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Dialysis: Transplant Discussion
I dodged a big bullet
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Topic: I dodged a big bullet (Read 3420 times)
deckerj
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I dodged a big bullet
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on:
December 08, 2017, 09:50:50 PM »
Hi guys, I've been lurking here for quite a while because I've been being told for the past 4.5 years that I will need to begin dialysis within the next year, and have long been contemplating what kind of dialysis I would opt for, and just reading about what different people thought about different things. Meanwhile, I was doing everything very well the entire time, with my nephrologist always commenting that I'm doing the best a person can possibly do. This mainly came because we were having an extremely difficult time controlling my hypertension meds. I was literally on the maximum dose of 5 different classes of medication, and it was still hard to control. I ended up figuring out that I had to take two or three of them at a time, and when the blood pressure crept back up, I'd have to rotate to another set. Over and over and over again, typically rotating every 2-4 weeks, and even then it was still hard to control.
I did all of this on my own, he just gave me the medication, and I kept him updated with how and when I would change my own dose. When my labs came in, I read them on my own directly and made my own interpretations, including adjusting my diet if I started to see anything go outside of the reference ranges. All in all, I was able to maintain a relatively stable eGFR of 17, and a creatinine clearance between 30 and 35 for those entire four and a half years.
On Friday, December 1st 2017 at approximately 5:55PM Arizona time, I received a call from Banner University Medical Center, telling me that they had a kidney that seemed to have a really high rating in terms of functionality, and they wanted me to come down to the hospital that night. I went straight there from work. 7:30AM the next day, I was put down for four hours. When I woke up, the first thing I saw were two nurses in front of me, seemingly shocked at how well the new kidney was already working. Not only did it start almost immediately, but it was pushing out a LOT of urine. In other words, it was already hard at work cleaning me out. I guess what the nurses thought was even more impressive in all of this (and I didn't think it was unusual) was that I had been listed for this long and never went on dialysis. Before transplant, my creatinine was 4.3; 2 days post transplant it is now 1.5.
Anyways, here I am a week later, and I already feel like I'm 25 again (I'm currently 35) which was when I was first diagnosed with the very early stage of IgA nephropathy (basically no symptoms at all, at the time.) This feels like such a new beginning. I remember when I first found out that I needed a transplant, I felt a huge sense of doom. But it feels like it's all over now, like a big giant long nightmare come true has finally ended.
I wish, so very badly like you can't even imagine, that I could do for you guys what the person who died did for me. The anguish of suffering with kidney disease alone is terrible, and nobody should have to go through that. Nobody. Ever. And I can't even imagine what it must be like to be on dialysis, which was something I was constantly in fear of for all four of those years. I'm not normally an emotional guy at all, but it tears me up just knowing that there are millions of other people still living like I was just over a week ago.
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iolaire
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Re: I dodged a big bullet
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Reply #1 on:
December 08, 2017, 10:06:46 PM »
Congratulations.
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Transplant
July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.
Well on dialysis I traveled a lot and posted about international trips in the
Dialysis: Traveling Tips and Stories
section.
cassandra
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When all else fails run in circles, shout loudly
Re: I dodged a big bullet
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Reply #2 on:
December 09, 2017, 01:07:57 AM »
Great news Deckerj
Enjoy an extra drink on me
Lots of love, more luck and strength, Cas
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I started out with nothing and I still have most of it left
1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96
still on waitinglist, still ok I think
kickingandscreaming
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Re: I dodged a big bullet
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Reply #3 on:
December 09, 2017, 04:31:45 AM »
That's terrific You're very fortunate.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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Re: I dodged a big bullet
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Reply #4 on:
December 09, 2017, 04:42:58 AM »
Consider yourself Blessed with another kidney.
I love it when I hear how a patient has managed to avoid going on Dialysis. I hope to hear of many many long years of continued well functioning.
Now that you have it, take care of it. Stay with a responsible diet, moderate exercise and general good clean living.
Take Care,
Charlie B53
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tigtink
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Re: I dodged a big bullet
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Reply #5 on:
December 09, 2017, 09:41:48 AM »
Congratulations! It's great to hear things finally worked out for you. And you deserve so much credit for staying off dialysis and keeping yourself active on the transplant list for so long. I know how hard and frustrating it is to wait that long, always wondering if dialysis is right around the corner and never knowing when the call might come. Next month I will have 4 years accrued time and I'm not on dialysis, but it has been a long road. It helps so much to hear your story. It gives me much hope. I love hearing you came through the surgery well and are feeling better than before the transplant. Take good care of your new kidney and enjoy your new life!
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SooMK
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Re: I dodged a big bullet
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Reply #6 on:
December 09, 2017, 06:22:06 PM »
What a great story. I'm so impressed with your handling of CKD and how you took control. Congratulations and may you have your new kidney a long, long time.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
smartcookie
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LMSW
Re: I dodged a big bullet
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Reply #7 on:
December 11, 2017, 09:03:03 AM »
Congrats!! What an amazing story! I hope you and your kidney have a long healthy life together!
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I am a renal social worker. I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
Paul
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That's another fine TARDIS you got me into Stanley
Re: I dodged a big bullet
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Reply #8 on:
December 11, 2017, 11:19:25 AM »
Well done, and good luck.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
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