I Hope I Belong Here

[aduwnptg]

I'm George from Cape Cod, and I hope I can be a member of this community in spite of my not really fitting in anywhere.

It all started in 2007 when a doctor, looking at blood test results, said "Your kidneys look weak."

I started seeing a nephrologist who agreed they were weak as a result of a lifetime of high blood pressure and cholesterol goop in my arteries. The outlook was I might eventually end up on dialysis or needing a transplant, but that was a long way off. I think my GFR was around 40% at the time, "see me in 6 months," were her parting words for the next several years.

Then one day in August 2011 my GFR had slid down to 17% and my nephrologist was suddenly talking about sending me to classes to learn about ESRD options. I went to the classes and also started a kidney transplant workup at a Boston hospital. Between my GFR wandering between 13 and 22% (making me not sick enough), and the transplant surgeon wanting clearance for a round of testicular cancer I had 35 years ago (the fact that I was still alive wasn't enough), I never did finish that workup.

Finally in April this year I had a heart attack. Based on my history it wasn't much of a surprise, nor was it much of a heart attack, but things spiraled downwards as my lungs filled up with fluid, and more and more people crowded into the room. After a very long weekend in the hospital, they did a cardiac catheterization. Knowing my kidney situation, it was done by one of the best interventional cardiologists around and he assured me he'd use a minimum of dye (not good for kidneys).

To try to make an already too long story a bit shorter, by the following weekend I had a pair of tubes sticking out of my shoulder with the other ends connected to a refrigerator sized hemodialysis machine.

They fixed my heart, moved the tubes to my chest, and sent me home to lead a normal life. Of course this was the new normal of going to the local dialysis center 3 times a week for a four hour session.

The next couple months were occupied by the usual starting dialysis issues: high blood pressure, low blood pressure, couldn't walk because of swollen ankles, finding my "dry weight," feeling too tired to explain that I was tired, trying to work my full time job (I almost made it to 3 days once), trying to get back to my yoga practice because my back was a mess from sitting in one position for 4 hours, etc.

Finally I had surgery to place a PD catheter and had a fistula made in my left arm, just in case, and 2 weeks later started training for home cycler peritoneal dialysis.

I had my last hemodialysis on a Saturday and started PD training on Monday. Training went well for 2 days then just before I left on Tuesday, they drew some blood.

The next day, June 25, Christmas came 6 months early. I arrived at the center and as soon as I sat down my nephrologist came in and told me my creatinine was 2.1, GFR 35%, and I no longer need dialysis!

Now it's September, I'm still feeling fine, I've been discharged from the clinic but go back every 3 weeks to have my PD cath flushed out. I think they all thought I'd be back on dialysis by now, my nephrologist says I'm only her second patient in ten years to have this happen to.

Obviously, I feel very happy and lucky, but still there's a loss, guilt at leaving people behind hooked up to machines, and a certain knowledge that I'll be back someday and knowing what's coming it seems like it will be worse the second time around.

So I've got a PD cath, fistula, and a line from "I Ain't Got You" by the Yardbirds keeps echoing in my head...

"I'm All Dressed Up with No Place to Go"

[cassandra]

Welcome to the site aduwnptg

     


Here's hoping you stay 'clean' for an awful long time

Take care, Cas

[Jean]

Yes, you belong here!!! What a story. Hope you continue to stay disease free and ya know, even if this does last, at least you will gain some knowledge.
So     to IHD.

[cattlekid]

Wow!  What a story!

Welcome!!  There are other folks here who have also been able to get off the dialysis rollercoaster without a transplant.  Glad to see you are among them! 

[SooMK]

A wonderful story. Thanks for telling us.

[PrimeTimer]

Welcome, aduwnptg. Don't know if any of us actually belong here but you can park it here with the rest of us and maybe you'll like it. Hope you continue having a good outcome. 

[Darthvadar]

Hi George....  to IHD...

Of course you belong here... Anybody with a real interest in the renal world belongs and is welcome here!...

Hope you continue to feel well(ish) for ages....

Visit often, and keep posting....

Darth... Moderator...

[obsidianom]

Any one who remebers the Yardbirds Belongs here. I am a student of the 1960s music era. Its all we listen to in our house. The British invasion was great.
Eric Clapton started with the Yardbirds.  "For your Love" .   Welcome to the site.

[Ted]

I too am new here, and I loved reading your story, stay on bored, you belong more than you may ever know.  And congratulations, stay healthy!!!!  Ted

[kristina]

A great story!
... And a wonderful recovery...!
Good luck to you and thanks for telling us, because it shows
that with ESRF anything is possible, even a recovery!

Best wishes and good luck from Kristina.

[Michael Murphy]

Every one needs to hear a story that has a happy ending,  However you have sat in the dreaded chair been hooked to a machine and spent hours of boredom three times a week, you are and always will be a member of the brotherhood of the Big D.  You understand the life giving curse of Dialysis we all need it and we all hate it.  People get transplants and stay here You have a unique voice to add to this site someone free of the chair but knowing the experience.

[Wat76]

Wow, that was interesting, however, great news.  Enjoyed the post and loves to see great things happen.