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Carl
Member
Username: Carlbullen

Post Number: 76
Registered: 01-2012
Posted on Wednesday, June 27, 2012 - 11:57 am:   Edit Post Delete Post Print Post

Hi everyone,

I was just reading Satty's thread about IGA Nephropathy:
http://www.transplantbuddies.org/tbx/messages/7/586096.html?1340773819

And Jason mentioned he had 3 transplants. Have you Jason?!

I'd like to know more about people on here who have either had very long transplants (I am 23 years) or who go transplanted very early (10 years old for me) or have had multiple Txs like Jason.

For instance, on the "Kidney Donors and Recipients" FB group:

http://www.facebook.com/groups/8535203786/10151362133733787/?notif_t=group_comment

Michael R. Gaudet has had his for 33 years and Amando Nazario had her's at age 2!

I would love to hear of all the stories like this. People with long-ish transplants, or transplants very early, or those with multiple transplants......
Kidney Tx 1989 (aged 10)
23 years post Tx
Cyclosporin + BP tabs first 19 years; now MMF + Pred.
(but I'm not defined by the above!!)
Reader / thinker / researcher / web designer
Carl
Member
Username: Carlbullen

Post Number: 77
Registered: 01-2012
Posted on Wednesday, June 27, 2012 - 11:59 am:   Edit Post Delete Post Print Post

Maybe copy this template:

Name:

Number of transplants:

Age at first transplant:

Longest kidney transplant longevity:

(Brief) notes (primary disease, current drugs):
Kidney Tx 1989 (aged 10)
23 years post Tx
Cyclosporin + BP tabs first 19 years; now MMF + Pred.
(but I'm not defined by the above!!)
Reader / thinker / researcher / web designer
Carl
Member
Username: Carlbullen

Post Number: 78
Registered: 01-2012
Posted on Wednesday, June 27, 2012 - 12:00 pm:   Edit Post Delete Post Print Post

Name: Carl Bullen

Number of transplants: 1 (still on first)

Age at first transplant: 10

Longest kidney transplant longevity: 23 years

(Brief) notes (primary disease, current drugs): Original disease uncertain. Maybe henoch schonlein purpura. Now on Pred (yuck) + MMF
Kidney Tx 1989 (aged 10)
23 years post Tx
Cyclosporin + BP tabs first 19 years; now MMF + Pred.
(but I'm not defined by the above!!)
Reader / thinker / researcher / web designer
Satty
Member
Username: Satty

Post Number: 20
Registered: 06-2012
Posted on Wednesday, June 27, 2012 - 12:25 pm:   Edit Post Delete Post Print Post

Carl...this is a great inititaive...i hope and pray that people come forward and provide the details ...this information is going to help people like us a lot.

Hi all,

Let us all fill up the details in the format that Carl has set......my sincere request to all of you....you never know who gains some strength out of all this .

thanks
Satty
sssteph
Member
Username: Sssteph

Post Number: 14
Registered: 12-2011
Posted on Wednesday, June 27, 2012 - 06:28 pm:   Edit Post Delete Post Print Post

Name: Stephanie

Number of transplants: 1 (kidney/pancreas)

Age at first transplant: 42

Longest kidney transplant longevity: 9 1/2 months (newbie here)

(Brief) notes (primary disease, current drugs): 28 years of diabetes caused renal failure. Tacro (4.5mg- 2xday), Mycrophenalate (750mg-2xday Rapamune (1mg)
Kidney/Pancreas 9/13/11
Scripps Green Hospital, La Jolla CA

"Dream like you will live forever,
Live like you only have today"-unknown
Cora
Member
Username: Cora

Post Number: 492
Registered: 06-2007
Posted on Wednesday, June 27, 2012 - 07:25 pm:   Edit Post Delete Post Print Post

Name: Cora

Number of transplants: 2 (sort of)

Age at first transplant: 39 for kidney, 44 for pancreas

Longest kidney transplant longevity: Will be 10 years in October

(Brief) notes (primary disease, current drugs): Type 1 diabetes in 1966, on myfortic (540mg bid) and rapamune (4mg once daily)
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Kidneyboy
Member
Username: Kidneyboy

Post Number: 51
Registered: 01-2012
Posted on Wednesday, June 27, 2012 - 07:27 pm:   Edit Post Delete Post Print Post

