| Author |
Message |
Satty
Member
Username: Satty
Post Number: 16
Registered: 06-2012
| | Posted on Tuesday, June 26, 2012 - 09:18 pm: | 
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Hi all,
Has anybody here got the diagnosis of IgA nephropathy? If yes, what is the success with a kidney transplant ? Is it any different than when the cause is something else or unknown? I read the IgA nephropathy does recurr in the transplanted graft as well.
Please give me some insight into this.
Awaiting anxiously for your replies.
Satty |
Kidneyboy
Member
Username: Kidneyboy
Post Number: 49
Registered: 01-2012
| | Posted on Tuesday, June 26, 2012 - 10:03 pm: |
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Hi Satty,
This is the form I have and as I described in earlier replies, it is an inflammation of the nephrons (filters) in the kidney. Though what causes them to inflame and shutdown could be different for each case, the end result is declining function and eventual kidney failure. I have not had a relapse post transplant, though I have heard it is possible. I do agree with others here, about writing things down. I keep a daily diary, which has helped me identify emerging patterns and feelings associated with any changes in medication or diet. Good luck. |
Satty
Member
Username: Satty
Post Number: 17
Registered: 06-2012
| | Posted on Tuesday, June 26, 2012 - 10:06 pm: |
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Hi kidney boy.....thanks for the explanation....can i know for how long have you had your transplant and if it was from living donor? |
Kidneyboy
Member
Username: Kidneyboy
Post Number: 50
Registered: 01-2012
| | Posted on Tuesday, June 26, 2012 - 10:22 pm: |
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Hi Satty.
I am in my 12th year post TX. I received a cadervaric donation after three years on hemo. My IgA was a result of strep throat infections , whose toxins "poked" holes in my kidneys. Diagnosed in my early twenties, my renal function declined for twenty years before dialysis and transplant was required. I hope your husband will not be on dialysis for long, I survived it but wouldn't wish it upon anyone. Good luck to you both. |
Satty
Member
Username: Satty
Post Number: 18
Registered: 06-2012
| | Posted on Tuesday, June 26, 2012 - 11:20 pm: |
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Thats great .....12 yrs ......how are you doing now? I am sure there are many more healthy yrs to come....
My wishes and blessings... |
Jason
Member
Username: Jason
Post Number: 155
Registered: 02-2010
| | Posted on Tuesday, June 26, 2012 - 11:44 pm: |
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Hi Satty,
My original kidney disease was IGA or Berger's disease. This is what caused my kidney's to fail. I read in a previous post that your husband is going to Mayo next week. Great place. They have much expertise in IGA and are always doing research. I was in there first study on IGA and they found that fish oil helped. I have had three kidney transplants. The IGA never recurred in any of the transplants. Good luck to you and your husband next week in Rochester.
Jason |
Satty
Member
Username: Satty
Post Number: 19
Registered: 06-2012
| | Posted on Wednesday, June 27, 2012 - 12:10 am: |
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Yes jason...we are going to Mayo next week for second opinion. If i may ask, how long did each of ur earlier transplanted kidneys last or what was the reason of their failing? Its great to know that the IgA never came back......gives me some reassurance..... |
Kuldip Gill
Member
Username: Ksgill
Post Number: 31
Registered: 06-2007
| | Posted on Wednesday, June 27, 2012 - 12:31 pm: |
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Satty,
I was diagnosed with IGAN also in my twenty's and i as kidney boy survived it for 25 years. I did not go into dialysis as my sister cam through in donating her kidney.
I also had an ectopic kidney.
This is going to be my 5th year post transplant .So far the team is monitoring and no recurrence and as for fish oil i agree it did help during the diagnosis and maintained it.
My was discovered during a routine checkup annual checkup.
