Last Tuesday I had a surgery to put a peritoneal window in my abdomen. You may recall that I had a procedure the week prior that put in a temporary drain to remove fluid from the fluid pocket that had formed around my kidney, which was putting pressure on the artery to my right leg and my ureter from the kidney. This surgery is the permanent replacement for that temporary drain.
The surgeon told me that it would probably hurt more, so I thought I was prepared, but boy was I wrong. This was, quite possibly, the most painful thing I've ever had done. More painful than transplant, more painful than drug free natural childbirth. Just hella painful.
The surgery itself was apparently a success, but I've been suffering in one way or another every since. It took 8 days after the surgery to have a bowel movement, and I've been experiencing some pretty significant edema and high blood pressures as well. It was originally a one-night stay in the hospital, but I was in a significant amount of pain and having difficulties with vomiting from the dilaudid they were giving me, so they gave me a pain pump again like after the transplant and I ended up staying another night, checking out on Christmas Eve.
|It took me a 1/2 hour to eat the corners off this cracker before I got sick again. Food was not my friend at this time.|
|This was my legs and feet covered in hives.|
|....and my hand|
So now, the 2 problems we have left to work on are my high blood pressure that the proteinuria. For the blood pressure, we switched blood pressure medications while I was in the hospital last week due to my potassium being too high (I was on Losartan), but a side effect of that new medicine (alpidoline) is swelling around the ankles. Awesome. That medicine hasn't been working nearly well enough so we also added another one (labetalol) this past Wednesday. It works really well, dropping my bp by 20 points within 1/2 hour, but I'm only taking it twice a day right now and at a low dose. The first day I thought it was working, but yesterday and today's bp readings don't look as good. It could be because I'm retaining a lot of fluid right now, but I'm honestly not sure why.
Yesterday was the first time that I actually seriously measured what I was drinking. I took an old milk jug and marked off 1, 2 and 3 liters respectively with the goal of me drinking 3 liters a day. I don't know how many of you have actually tried to drink 3 liters, but that's a HELL of a lot of water. I felt like I was floating yesterday, and I wasting urinating out nearly enough water, so I continued to swell as the night went on, gaining nearly 3 kilos yesterday. Miserable is really the only word to describe it. But overnight, I got up 4 times to urinate, and woke up this morning to a more normal weight. It's like the kidney couldn't keep up with all of the water I was intaking. We'll see how today goes. I could take a Lasix and get some of this fluid off, but I also want to see if this is something that's going to resolve itself.
I tell you, living this post-transplant life is scary and exhausting. I'm sure most people think I'm a hypochondriac at this point, but screw that. No one knows their body better than a person with a diseased body, and I know that something is still not quite right. I feel fragile, like I'm always waiting for the other shoe to drop because it inevitably will. It's a frustrating and lonely existence, but one that I can't really share with anyone because they all want to be hopeful, while I want to be realistic, and those things usually collide when it comes to chronic disease (in my experience, anyway). My next appointment is Monday where I'll see my doctor again and do another plasmapheresis treatment (no FFP this time). We'll also do another urine sample to see what my protein looks like, as the last lab showed 6530mg/g of protein leakage. That's the highest it's been since transplant.