Author |
Message |
Carl
Member Username: Carlbullen
Post Number: 76 Registered: 01-2012
| Posted on Wednesday, June 27, 2012 - 11:57 am: |
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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 |
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Carl
Member Username: Carlbullen
Post Number: 77 Registered: 01-2012
| Posted on Wednesday, June 27, 2012 - 11:59 am: |
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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 |
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Carl
Member Username: Carlbullen
Post Number: 78 Registered: 01-2012
| Posted on Wednesday, June 27, 2012 - 12:00 pm: |
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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 |
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Satty
Member Username: Satty
Post Number: 20 Registered: 06-2012
| Posted on Wednesday, June 27, 2012 - 12:25 pm: |
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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: |
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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 |
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Cora
Member Username: Cora
Post Number: 492 Registered: 06-2007
| Posted on Wednesday, June 27, 2012 - 07:25 pm: |
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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 |
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Kidneyboy
Member Username: Kidneyboy
Post Number: 51 Registered: 01-2012
| Posted on Wednesday, June 27, 2012 - 07:27 pm: |
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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: |
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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: |
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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: |
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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 |
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Mark
Member Username: Moj
Post Number: 1 Registered: 01-2011
| Posted on Thursday, June 28, 2012 - 08:28 am: |
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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: |
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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 |
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Satty
Member Username: Satty
Post Number: 23 Registered: 06-2012
| Posted on Thursday, June 28, 2012 - 10:59 am: |
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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: |
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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: |
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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. |
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Anne
Member Username: Buckeye_4_life
Post Number: 226 Registered: 03-2008
| Posted on Thursday, June 28, 2012 - 12:29 pm: |
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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!! |
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Sue
Member Username: Sue
Post Number: 27 Registered: 11-2011
| Posted on Thursday, June 28, 2012 - 01:07 pm: |
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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
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Alinds
Member Username: Alinds
Post Number: 310 Registered: 09-2010
| Posted on Thursday, June 28, 2012 - 09:43 pm: |
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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: |
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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: |
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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: |
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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: |
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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: |
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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: |
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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: |
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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: |
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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: |
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[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: |
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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: |
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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: |
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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: |
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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. |
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jo
Member Username: Joske
Post Number: 1 Registered: 09-2014
| Posted on Thursday, September 18, 2014 - 04:33 pm: |
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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: |
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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: |
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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: |
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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: |
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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: |
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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. |