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Author Topic: Hello, I am a kidney transplant recipient  (Read 4259 times)
tcoolbroth
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« on: April 02, 2014, 05:28:47 AM »

First of all, allow me to introduce myself and give you a little background info about my family.  My name is Traci and I am a 34 year old female in Rockland, Maine.  Kidney problems seem to run in my family.  My Nana (mother's mom) was overweight, had diabetes, heart problems, and eventually her kidneys shut down.  I do not know if it was because of a specific kidney disease or not - although I am sure the fact that she loved sweets and was diabetic did not help any.  My Nana had quadruple bypass surgery done (4 heart attacks) and died - she was still on dialysis.  She was 81 I think.  I believe she was a real trooper and hung on as long as she could.  I think I have her willpower.  She passed her problems down to the rest of us.  My Uncle Ronnie had a cancerous tumor removed from one of his kidneys several years ago and - yes - he is overweight.  My mother is overweight, diabetic, and up until recently showed some signs of kidney damage but is now doing ok.  My brother had a history of kidney stones.  Wow - this just keeps getting better.

I had a biopsy done on my left kidney in Feb 1998 and the results showed that I have a kidney disease called IG Nephropathy.  On Aug 8, 2006 I was hospitalized and diagnosed with End-Stage Renal Disease.  I was in the ICU for 3-4 days as they could not get my BP down.  For months I had been suffering from severe headaches only on the left side of my head and did not know what caused them.  After I was diagnosed with the disease in 1998, my nephrologist just told me that he would prescribe me Metoprolol (for high BP) and said that THIS particular medicine will help minimize the amount of protein in my urine.  That was all that was said to me.  I was never even told that I had high BP at first.  My PCP took me off of the Metoprolol, saying I did not need it as my BP is fine, in early 2006.  I must of started getting the headaches about March - shortly after stopping.  I was told in the hospital this: "Your kidneys have shut down. When someone has kidney problems they get high Blood Pressure.  If BP is not treated then high BP will eventually lead to head pain.  You normally get this pain only on one side of the head."  I was yelled at for stopping my BP medicine when I told them over and over the Doctor who did this!  Anyway - about 13 hours after any and all head discomfort went away I requested to be put in my own room.  The attending nurse said my BP was still very high.  I asked how much it was: 221/136.  These numbers have been implanted in my head since then.  I keep asking "If my BP was that high THEN after hours of feeling better, then I can only imagine how high it was when I was getting those severe headaches."  I am so lucky to be alive.

I had my fistula surgery on Aug 31, 2006 and was on Dialysis for a little over 3 years.  On Dec 22, 2009 I received a successful kidney transplant from an anonymous deceased donor and it is still functioning great.  No protein in my urine and my creatine is 1.1.  But I suffer from so many other problems.............Honestly, I have wished that I was still on dialysis from about 2 weeks after I had the surgery.  I felt so much better - mentally and physically - while I was on dialysis.  Sorry guys, I am just giving my honest opinion.  No one has to agree with me.
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SooMK
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« Reply #1 on: April 02, 2014, 06:32:17 AM »

Welcome! I think you will find that there are IHDers who agree with you about life after transplant being worse than dialysis as well as the other way around. But this is a wonderful place to talk about these types of things and a safe place to express your opinion. It is also very helpful for others. You have been through so much and are so young. There's time for things to get better. Glad you are here.
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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.
obsidianom
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« Reply #2 on: April 02, 2014, 01:35:40 PM »

First of all, allow me to introduce myself and give you a little background info about my family.  My name is Traci and I am a 34 year old female in Rockland, Maine.  Kidney problems seem to run in my family.  My Nana (mother's mom) was overweight, had diabetes, heart problems, and eventually her kidneys shut down.  I do not know if it was because of a specific kidney disease or not - although I am sure the fact that she loved sweets and was diabetic did not help any.  My Nana had quadruple bypass surgery done (4 heart attacks) and died - she was still on dialysis.  She was 81 I think.  I believe she was a real trooper and hung on as long as she could.  I think I have her willpower.  She passed her problems down to the rest of us.  My Uncle Ronnie had a cancerous tumor removed from one of his kidneys several years ago and - yes - he is overweight.  My mother is overweight, diabetic, and up until recently showed some signs of kidney damage but is now doing ok.  My brother had a history of kidney stones.  Wow - this just keeps getting better.

