m up every 90 minutes or so every night. If they’re still in me and still have some function left, will their poor functioning make me continue to get up constantly? Definitely hoping the answer is no, that the new kidney will take over and let me sleep again.
I would also love to be able to stay warm on my own again. I’ve been anemic for so long that I don’t even remember what it’s like to be in an air-conditioned room without a sweatshirt on. I have to carry one with me everywhere I go or else I’ll end up being cold, sometimes to the point of shivering. As someone who used to run “hot” as I like to call it, being anemic has definitely been a life-changer, and not in a good way.
Could my blood pressure please go back to being normal without the help of any medications? The hypertension cardiologist who’s been monitoring me said most likely I’ll be on one or two medications for several weeks after the surgery, just to give the new kidney a break right out of the gate. I get that. That makes perfect sense, but I would love to see the new kidney come in and kick some butt and just take over and make my blood pressure good again. Again, I have to worry about the old kidneys though. They’re not doing well and I’m pretty sure their failure is the primary cause of my hypertension. If they’re still around, will my blood pressure stay high? Are they going to cancel out any good the new kidney could do?
How about energy? I would love, love, love to get my energy levels back. To not be so fatigued every day. To not feel like sleeping constantly. I don’t remember the last time my energy levels were good. My previous nephrologist used to tell me that renal failure would creep up on me, that I would continue to feel fine until the day I didn’t. But because it would be so gradual I wouldn’t remember what life used to be like before the failure. At the time I didn’t believe him – how could you have renal failure and not know it? Because the human body has an amazing ability to adapt to things. And mine did, just as he predicted. When was the last time I felt energized and alert, ready to tackle anything the world threw at me? I honestly don’t remember.
I’m really looking forward to being able to eat and drink whatever I want again. I haven’t had oranges or orange juice since May. Or bananas, or avocados, or tomato-based sauces or those star fruits that I have never eaten (because they could kill me). It will be so wonderful to not have any dietary restrictions that are based on potassium, phosphorus or sodium levels. My wife asked me what is the first food I’m going to want after the surgery (well, a few days afterwards – apparently we’ll both be on a liquid diet for at least two days after the surgery). My answer, as bad as it is… coca-cola. For some reason not being able to drink caramel-colored carbonated beverages is something I miss a lot. But with the horrible aftertaste I get from the clonidine in my system, something tells me it will be at least a week after the surgery before I’ll even want to try one. And then only if I’m no longer taking clonidine.
Oh, and one more huge thing… taking a shower. OMG! I cannot wait to be able to step into a shower and just let the water run all over my body. Washing my hair, washing my catheter exit site, just standing in the water. It adds to my insomnia some nights when I think about how wonderful it’s going to be to not have to sponge bath any more (I haven’t taken a shower since May because my catheter can’t get wet (well, I took three of them in June after I figured out how to wrap my catheter in a waterproof bag and seal the heck out of it with waterproof tape; but it took almost 20 minutes to wrap the catheter and then another 30 minutes after the shower to remove the waterproof dressing and redress the thing)). If it didn’t take so long to make it waterproof, I probably would have done it more frequently, but at some point I decided it wasn’t worth the risk. If I didn’t wrap it tight one time, and it got wet, and then it got infected, and I got sick… well, let’s just say thankfully none of those things happened. But once they pull this catheter out (which won’t be for four or five days after the transplant), if the doctors say it’s okay, I’m going to spend some time in my new favorite hangout – the shower stall.
I know there are other things, smaller things, but I think this list pretty much covers it. All of these things I took for granted for the first 40 years – hopefully I’ll never forget what life was like without them. Because I really hope I never have to go through any of this again.