written on September 20, 2014
I can’t believe it’s been almost three weeks since I posted anything. It’s starting to affect my sleep.
I’ve had really bad insomnia the last three nights – last night I don’t think I slept at all. I mean, I never fell sleep. And I had to dialyze at 5 am this morning because I spent the day at Cedars yesterday going through my first drug treatment for the transplant (an IV infusion of the drug Rituxan over 6 hours – if you think sitting in a dialysis chair for 3 ½ hours is bad, try sitting in a chair for 6 hours while they pump a pretty nasty drug into you through an IV).
Maybe last night’s bad insomnia is just a side effect of that infusion. I hope tonight I’ll actually sleep. I’m getting tired of being tired all the time. Although I knew this would happen.
We finally managed to get my blood pressure under control last week. I saw the hypertension specialist on September 10 and he prescribed three new blood pressure meds and took me off of one other, so now I’m on 6 different medications just to treat my blood pressure (Carvedilol, Telmisartan (instead of Diovan), Amlodipine, Diltiazem, Clonidine, Guanfacine (only at night) and no more minoxidil). It's a bummer I'm back on Clonidine, but it's working. Actually, together they're all working – I wore a 24-hour blood pressure monitor on Thursday and my average pressure was 137/80 for the day. Awesome! I haven’t had a migraine either since we got it under control. But there are two main side effects of all these meds – fluid retention (I’ve been very heavy all week and my ankles no longer exist) and fatigue.
My son was home sick for 7 days in the last two weeks and taking care of him while I’ve been so tired has truly been difficult. Plus, the transplant center started me on my first immunosuppressant drug (Myfortic) right before he got sick. So I’ve also been worried about getting sick from him (oh, and Rituxan is also an immunosuppressant – it’s a bit different though – it prevents my body from forming antibodies. I need that so when the transplant happens I won’t have any antibodies in my blood stream that will immediately attack my wife’s kidney).
Aside from my son’s illness (it turns out he had fifth disease), it’s been a good last two weeks. The first week in September was not good – the migraines were clearly getting worse every time I dialyzed. Even though my blog post from September 8 (GOOD DAY) said I didn't have a migraine start during dialysis, one did start by the time I got home. And it was a bad one. I finally ended up taking some Excedrin Migraine because the cardiologist recommended it for the pain (I kept putting it off because it has Aspirin in it, which is bad for my kidneys, but the hypertension specialist told me the time to worry about my renal function is long past, so if excedrin migraine works, I should take it). Let me tell you, it works. Wonders! I feel groggy afterwards, but it's so nice to know there's finally a drug I can take to get rid of the pain. Yay!
Since I switched the meds that the hypertension doctor recommended, my blood pressure has been so much better. And figuring out how to get my blood pressure under control has helped me tremendously. This week I finally felt like I could return to work if I had to – but now I have appointments at Cedars pretty much every day until the surgery, so even if I had a job to go back to (my last job wrapped post at the end of July), I wouldn’t have the time. That’s okay, I’m ready for the surgery.
Even with all the good things happening this week, I’ve still got the stress of finding an apartment. I just sent four more requests out this morning through AirBnB – hopefully I’ll hear from some of them today. And state disability is giving me grief again. My previous nephrologist put my return-to-work date as Aug 30, knowing full well my surgery is in October. I had my new nephrologist fill out the Supplemental Continuance form, but clearly he didn’t fill out something they need because they processed the form two weeks ago but haven’t updated my claim to reflect additional weeks of payment. I tell you – dealing with dialysis is hard enough, especially with all the complications I’ve had, but then having to deal with the disability office on top of the disease is like torture. And let’s not forget the two little kids who are showing an immense amount of high-energy every day, and who love playing with daddy every chance they get.
All this to say the summer was supposed to be about resting and recuperating from the kidney failure – but in reality I’ve probably had a lot more stress than if I had just gone back to work. Oh well. The surgery is right around the corner. It’s been a long time coming, but I’m definitely ready for it.
And no, I’m not scared or anxious. I’m more anxious for my wife and kids – my wife because her surgery is much more difficult than mine (although her recovery period is shorter) and the kids because I won’t be able to see them for at least 8 weeks after the surgery day (the risk of infection is very high since I won't have an immune system. If I get sick in the first few months after the surgery, I will have to be hospitalized for weeks and there's a good chance I might not be able to stave of any infections at all, leading to the loss of the kidney and/or worse things).
As far as my own surgery, it can’t get it here fast enough. I don’t expect any complications (and I really hope there aren’t any) but I do expect that having a pre-owned kidney is going to make me feel a whole lot better all the time. And even though I’ll be on a lot of crazy drugs for the first 4-6 weeks, I’m hopeful I’ll be able to come off the worst of the blood pressure meds, maybe even all of them. It’s all one day at a time – I know I keep saying that, but it’s true. Since it’s already September 20, clearly the days are going by quickly. I can almost count them off with two hands – my excitement is building!