It's been awhile since I've posted anything here. The last 60 days have been a tug of war between the positive attitude I've tried to maintain and the frustrating reality of dealing with the setbacks of using a fistula and just going through the whole dialysis process.
The frustrating part of all of this reared its head back in October when my fistula stopped working. I noticed that the fistula wasn't buzzing after a Saturday dialysis session. I thought it might have been caused by the tightly wrapped gauze covering the access spots on my arm. After I removed the tape and the gauze, I waited for the fistula to spring back to life. It didn't.
It felt a little more alive on Monday, so I held out hope that by Tuesday it would be fine. It wasn't. When I asked the nurses to listen to the fistula, there was nothing there. No swish. Since my catheter had already been removed, all they could do was draw some blood and check my potassium, and then send me home.
Hats off to Luanne, my nurse that day. She contacted Dr. Frock and explained what happened, and then she went to work to get me scheduled to get my fistula repaired. I went to work as if it was a non-dialysis day, not knowing if I would be working a full day or not.
Luanne called me later in the morning to let me know my potassium was normal. That meant I could go another day without dialysis. Dr. Feldhaus was out, so he wasn't available to see me to do anything with the fistula. The next call went to Dr. Gutta, the surgeon who put in my catheter last year.
He was available and could work on my fistula at 4pm that afternoon. So, Jeannie and I did what we seem to be getting better and better at. We dropped what we were doing, put in for time off of work, and headed to Bergan for another procedure.
When we got to the hospital around 2pm, I joked with the registration person that I'm here so often that they should give me a time card! When the nurse came out to get me, it was Molly, a nurse I've had before on my other visits, so this time around it was like old home week.
Dr. Gutta came in a little bit before 4 to explain what he would do, and to prepare me for the possibility that he may have to place another catheter. I was hoping to avoid that, but I was beginning to resign myself to the fact that I was leaving there with another catheter.
Dr. Gutta did a fine job opening up the upper part of my fistula which had narrowed. The graft section that Dr. Feldhaus placed was pretty well chewed up and Gutta was able to repair that too. He had to place a catheter again, since my fistula would need a couple weeks to heal.
The fistula healed just fine, and for a couple of weeks I got to use both hands while working at dialysis! But now I'm back to being a one-armed worker during dialysis. I don't really mind. The fistula is working great, and now thanks to a little map that Gutta drew on my arm, the dialysis staff has a better idea of where to stick me. The area around the graft is still swollen, so all the poking has been done in my upper arm, but I'm back to using the medium needles like I was last month, so I should be able to make an appointment to get the catheter removed in a couple of weeks.
Here's the deal about getting that catheter removed. Dr. Gutta says all I have to do is make an appointment to come into his office and he just yanks it out. I'm sure it's a little bit smoother of a process than just yanking it out, but it's not going to be a surgical procedure. That sounds like a recipe for pain. I heard a story of someone who asked to keep their catheter as a souvenir. I hadn't thought about that before, but it sounds like a good idea now. Hopefully, he will let me keep this one.
So now, on Thanksgiving weekend, with a possible kidney donor from work, I'm trying to be positive and look forward to getting a new kidney in January. At the same time I must admit I'm feeling pretty resigned to being a dialysis patient for awhile. That isn't a particularly pleasing thought, especially after this latest drama.
After being in dialysis for a little over a year, I can say that it is a pain. Forget the fact that I can't go more than three days without dialysis, which is limiting enough, but there's the pain and frustration of going through these surgeries to repair the fistula and the recovery time associated with each occurrence.
It seems like just when I get my head around the routine, and I start to return to a normal routine of exercise and good eating, something happens to throw me off the track. This is the part of the grind that is wearing me down. I want the transplant. I need a donor. I don't know how much more plainly I can put it.
I know there's a feeling among my family that Jeannie should get tested, so we can see if she's a donor. My position on this all along has been that going this way would prevent us from being there for each other during our procedures. Since the procedures to remove and transplant the kidney would happen at the same time, we would not be there to help the other get through each surgery.
Then, there's taking care of us when we get home. We would need someone with us to help us with meals, cleaning, and the other day to day things we take for granted. We would probably need help for about a month or so. To their credit, my nieces have all offered to help us get back on our feet during the recovery time.
Finally, even if we had enough help to get the care we needed when we got home. And, we could go into this knowing that we would see each other in our room, after the transplant. Even with all of that covered, there's still an 80% likelihood that she is not going to be a match.
So, there's still a lot to get worked out. The donor question doesn't come up during family visits any longer. I don't ask, and I don't get asked. It feels like I'm at a dead end.
Yet, despite that, there's plenty to be thankful for. Even though I'm not crazy about dialysis, it's keeping me alive and able to do most of the things I want to do. My leukemia is in remission and by next September, I will be finished with the maintenance treatments.
I'm doing work I enjoy, despite working for a boss I don't enjoy. All in all, I continue to be a work in progress. Maybe in a way, we all are a work in progress. If we weren't working on getting better or just evolving, we wouldn't be living.
Happy Thanksgiving!