Hi Carl,

Name: Norm
# of TX: 1
Type: cadaver
@ age: 42
Longevity: 12 + yrs.
Cause:IgA Neph. (possible strep related)
Meds:Tacro, Mycrophen, Pred
keith elliott
Member
Username: Keith_elliott

Post Number: 265
Registered: 11-2010
Posted on Thursday, June 28, 2012 - 03:03 am:   Edit Post Delete Post Print Post

Name : Keith

# Transplant : 1

Age at first : 39

Longevity : 8 years so far

Notes : Medullary cystic kidneys disease type II

Meds : Tacro, Aza, Pred
roger
Member
Username: Rojjarz

Post Number: 50
Registered: 02-2008
Posted on Thursday, June 28, 2012 - 03:21 am:   Edit Post Delete Post Print Post

Name : Rohan

# Transplant : 1

At Age : 23

Longevity : 6 years so far

Cause of kidney Failure : Proliferative glomerulonephritis

Meds : Tacrolimus , Azathioprine,Prednisolone
miocean
Member
Username: Miocean

Post Number: 201
Registered: 07-2010
Posted on Thursday, June 28, 2012 - 08:13 am:   Edit Post Delete Post Print Post

Name: miocean

Number of transplants: 1 (kidney)

Age at first transplant: 58

Kidney transplant longevity: 2 years, 4 months

Primary disease: Diffuse scleroderma (Progressive Systemic Sclerosis)

Current anti-rejection drugs: Prograf, Myfortic, Prednisone
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ
Mark
Member
Username: Moj

Post Number: 1
Registered: 01-2011
Posted on Thursday, June 28, 2012 - 08:28 am:   Edit Post Delete Post Print Post

Name: moj

Number of transplants: 1 non-living non-related

Age at first transplant: 22

Longest kidney transplant longevity: 27 yrs. (and counting)

(Brief) notes Born with single pelvic kidney, deteriorating function.

Meds: Cellcept, Prednisone
Carl
Member
Username: Carlbullen

Post Number: 79
Registered: 01-2012
Posted on Thursday, June 28, 2012 - 10:23 am:   Edit Post Delete Post Print Post

This is absolutely excellent! I find it so fascinating to see ages, lengths of transplant and drug combinations too!....

Any more?
Kidney Tx 1989 (aged 10)
23 years post Tx
Cyclosporin + BP tabs first 19 years; now MMF + Pred.
(but I'm not defined by the above!!)
Reader / thinker / researcher / web designer
Satty
Member
Username: Satty

Post Number: 23
Registered: 06-2012
Posted on Thursday, June 28, 2012 - 10:59 am:   Edit Post Delete Post Print Post

This thread is going to give me hope and will to fight......
Please people give us more such details.......
Carl...thanks again for starting it......

I am waiting......
Alim
Member
Username: Alim

Post Number: 27
Registered: 04-2012
Posted on Thursday, June 28, 2012 - 11:25 am:   Edit Post Delete Post Print Post

Number of transplants:1
Date: 12/2/2011
Age at transplant: 54
Disease: Barters/ Gittlemas syndrome
Meds: Myfortic, prednisone, Prograf, bactrium, propranolol, baby aspirin, valcyte
Alaskagal
Member
Username: Cheathers

Post Number: 120
Registered: 06-2011
Posted on Thursday, June 28, 2012 - 12:17 pm:   Edit Post Delete Post Print Post

GREAT thread!

Name: Heather

Number of transplants: 1 live donor non related (what a gift!)

Age at first transplant: 63

Longest kidney transplant longevity: 10 months!!! A newby.

Polycystic Kidney Disease (PKD) Myfortic, Prograf, occasional Bystolic BP med, on and off Acyclivir.
Kidney tx Aug. 23, 2011 Seattle Swedish Hospital.
Anne
Member
Username: Buckeye_4_life

Post Number: 226
Registered: 03-2008
Posted on Thursday, June 28, 2012 - 12:29 pm:   Edit Post Delete Post Print Post

Name: Anne

Number of transplants: 2 (first deceased donor-list) (second, living donor, son)

Age at first transplant: 37

Longest kidney transplant longevity: 11 1/2 years, now 4 with living donor kidney

(Brief) notes (primary disease, current drugs): unknown cause, believed to be a virus which effected my function and gradually (unbeknowst to me) killed my native kidneys.

