Emotion where you never expect it

Last Wednesday morning, an email popped up in my gmail account, with the one word title, “Lab.”

My PCP (primary care provider) is Dr. Fung at Austin Diagnostic Clinic, and he works with my nephrologist, Dr. Adrogue, who is the chief nephrologist at UTMB, to help me get my labs done in Austin so I don’t have to drive to Galveston every three months.  Every three months I get a battery of tests, where they take 6-7 vials of blood from me, and then via a notification email and secure web site, I can retrieve the results of my tests.   Every time I get blood drawn, an internal clock begins to tick, and I can hear the ticks get louder and louder as I wait to find out the results, which usually come back in 2-3 days.

For a kidney patient, there is one number we want to know (we should pay attention to more), and that’s our serum creatinine level, which is the easiest measure of kidney function.   Mine had always been higher than the average bear, even before MPGN-1 destroyed my native kidneys, something like 1.1 when it should have been 0.5-0.8.   When I would get sick, a childhood infection had left some damage, and my level would spike to 1.7 or even 2, but then quickly drop back down.  After my appendicitis, it was over 2, which triggered more tests.  The next time, it was over 3.  Then over 4.  And then a biopsy revealed that I had an auto-immune disorder, called MPGN-1, which had destroyed 2/3rds of my kidney function and would claim all but 5% of my kidney function within 3 months.  I don’t even know how high my numbers were at the end.

After my transplant, my numbers were 1.7 – not normal, but very livable.  The level bumped up to 1.8 within a week of my transplant, which sent every one into a tizzy, and resulted in another biopsy, which was honestly one of the worst medical experiences of my life thanks to having an intern doing his first ever biopsy holding a 12 inch needle in his shaking hands as his eyes kept glancing at the attending to make sure he was in the right place.   The level came down to 1.7, and then over the years, it has slowly dropped, to 1.6, then 1.5, then 1.4, then 1.3, meaning my transplanted kidney is getting better and better.

So even though every sign of my health points to things going incredibly well, there’s always that fear that I will see a higher number.  It’s going to happen one day, it’s just a matter of time.  It might be three months from now, it might be 30 years.   And a higher number will mean that my transplanted kidney is rejecting, or failing.

I looked at the subject of the email again. I took a deep breath, clicked on the email, clicked on the results, and skipped all others until I saw the following:

Creatinine,Serum          1.27 mg/dL                  0.50-1.40

Once again, the numbers are equal to or better than the last level.   Being tired always makes me more emotional, and I am certainly a little worn out from the last couple of weeks of workouts, but I instantly choked up.  I was struck by the image of my cousin Diane, in her hospital gown, the morning of the transplant, right before we went our separate ways into pre-op.  I was still stunned that anyone would do this for me.  I could never find the right words and I never will.   I will always feel powerless to truly repay this gift.

I am stunned that it seems I keep getting better and better.  The fact that I am even able to attempt what I want to attempt this year, the fact that people have gotten used to me taking on things that “healthy” people won’t attempt, the fact that I seem to have no limit as to what I’m now capable of, rushes over me and makes me light headed when I try to really understand it.

Sometimes, it’s nice to be just a number.

3 thoughts on “Emotion where you never expect it

  1. I love reading your post and while we all have our challenges, I’m glad you have overcome a lot of yours and our paths crossed.

  2. I just wanted to leave a quick thank you note. I stumbled across your blog on a random google search of peritoneal dialysis and since reading that post, I’ve read a quite a few other ones. I’m 25, just had my PD catheter placed a week ago and reading through your posts has well really given me hope. I mean you hear what everyone tells you but reading from your experience was different. It made me see that there still is life after kidney failure. Thank you for writing your experience. It’s lifted something from my shoulders.

    • Braden (my 22 year old nephew is named Braden, so great name!),

      Glad it helped – there’s definitely still life. It’s harder than “normal” life if there is such a thing, but don’t let it stop you from pursuing the best life possible.



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