First I wanted to give an update on the transplant application process. Nothing much has happened in the past few weeks. I did mail my initial paperwork in a few weeks ago, but I have not heard back from anyone. However the letter I received back then did say they would contact me after insurance approval was received, so I’m guessing we’re still waiting on that. I’ve applied for Medicare (which I’m eligible for with all this), so I’m sure there’s some waiting involved with that. Medicare and my personal insurance will be splitting all my costs. Once all the red tape/approvals get done, then all the action will start, I’ll post more on that when the time comes. When? I have no idea.
In the meantime, I do know that it takes a long time for a transplant to happen. Most likely a year or two, or longer. So that means I need to situate myself to be the most comfortable I can be with my ongoing dialysis treatment.
My current method of treatment is hemodialysis. I’ve explained that in detail in the past, so I won’t go any further with that in this article. (If you’re new to my blog, just go back to previous entries, it explains it all).
Another method of dialysis is called “Peritoneal Dialysis“, or PD for short. This method doesn’t involve needles or blood leaving your body at all. It actually uses your own body to simulate having a 3rd kidney. What??? Well, here’s how it works:
Most of your internal organs are contained in a “sack” of sorts, in your abdomen. Imagine a big grocery bag filled with your organs (haha.. ok.. don’t imagine that… it sounds pretty gross). But really, that’s what it is. It holds all your organs together in your abdomen, keeps them secure, and protects them.
With PD, a catheter is inserted through your skin, and through this “sack”, (called the peritoneum), with the tip of the tube inside of you. Think of it as a straw. Using special equipment, you “fill” your sack with cleaning fluid. This fluid is called dialysite. This is a specialized fluid designed to attract waste products from your blood and into the fluid.
Blood flows through millions of vessels surrounding your peritoneum sack. When the sack is full of this dialysite fluid, the fluid is in contact with the vessels, and it pulls out waste products.
After about 6-8 hours or so, it’s time to “drain” the dirty fluid and add new. This process is called an Exchange.
So in theory, your peritoneum is always full of this fluid – 24/7. You have to change the fluid out 4x per day. Every day. 7 days per week.
That seems like a pretty daunting task huh? Having to dedicate your life to doing this fluid switch 4 times per day, every day. (each exchange takes about 30 minutes). The other option for me is my current setup – hemodialysis, which takes 5 hours (3x per week).
So it’s a give and take. With hemodialysis, 4 days out of the week I’m free to do whatever I want. With peritoneal dialysis, It’s a 7 day per week job – 4x per day. There are gives and takes to both. A big positive with peritoneal dialysis is that I can do it all myself. I’m in control of my own schedule. The exchanges can be done anywhere. (Home, car, work, hotel, etc). Plus, since you are being cleansed 24/7, dietary and liquid restrictions are lifted. I don’t have to worry about phosphorous, potassium, and many other things I have to watch right now.
I do understand that it’s a huge commitment – but honestly I have no choice in the matter. The rest of my life is a commitment to fighting kidney disease, and staying alive as comfortably as I can. I like the idea of being on my own schedule, the freedom to do treatments from anywhere, and no needle sticks or blood leaving my body.
The first step is to have the catheter installed. That involves surgery. I have an appointment with a surgeon on Monday Sept 14. We’ll probably schedule a surgery date after that, unless more tests are needed. However my nephrologist says I am a perfect candidate for this and I’d be really good at it.
After surgery, I need a few weeks to heal, and get used to having a plastic tube sticking out of my belly. I’ll be taking classes on how to keep it sterile – as infection is the biggest concern. However if care is used, it’s very safe. It’s rare to see an infection on these devices but it does happen – so I’ll be learning how to avoid that.
After a few weeks of healing I’ll be starting my PD sessions at a clinic. For 3 weeks I’ll go into the clinic to perform my fluid exchanges. I’ll be learning the process, how to be sterile, the ins and outs of all of it.
After 3 weeks of this in-clinic training, I’ll be let loose to do it on my own. My goal is to have all this done and be on my own by December! I have a lot of time of work over the holidays and it would be nice to be self sufficient again by then.
One thing I was thinking was “so I’ll have this tube sticking out of my body all the time??”.. The answer is yes. However it’s not a giant tube.. your skin grows around it, so it basically becomes part of you. When not in use (i.e. in between exchanges), you basically just tape it to your body, or some people wear a support band to secure it. You can wear normal clothing, it’s not noticeable at all.
You can also take showers, go swimming, etc, you just have to be sensible with it. I doubt you’d want to go swimming in a dirty lake or a public pool – but private pools and everyday bathing is A-OK.
I think the biggest part would be settling in on a routine. I’m sure I’d do an exchange first thing each morning, then do one at lunch (either at work or home since I live so close), then one after work, then another before bedtime.
I’m very grateful that hemodialysis is making me feel so much better – however I do have options, and to me the PD route sounds like a better option. I don’t have to be at the clinic every M-W-F, and no more needle sticks or wear and tear and worries of complications from them. I’m all in for PD.