Saturday, May 26, 2012

Nephrologist appointment

I've been struggling lately with my body chemistry issues.  It began over a year ago when my creatinine began to increase.  My baseline creatinine is about 0.7.  When it reached 1.0, it was considered a problem.  It rose and fell for several months, but has been on a steady increase more lately.  My creatinine level is checked monthly as part of the islet cell transplant trial and is the measurement used to assess kidney function.

My potassium seems to be back down to within normal limits.  I've been taking kaexolate weekly to help with this and it must be working.  I'm doing my best with the low potassium diet.  Its impossible to follow exactly and I've been erring on the side of my low carb diet.  That helps in the present.  The low fat, salt, and now potassium parts of my diet are a result of the immunosuppressants and I don't have as much control over them.  I've decided to concentrate on the battle that I can win.

I had some pre-appointmemt labs drawn about a week before my visit.  They consisted of kidney function blood and urine tests.  I got a sneak peak at the results when I received a call from Dr. G's (endo) office saying that my creatinine was up to 1.6 and that I should contact my nephrologist.  While I was in the office waiting for my appt, I also got a call from the SDI saying the same thing.  So, I was dreading hearing what she would have to say as I waited in her office.

The visit went well.  I was pleased to see that my weight was up to 107.  We went over all of my prescriptions which takes awhile.  My blood pressure was ok, about 135/85.  She asked if my ankles were still swelling.  I showed her and she didn't think they seemed to bad.  I asked her the same question that I asked Dr. G about whether I was going to reach a limit with my drugs and their effects on my kidneys.  She said she didn't see that happening any time in the near future.  That sounded promising.  Then she said that if/when that happens, I can just get a kidney transplant.  That was a real shock to me.  I said that I certainly don't want that.  I had always assumed that if things got too bad that I would just have to give up my islets.  She didn't think that would be the case.  She would rather see me get a new kidney and keep the islets healthy.  She said that IF that would happen, that it wouldn't be for awhile.  I left feeling good for the present, but concerned and confused about the future.

I thought about it for a few days, then decided to email Dr. Bellin to see what she thought about this.  She was more in line with what I had imagined.  She replied that possible options if my kidneys do get progressively worse would be to:
1. lower my dose of Tacrolimus and hope for the best
2. change from Tacrolimus to a different immunosuppressive drug.  But this usually results in loss of islets

She also said that she has seen patients who live with higher levels of creatinine without progressing to renal failure.  These options made me feel much better.  The thought of either dialysis or kidney transplant seem much too severe to consider as a possibility.  I'd rather hope that the next phase of the cure will not involve immunosuppression and that I'll still be healthy enough when that is a reality.

So, for now, summer is here and I'm going to enjoy every minute of it without worrying over all of these numbers.

Senator update
He is now alerting to both my high blood sugars and my low blood sugars.  See my other blog about him for the details.  It's been really exciting.
My training helper


et63 said...

Hey Kathy,

Sorry to hear about the renal issues you are having. I have a couple of questions for you, if you don't object. :)

I am assuming you had decent renal function prior to the islet transplant?? If so, my only concern would be about changing the antirejection drug(s) ... I know you did your research on this topic, and I am about to post an article I got this morning regarding antirejection drugs. Take it one day at a time, and I know you know better than to beat yourself up over a few things that seem out of place when you are doing everything in your power to do it all right. PS: I love the pics you have been posting of the dogs. :) Be well!!

et63 said...

Oh ... and one other question, I am wondering if the phase of "menopause" could be playing a role in the chemical changes going on??? I have been having some of the same issues and am just wondering. It is my opinion, that the hormone issue can't help but affect the other. Thanks!!

Kathy said...

Hi Eliza,
I'm always glad to answer questions about all of this. My renal function was good before the transplant. Thats one of the things that they test closely and have certain criteria for eligibility.

I really don't have any guilt feelings about this. I know that its the drugs that are driving all of these issues. And the drugs are necessary for the transplant. So in my mind they are a necessary nuisance. Hopefully research will make them unnecessary in the future. But for now, they have enabled me to enjoy this period of health and I'm hoping it will last.

Also, my wild blood sugars would have been stressing my kidneys these last almost four years as well. Theres a small amount of tradeoff, I think.

I went through menopause a few years ago. It was relatively simple for me, but who knows what changed could be taking place beneath the surface.

Camille said...

Kathy, I'm always interested in your posts. You do a great job and describing clearly without getting so bogged down as to make it hard for the layperson (who hasn't had a transplant) to understand.
Those were some pretty impressive graphics, I must say!
I hope you referred the person I mentioned to you to your blog. It's a great resource.
And your friends in MN will always be glad to see you even if it's for a vacation instead of an appt.
Maybe we can arrange for some cross-country skiing for you!

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