written on October 1, 2014
On Tuesday, my wife and I spent the day at Cedars for our pre-op evaluation and testing. And it was the whole day – 7 am until 3:30. Yikes.
We met with the surgeons, some of the nurses, the social worker, the financial analyst (to let us know what our insurance will cover – thankfully, it looks like everything) and then had to pre-register with anesthesia and get some lab work done. The lab work is to confirm that nothing has changed between us and we’re still a match.
It was a very long day, but a very educational one. It started with a group conference where one of our nurses went through the entire surgery, starting at 5:15 am the day of. Basically we’ll check in on Tuesday morning and then get ready for the surgery. We’ll have a pre-op rundown with the nurses and surgeons about half an hour before they start the surgery, for any last-minute questions we might have. My wife goes in first, about 7:15 and her surgery will last anywhere from 3-5 hours. They have to make the five laproscopic incisions in her abdomen to put in the cameras, probes and instruments, and also pump her abdominal cavity full of CO2. Then they go in and start cutting out her kidney. Once they’re ready to disconnect and remove it, they’ll do one more incision underneath her waist line where the kidney will be removed. By the time her kidney is ready to go, I’ll have been wheeled into my own OR room, most likely right next to hers, where I’ll have been opened up and my artery and vein prepped for insertion. I start about two hours after she does and once my body is ready, they remove the kidney from her, put it on ice, wheel it over to my room and put it in me. They have to attach it to an artery, to a vein and then connect the ureter to my bladder. If everything goes well and my body doesn’t immediately attack it, the kidney should start to work within 20 to 30 minutes. To make sure my body’s immune system doesn’t immediately go on the offensive, I’ll be given some pretty high does of immunosuppresants. And for the first four weeks after the surgery I’ll continue to be on high dose meds that will eventually be tapered down.
After the surgery, then the recovery begins. Apparently we’ll both be in a good amount of pain for the first few days. Cedars expects we’ll have it under control within 24 hours. They hope to have me out of the hospital within 5 days. Of course if there are any complications or if the pain isn’t under control, I'll be staying longer.
And in addition to all of that surgery information, we had an opportunity to ask our questions. I won’t bore you with that long list, but I will say that they like the idea of me staying in a separate apartment from the kids for the first four weeks. Both the doctors and nurses believe that if I’m doing well after 4 weeks I could probably return home. I’m hopeful that’s true. I’m not supposed to go into any crowded public spaces for those first four weeks, and no showers until the catheter comes out (which might take as long as 3 weeks – they want to make sure the new kidney is working fine before they rule out additional dialysis for me).
I also asked about my concerns with the old kidneys. The transplant nephrologist does feel having the old kidneys in will have some negative effect on my blood pressure, so I’ll definitely be staying on my meds. Although he’s hopeful we’ll be able to cut it down from 6 to 2 or 3. Unfortunately, Amlodipine will still be one of them – the one that’s been causing all my fluid retention of late (I haven’t seen my ankles in almost 2 weeks now).
He also thinks that sleeping through the night won’t happen for several months. As he put it, I’m going to be peeing a lot after the surgery. He thinks my volume of urine will be crazy high, especially during the first couple of weeks as my body goes through the process of shedding all this excess fluid that has built up in the last four months. He said that even though I dialyze three times a week, my body has been storing fluids that I’m not even aware of. Hmm, how much water weight am I carrying? Maybe before the prednisone weight kicks in I’ll manage to look even better than I do now! (I doubt it, but I guess we’ll wait and see.)
The transplant nephrologist and the fellow who’s assisting in my case told me that the recurrence of IgA Nephropathy, the disease I have that started this whole thing in the first place, will most definitely occur. It doesn’t matter what kind of kidney I receive, or from whom I receive it, the nephropathy will eventually find the kidney and begin the chronic degeneration process again. Although their experience with IgA specifically has shown that the anti-rejection meds I’ll be taking will hold it in check for the rest of my life. So they’re not concerned that I’ll lose the kidney to nephropathy. At least there’s that. I had hoped the disease would not return, but now I know it will. Since they’re not concerned about it being a problem, I’m going to choose not to worry about it.
All in all it was a very productive day. It’s going to be a long road to recovery and the surgeon and nephrologist told me I will most definitely have rejection episodes in the future. They don’t know when or how many, but they will happen. And as long as I get to Cedars early enough in the episode, they should be able to take care of it without any long-term damage to the kidney.
Here’s hoping that if and when they may happen they are few and far between. It’s up to me to stay healthy and I plan on doing just that. As I mentioned in a previous post, I don’t ever want to go through any of this again. And my wife can only give me this gift once – I need to make sure I make the most of it for as long as I can.