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Author Topic: New here, hello and advice please  (Read 3919 times)
robertscz
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« on: September 09, 2017, 11:00:33 AM »

Hey there, my name is Bob I have been browsing for a bit and finally decided I would get a little more involved.. I was rushed to the er back in June out of nowhere and diagnosed with kidney failure... Hit me like a ton of bricks, otherwise healthy, 34yr old, former college power lifter, still work out 5x per week.  I am currently on dialysis 3x week, currently getting tested at Tampa for a transplant.

 Have 2 donor matches, my fiance Allison who is 27 and my coworker Carrie who is 45.  I just went for my echo and abdominal scan yesterday, assuming those are OK those are the only 2 tests I will need.. Once approved, the donors can start they're testing and hoping everything goes OK surgion said we can be transplanted in 6-8 weeks.. Fingers crossed. 

 Having a hard time dealing with all of this as I assume most of you do, are there any tips you have for me?
 Anyone gotten a transplant done by Tampa?
Anyone my age that can be a "mentor" type to me?

Hopefully sooner rather than later I will be posting in the transplant section of this forum. It's all very scary to me and I don't know how to deal with it. 
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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: September 09, 2017, 11:16:59 AM »

Welcome to the site Bob

   :welcomesign;


Wishing you all the luck in the world with your transplant, 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
LoneHighway
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OTR Trucker, Off-Grid in New Mexico

« Reply #2 on: September 09, 2017, 11:47:25 AM »

You can get deeply detailed stats on any and all transplant centers at this link:

https://www.srtr.org/transplant-centers/?recipientType=adult&organ=kidney

Find your center and click on View summary or View full report(PDF) or both!

And welcome to the site.
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OldKritter
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« Reply #3 on: September 10, 2017, 05:50:50 AM »

welcome to the group
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iolaire
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« Reply #4 on: September 10, 2017, 05:51:14 AM »

Hey there, my name is Bob I have been browsing for a bit and finally decided I would get a little more involved.. I was rushed to the er back in June out of nowhere and diagnosed with kidney failure... Hit me like a ton of bricks, otherwise healthy, 34yr old, former college power lifter, still work out 5x per week.  I am currently on dialysis 3x week, currently getting tested at Tampa for a transplant.

Welcome, I believe it helps a ton to start out "healthy" beyond the kidney problems.  It has to be easier on the body to be dealing with just dialysis (or transplant) rather than a laundry list of major medical issues.

Regardless of the transplant or not, educate yourself on the miracle of dialysis. The more knowledgeable you can be about your care and insure your treatment is good for you the better (same goes with the transplant).  Hopefully you can also build your confidence with knowledge and minimize the scare.

Good luck this week with the hurricane.
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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.
Charlie B53
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« Reply #5 on: September 10, 2017, 07:43:29 AM »


Hi Bob,  and Welcome to our IHD Family.

I seriously Pray one of your Donors are able to provide you a kidney.  Transplant is the ultimate treatment, just be very careful to always follow your transplant teams advise to ensure the kidney lasts as long as possible.
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smartcookie
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« Reply #6 on: September 12, 2017, 08:08:50 AM »

Hi, Bob!   :welcomesign;  We have a few members your age here!  I am not on dialysis, but am a renal social worker.  I am 31.  I know Riki has been on dialysis for a while and is in her 30's.  I know there are more, I am just blanking right now... lol!  Keep posting and you will find lots of mentors and people your age.  I hope the transplant works out for you!
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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.
dialysisuser82
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« Reply #7 on: October 15, 2017, 04:12:26 AM »


  Okay, your kidneys failed. 

  There is a price for every option, be it Transplant, Hemo, PD etc...  Get ready on a new career - to educate whatever you choose, and

  read your body reaction, always inform your Physicians, and make sure the problem is to be resolved or some other solutions.  You will be fine: discipline!





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Charlie B53
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« Reply #8 on: October 15, 2017, 05:10:15 AM »


You have handled your kidney failure quite well.  Now you will need to learn to live a slightly 'altered' lifestyle, reducing the workload on kidneys through an improved diet.  As a weight lifter you are already familiar with a good diet and making healtlhy food choices. Now you will need to learn how to further improve those choices so to reduce the work placed on your 'new' kidney' thus helping to extend the time that new kidney lasts.

You also need to figure out what went wrong, why your kidneys failed.  You want to make every effort to ensure your new kidney does not succomb to the same problems.

Praying that all works out well for you.  Dialysis is not for the weak.












Sp mod Cas
« Last Edit: October 17, 2017, 04:26:25 AM by cassandra » Logged
robertscz
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« Reply #9 on: October 15, 2017, 03:58:32 PM »

They did a biopsy and determined it to b fsgs caused by high blood pressure over time... My numbers from labs have been spot on, I never changed much from a diet standpoint I basically eat just about anything I want and take my pills along with the food...  My donor is going In for final testing Nov 6 so fingers crossed everything should b good and I will b as close to being back to myself soon thereafter
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Jean
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« Reply #10 on: October 15, 2017, 11:35:54 PM »

Hi BoB

You can call me Gramma Jean as My grandson is only 9 years younger than you are. I am not on Dialysis and have been in stage 4 for 10 years ( I love bragging about that) But I know what I am facing, so, I can wait. You on the other hand have to educate yourself. Just because you get a transplant doesnt mean you can go hog wild in the dietary section. I dont know what your diet will be like, but you will probably be introduced to a dietician who will be a " meanie". I am joking, they are not meanies but may tell you things you never wanted to hear. Dont worry about friends and mentors here, they will come out of the woodwork and you will get lots of advice. Best of all possible good luck to you and let us hear from you.












Sp mod Cas
« Last Edit: October 17, 2017, 04:30:33 AM by cassandra » Logged

One day at a time, thats all I can do.
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