Little Tidbits
Yesterday afternoon I had my monthly dialysis visit at Davita UTSW. My mom went along with me so I'd have company in mid-afternoon traffic, and - BONUS! - we stopped for a delicious (and healthy) dinner afterwards. Yum!
I was excited for this visit because it was the first time I'd been able to see my doctor and ask him questions about the transplant process. There are still so many unanswered questions, but I was able to ask him some things and get a little bit of clarity.
I thought I'd share some of what I learned here. I've discovered over the years that this blog not only helps me communicate updates easily, but it also allows me to chronicle developments in my journey. Rereading entries helps me piece together "muddy" moments in my memory and fill in plot holes in the story.
So, here goes...
Q: I had been doing some reading online, reading a lot of articles on good-ol-Google MD. The articles sufficiently freaked me out by stating that the average lifespan of patients on dialysis is 5 years. I "celebrated" my 5-year dialysis anniversary in February of 2017. Also, some studies had said that patients who had been on dialysis for 5+ years experienced a lower rate of transplant success. Realizing that I was now on the other side of the average, I asked my doctor if he saw any "red flags" that would increase my risks or lower my odds of successful transplant.
A: No. None. The average wait for a kidney is 4 years, so most patients have to wait on dialysis for at least 4 years. Therefore, my dialysis time is pretty average.
Whew!
Q: How long does the transplant evaluation process usually take?
A: About 6 months of testing from the time of application to being placed on the list.
This is quite a bit longer than I had originally thought. It actually helped me realize that this is a marathon, not a sprint, and I need to "cool my jets" a bit.
Q: How long is the recovery after surgery and transplant?
A: About 3 months with no complications.
Q: Is that 3 months without working or anything? Or is that until I'd be back to 100%?
A: No, that's 3 months until you're pretty much back to normal.
Thank goodness, I have 55 sub days stashed away, plus leave pool and disability insurance.
Q: What's the maximum allowable BMI?
A: 35, but the closer you can be to 30, the better. But they'll help you with that.
I calculated my current BMI and target BMI and realized that I'm only 20 pounds away from meeting the requirement!
I also learned some other things while I was there:
I was excited for this visit because it was the first time I'd been able to see my doctor and ask him questions about the transplant process. There are still so many unanswered questions, but I was able to ask him some things and get a little bit of clarity.
I thought I'd share some of what I learned here. I've discovered over the years that this blog not only helps me communicate updates easily, but it also allows me to chronicle developments in my journey. Rereading entries helps me piece together "muddy" moments in my memory and fill in plot holes in the story.
So, here goes...
Q: I had been doing some reading online, reading a lot of articles on good-ol-Google MD. The articles sufficiently freaked me out by stating that the average lifespan of patients on dialysis is 5 years. I "celebrated" my 5-year dialysis anniversary in February of 2017. Also, some studies had said that patients who had been on dialysis for 5+ years experienced a lower rate of transplant success. Realizing that I was now on the other side of the average, I asked my doctor if he saw any "red flags" that would increase my risks or lower my odds of successful transplant.
A: No. None. The average wait for a kidney is 4 years, so most patients have to wait on dialysis for at least 4 years. Therefore, my dialysis time is pretty average.
Whew!
Q: How long does the transplant evaluation process usually take?
A: About 6 months of testing from the time of application to being placed on the list.
This is quite a bit longer than I had originally thought. It actually helped me realize that this is a marathon, not a sprint, and I need to "cool my jets" a bit.
Q: How long is the recovery after surgery and transplant?
A: About 3 months with no complications.
Q: Is that 3 months without working or anything? Or is that until I'd be back to 100%?
A: No, that's 3 months until you're pretty much back to normal.
Thank goodness, I have 55 sub days stashed away, plus leave pool and disability insurance.
Q: What's the maximum allowable BMI?
A: 35, but the closer you can be to 30, the better. But they'll help you with that.
I calculated my current BMI and target BMI and realized that I'm only 20 pounds away from meeting the requirement!
I also learned some other things while I was there:
- I've been feeling some guilt about not getting the weight off so I could qualify for transplant even earlier. I kept asking myself if I should have applied for this a few years ago. Not that it makes a difference now, but I was feeling guilty. However, I learned that this is a new program for transplant candidates like me. It's a partnership between the transplant team and the endocrinology department. Since I have hypothyroidism, life-long use of steroids for the Wegener's granulomatosis, and the calories from nightly peritoneal dialysis, they have experts who will help me create an individualized plan to lose the 20 pounds needed for transplant.
- The transplant testing process is the most intense "physical" someone could probably ever get. I'm not sure which tests will be required, but there will be many of them, checking every major body system to ensure my body is capable of receiving transplant.
- My doctor is amazing. I mean, I already knew that, but seriously. He talked to the transplant team about me, and then he personally filed the paperwork to begin my evaluation. He didn't ask a nurse or receptionist to do it. He took care of it all. Himself. I'm so incredibly moved and grateful for him, his care, and his help. He's a man of few words, but he cares deeply and will fight for his patients.
- Previously, patients were listed on the transplant list by the date they were approved to be listed. A few years ago, though, they changed that, so now the date used on the list is the first date of dialysis. So, let's do the math here... I started dialysis in Feb. of 2012. It's March/April of 2017. Let's say the testing process takes 6 months, and everything goes swimmingly (I'm a Pollyanna, remember?), so that puts my official listing somewhere in September/October of 2017. At that point, I will have been on dialysis for 5 1/2 years. If the average wait is 4 years, that means that it'll be quick. REALLY quick. In other words, once I'm officially listed, I'll go straight to the top of the list, and I could get a transplant quickly. So... again... Pollyanna here.... that means that it's entirely possible for me to have a new, working kidney before Christmas of 2017. Whaaaaat??????
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