I had a biopsy done on my left kidney in Feb 1998 and the results showed that I have a kidney disease called IG Nephropathy.  On Aug 8, 2006 I was hospitalized and diagnosed with End-Stage Renal Disease.  I was in the ICU for 3-4 days as they could not get my BP down.  For months I had been suffering from severe headaches only on the left side of my head and did not know what caused them.  After I was diagnosed with the disease in 1998, my nephrologist just told me that he would prescribe me Metoprolol (for high BP) and said that THIS particular medicine will help minimize the amount of protein in my urine.  That was all that was said to me.  I was never even told that I had high BP at first.  My PCP took me off of the Metoprolol, saying I did not need it as my BP is fine, in early 2006.  I must of started getting the headaches about March - shortly after stopping.  I was told in the hospital this: "Your kidneys have shut down. When someone has kidney problems they get high Blood Pressure.  If BP is not treated then high BP will eventually lead to head pain.  You normally get this pain only on one side of the head."  I was yelled at for stopping my BP medicine when I told them over and over the Doctor who did this!  Anyway - about 13 hours after any and all head discomfort went away I requested to be put in my own room.  The attending nurse said my BP was still very high.  I asked how much it was: 221/136.  These numbers have been implanted in my head since then.  I keep asking "If my BP was that high THEN after hours of feeling better, then I can only imagine how high it was when I was getting those severe headaches."  I am so lucky to be alive.

I had my fistula surgery on Aug 31, 2006 and was on Dialysis for a little over 3 years.  On Dec 22, 2009 I received a successful kidney transplant from an anonymous deceased donor and it is still functioning great.  No protein in my urine and my creatine is 1.1.  But I suffer from so many other problems.............Honestly, I have wished that I was still on dialysis from about 2 weeks after I had the surgery.  I felt so much better - mentally and physically - while I was on dialysis.  Sorry guys, I am just giving my honest opinion.  No one has to agree with me.
Welcome and THANK YOU for your honesty. I am sorry you had to feel you had to apologize for preferring dialysis. That is an issue I have brought up as that attitude is wrong . Dialysis works WELL for some people like you and my wife . We didnt choose a transplant for that reason. We are comfortable with our decision.
Transplants are not a panacea. THEY WORK WELL FOR SOME , BUT NOT EVERYONE.  I do hope you can work out your problems with it.
Bye the way I know a lot of nephrologists in your area, if you want to send me a private message with the name of yours , i would be interested. Also you can send me mor info on what is going on with you , Maybe I can help.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Zach
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"Still crazy after all these years."

« Reply #3 on: April 02, 2014, 01:57:50 PM »

Hi tcoolbroth,

It's great to have you join our community!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
shayron1982
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1 Corinthians 13

« Reply #4 on: April 02, 2014, 02:42:00 PM »

 :beer1; Welcome T. I am 32 myself & it is always nice to speak to someone in my age range to get their expirience and viewpoint, i definately think expirience in the same situation can vary based on age. I am so glad you are here!!! Do you have any children? Just curious about your life? Please do not apologize for loving dialysis, I do too. Lots of aspects of it are very scary & can be frustrating, but all in all it is great & a wonderful blessing to so many. Hoping to talk to you soon.
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~Sharon~
Diagnosed with FSGS 2003
AV Fistula upper right arm 2007
On transplant list @ MUSC 2008
PD Cath placed 2013
Started PD at home 2014
MooseMom
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« Reply #5 on: April 02, 2014, 02:45:58 PM »

Welcome!  I'm glad you found us.  Feel free to post more about your frustration with transplantation.  I'd like to hear more about the nature of your problems.  Are you experiencing side effects from the meds?

When you were on dialysis, were you in-center?  PD perhaps?

Thanks for joining IHD!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Bambino_Bear
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WWW
« Reply #6 on: April 03, 2014, 02:33:12 AM »

 :welcomesign;
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
Darthvadar
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« Reply #7 on: April 03, 2014, 02:37:46 AM »

Hello, and  :welcomesign; to IHD....

Visit and post often... We're a friendly bunch....

Darth, Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
A.everett81
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« Reply #8 on: April 03, 2014, 07:59:28 PM »

No need to apologize at all. Ive leaned over the last year that everyone has a different opinion about dialysis. Some people (like me) absolutely hate it, while others have a more positive opinion. Dont get me wrong, Im thankful every day for the treatment that keeps me going. I just hate it lol.
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talker
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Talkers oil painting

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« Reply #9 on: April 06, 2014, 06:07:45 AM »

Hello tcoolbroth       
 :welcomesign;

Ah. the brighter side of you're story ' I am so lucky to be alive"  :bandance;.

talker
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
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