Drugs: neoral, Rapamune and 2.5 pred
Anne
kidney recipient 3/11/96, deceased donor, John L.
- dialysis started 11/15/07
son Billy gave me the gift of life May 6, 2008 at The Ohio State University! Amazing!
Doubly blessed!!
Sue
Member
Username: Sue

Post Number: 27
Registered: 11-2011
Posted on Thursday, June 28, 2012 - 01:07 pm:   Edit Post Delete Post Print Post

Name: Sue

Number of Transplants: 1 Kidney

Age at first transplant: 50

Kidney transplant longevity: 2 years, 3 months (March 29, 2010)

Living Donor ~ Gift from sister Mary

Primary disease: Polycystic Kidney Disease (PKD) non-hereditary

Current anti-rejection drugs: Rapamune 1mg, Cellcept 750 mg in AM, 500 MG pm
Kidney Transplant 03/29/2010 New Hampshire
PKD~ Received the gift of life from my sister Mary
Alinds
Member
Username: Alinds

Post Number: 310
Registered: 09-2010
Posted on Thursday, June 28, 2012 - 09:43 pm:   Edit Post Delete Post Print Post

Name: Lindsay

Number of transplants: 1 (also a stem cell transplant as part of a clinical to induce tolerance and go off immunosuppression)

Age at first transplant: 45

Longest kidney transplant longevity: almost 2 years

(Brief) notes (primary disease, current drugs): Polycystic kidney disease, take no drugs at all
Baldur
Member
Username: Baldur

Post Number: 2
Registered: 07-2013
Posted on Sunday, July 07, 2013 - 08:23 am:   Edit Post Delete Post Print Post

Number of Transplants: 1

Age of first transplant: 18

Longest kidney transplant longevity: 15+ years (had it in 1997) from cadaver

Drugs: cyclosprine, cellcept, prenisone, diovan

I think diovan was particularly useful in increasing the longevity of the kidney.
Michellesb1
Member
Username: Michellesb1

Post Number: 4
Registered: 07-2013
Posted on Thursday, July 11, 2013 - 06:25 pm:   Edit Post Delete Post Print Post

Name: Michellesb1

Number of transplants: 3

Age at first transplant: 11

Longest kidney transplant longevity: 15yrs ongoing :-)

(Brief) notes (primary disease, current drugs):
Kidney Tx #2 age 13 & Kidney Tx #3 age 18
Prograf & MMF (+ loads of other stuff)
Never found out why, school doc noticed I was petite bloods done ESRF - possibly scarlet fever when younger or sun stroke injection on Hols in America?
Busy life, career, hubby, home (33yrs old)
Timmy
Member
Username: Timmy

Post Number: 1
Registered: 08-2013
Posted on Tuesday, August 27, 2013 - 03:11 pm:   Edit Post Delete Post Print Post

Name: Tim

Number of transplants: 1

Age at first transplant: 24

Longest kidney transplant longevity: 33
Ethans Mum
Member
Username: Ethans_mum

Post Number: 1
Registered: 09-2013
Posted on Saturday, September 07, 2013 - 03:10 am:   Edit Post Delete Post Print Post

Name: Ethan (I am Ethans mum, Jenny)

Number of transplants: 1 (Daddys kidney)

Age at first transplant: 2 years

Longest kidney transplant longevity: 2 years

(Brief) notes (primary disease, current dru Dysplastic kidneys (underdeveloped)- tacrolimus, mycrophenolayte- pred- labetalol.. Biopsy last month showed 25% scaring due to UTIs, interestital nephritis-cause unknown, been tested for viruses in NZ and now starting overseas testing not done in NZ...
Gary
Member
Username: Gary777

Post Number: 3
Registered: 09-2013
Posted on Tuesday, September 10, 2013 - 04:27 am:   Edit Post Delete Post Print Post

17 years in Novenmber. Had it at age 26. I recall if it wasn't for my nurse mother we would have never found out that quest diagnostics were spinning my cyclosporin levels during two different shifts and both shifts were using different procedures that would give two different cyclo levels. My doctor was adjusting my cyclosporin up and down the first few months based on two different machine results. The day shift would run it one way and the night shift another. Could have lost my kidney so make sure you newbies are asking what way cyclosporin is being run and make sure its run like that for you consistanly so doc can adjust accurately.
Gary
Member
Username: Gary777

Post Number: 4
Registered: 09-2013
Posted on Tuesday, September 10, 2013 - 04:33 am:   Edit Post Delete Post Print Post

Oh. Alports syndrome. Hereditary. Kind of rare. More doctors knowing more about these days. I was on the cadavers transplant list. Bless the family who lost their son in Boston and made the decision to save a life in Michigan (mine) in the same night. ( Organ donation)
Gary
Member
Username: Gary777

Post Number: 5
Registered: 09-2013
Posted on Tuesday, September 10, 2013 - 04:39 am:   Edit Post Delete Post Print Post

Oh. Alports syndrome. Hereditary. Kind of rare. More doctors knowing more about these days. I was on the cadavers transplant list. Bless the family who lost their son in Boston and made the decision to save a life in Michigan (mine) in the same night. ( Organ donation)
Gary
Member
Username: Gary777

Post Number: 6
Registered: 09-2013
Posted on Tuesday, September 10, 2013 - 04:39 am:   Edit Post Delete Post Print Post

17 years in Novenmber. Had it at age 26. I recall if it wasn't for my nurse mother we would have never found out that quest diagnostics were spinning my cyclosporin levels during two different shifts and both shifts were using different procedures that would give two different cyclo levels. My doctor was adjusting my cyclosporin up and down the first few months based on two different machine results. The day shift would run it one way and the night shift another. Could have lost my kidney so make sure you newbies are asking what way cyclosporin is being run and make sure its run like that for you consistanly so doc can adjust accurately.
Timmy
Member
Username: Timmy

Post Number: 3
Registered: 08-2013
Posted on Friday, September 13, 2013 - 08:04 am:   Edit Post Delete Post Print Post

[quote]I was curious as to what Meds you are taking?[/quote]

For rejection, I only take Imuran; 75mg (one, and another half, per day). Have been taking it religiously for 33 years straight.

That's what was being given back in 1980. Many doctors don't like to "mess with success"... and as newer anti-rejection meds came out - they decided to not experiment and leave me on Imuran.

For the first 2-3 years after the transplant; I was taking Prednisone heavily as well. Initially... eleven pills per day. You know that old saying about Prednisone?

"It cures everything; it also causes everything"

LOL

I got cataracts within the first 2 years of Prednisone, and begged my doctor to ween me off. At the end of the third year, I was no longer taking it.

I take blolod pressure lowering medications as well.
NK
Member
Username: Niraj_kothar

Post Number: 1
Registered: 09-2014
Posted on Wednesday, September 10, 2014 - 05:08 am:   Edit Post Delete Post Print Post

There is a new project going on which if completed would gives us all an alternate option of an artifical bionic kidney.Hope this project is sucessful and completed at the earliest.
http://pharmacy.ucsf.edu/kidney-project/
Its also nice to interact with the team there and join them on facebook too.Perhaps the best hope yet for kidney patients.
Yvonne Brennan
Member
Username: Ymh35750

Post Number: 16
Registered: 04-2007
Posted on Wednesday, September 17, 2014 - 01:42 pm:   Edit Post Delete Post Print Post

Name: Yvonne

Number of transplants: 1

Age at first transplant: 31

Longest kidney transplant longevity: 12

Focal segmental glomerulosclerosis (FSGS)here. Idiopathic of course. I've been on Prograf, Cellcept and Prednisone from the first day after transplant. My creatinin runs about 1.1 now, which is excellent!!
moxlee
Member
Username: Moxlee

Post Number: 1
Registered: 09-2014
Posted on Wednesday, September 17, 2014 - 02:34 pm:   Edit Post Delete Post Print Post

Name Eileen
Number of transplants 1
Age at transplant 19
Kidney longevity 39 years
Reason Polycystic
Drugs Prednisolone amd Imuran :-)
feral4mr2
Member
Username: Feral4mr2

Post Number: 6
Registered: 01-2009
Posted on Thursday, September 18, 2014 - 08:07 am:   Edit Post Delete Post Print Post

Name: John

Number of transplants: 1

Age at first transplant: 29

Longest kidney transplant longevity: 13 3/4 years

(Brief) notes (primary disease, current drugs): Focal schlerosing geoniphritis (<spelling??).
Apparently happened when 6 months old while had a bad case of tonsillitis, rhs kidney shrivelled and died then and lived the rest of my life on the one but didn't find out about it and that I had kidney failure in remaining kidney until age 25.
Meds: 100mg Cyclosporin am/pm, Cellcept 1g am/pm, Cardizem 250mg am, Prednisolone 5mg am, Irbesartan 75mg am.
Other issues since kidney failure was a 3 month induced coma due to complications with my immune system and pneumonia. The machine was going to be turned off twice.
Prolonging issues include pulmonary fibrosis, degenerative bone disease of sacroiliac joint, joint pain, insomnia, fatigue.
Kidney Transplant 27th December 2001, P.A. Brisbane, Qld. Australia.

Underground Miner. Go Hard or Go Home.
jo
Member
Username: Joske

Post Number: 1
Registered: 09-2014
Posted on Thursday, September 18, 2014 - 04:33 pm:   Edit Post Delete Post Print Post

Name: Jaden

Number of transplants: 1

Age at first transplant: 18 Months

Longest kidney transplant longevity: 9 years- still going living related donor

Tacrolimus Sandoz, mycophenalate
Posterior urethral valves
Shazia
Member
Username: Shazia

Post Number: 1
Registered: 10-2014
Posted on Monday, October 27, 2014 - 10:13 am:   Edit Post Delete Post Print Post

Name: Shazia
Number of transplant: 1- kidney, live related brother
Age at 1st transplant: 42 years.. 2.5 months back transplantation
Drugs started on tacrolimus, cellcept, but WBC dropped to 1.9 2 days back so right now stopped cellcept and all prophylactic med like ciprofloxacin, septran, valgancyclovir( valcyte) except tacrolimus which has gone up to 2.2 today, now waiting for WBC to reach 4000 to start myofortic as since transplantation loose stool is accompanied which got better now.
sales
Member
Username: Cherif2020

Post Number: 1
Registered: 11-2014
Posted on Friday, November 07, 2014 - 05:39 am:   Edit Post Delete Post Print Post

Maybe copy this template:

Name:sales

Number of transplants: 1

Age at first transplant: 40 years

Longest kidney transplant longevity: 11 years and it still works - no related

(Brief) notes (primary disease, current drugs):}
prograf 1mg per day / pred 5mg/ MMF
Em4UK
Member
Username: Em4uk

Post Number: 1
Registered: 11-2014
Posted on Saturday, November 15, 2014 - 09:52 pm:   Edit Post Delete Post Print Post

Name: Emily

Number of transplants: 1

Age at first transplant: 28

Longest kidney transplant longevity: Technically zero

Kidneys are too small: unknown etiology. Only found out I had kidney disease last year. Currently just on Cyclosporine. Renal Vein Thrombosis during first live donor (brother) transplant surgery. Transplant damaged from surgery, never saw improvement. Scheduled for 2nd live donor transplant in December (paternal uncle).
Becki
Member
Username: Becki1707

Post Number: 1
Registered: 11-2014
Posted on Thursday, November 20, 2014 - 11:27 am:   Edit Post Delete Post Print Post

Name: Rebecca

Number of transplants: 1

Age of first transplant: 23

Longest kidney transplant longevity: 7 years now and creatinine at 1,8 at the moment

Jeune syndrome which only affected the kidneys, pretty rar disease, never actually met or talked to someone who has it;)

Taking 2*2 mg prograf, 5mg prednisolone, 2*500 mg cell-cept, some bloodpressure medication 2 pills a day, 4*600 mg potassium.
Becki
Member
Username: Becki1707

Post Number: 2
Registered: 11-2014
Posted on Thursday, November 20, 2014 - 11:30 am:   Edit Post Delete Post Print Post

Name: Rebecca

Number of transplants: 1

Age of first transplant: 23

Longest kidney transplant longevity: 7 years now and creatinine at 1,8 at the moment

Jeune syndrome which only affected the kidneys, pretty rar disease, never actually met or talked to someone who has it;)

Taking 2*2 mg prograf, 5mg prednisolone, 2*500 mg cell-cept, some bloodpressure medication 2 pills a day, 4*600 mg potassium.

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