Transplant date : July 30,2007
Donor : Sister
Medication :Twice a day
2.0 mg Tacrolimus
500 mg Mycophenolate |
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Satty
Member
Username: Satty
Post Number: 21
Registered: 06-2012
| | Posted on Wednesday, June 27, 2012 - 12:44 pm: |
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Hey kuldip...thanks for replying....i guess you are a sikh ( i am too...satbir is my actual name). kuldip did the docs ever mention about the recurrance of IgA in the transplanted kidney? Or if ever it recurrs what are the consequences and if it is treatable before hand?
Any info in this regard will help me tons.
Satty |
Doug
Member
Username: Dlhemsley
Post Number: 24
Registered: 08-2007
| | Posted on Wednesday, June 27, 2012 - 01:18 pm: |
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I had flare ups when I was in college and was not diagnosed with kidney problems until a few years later at a regular checkup. I did not know for sure I had IGA until a few years ago.
So around 1987 had flare ups, about 1991 diagnosed with kidney problems, 1994 Kidney Transplant from brother. 2008 gradually started losing kidney function with IGA showing back up. Started PD Dialysis a few months ago and feel good. So my transplant lasted 18 years before going back on dialysis. So unfortunatly IGA can come back. The good part of IGA is you are usally healthy except for the kidney problems.
Doug
Kidney Transplant March 9, 1994
From Living Donor Brother |
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Doug
Member
Username: Dlhemsley
Post Number: 25
Registered: 08-2007
| | Posted on Wednesday, June 27, 2012 - 02:27 pm: |
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I had flare ups when I was in college and was not diagnosed with kidney problems until a few years later at a regular checkup. I did not know for sure I had IGA until a few years ago.
So around 1987 had flare ups, about 1991 diagnosed with kidney problems, 1994 Kidney Transplant from brother. 2008 gradually started losing kidney function with IGA showing back up. Started PD Dialysis a few months ago and feel good. So my transplant lasted 18 years before going back on dialysis. So unfortunatly IGA can come back. The good part of IGA is you are usally healthy except for the kidney problems.
Doug
Kidney Transplant March 9, 1994
From Living Donor Brother |
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Kuldip Gill
Member
Username: Ksgill
Post Number: 32
Registered: 06-2007
| | Posted on Thursday, June 28, 2012 - 10:01 am: |
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Satty,
Yes i am a sikh but not moderate , live in Vancouver , canada and had my transplant in St. Paul's hospital. Kidney donated by my sister who lived in Malaysia. Where are you located?
So far what my nephrologist is saying it all depends upon the individual and no studies really have shown recurrences.Given the lack of a prospective study involving protocol biopsies, the true risk of significant graft dysfunction and/or graft loss from recurrent disease is unclear. From what i have been told there is a 58% chance of recurrence but after 15-25 years. So you have a long ways to go!
Here is a good link to read and maybe give you a better understanding.
http://cjasn.asnjournals.org/content/5/12/2363.full
Transplant date : July 30,2007
Donor : Sister
Medication :Twice a day
2.0 mg Tacrolimus
500 mg Mycophenolate |
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Satty
Member
Username: Satty
Post Number: 22
Registered: 06-2012
| | Posted on Thursday, June 28, 2012 - 10:55 am: |
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Thanks a ton kuldip.....your explanation helped get rid of some of my fears......we are also in the process of getting family members screened for transplant. My husband and my sis in law have same blood type...so we are praying that they turn out to be a match...
Is there any impact on IGA recurrance if donor is blood relative ( like sister)? And if i may ask how much of a match were you with your sister ( like 3/6)?
you all are such wonderful people and you are helping me with all my stupid queries....i atleast sleep better after seeing your replies.....
You all are becoming my life line.... |
cruizin
Member
Username: Cruizin
Post Number: 311
Registered: 09-2010
| | Posted on Thursday, June 28, 2012 - 12:20 pm: |
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I have what is believed to be chronic glomerulonephritis, and may have IgA, which is a type of chronic GN.
Since you mentioned the Mayo Clinic, they did a small study of daily fish oil intake showing that it slows the progression of IgA:
http://www.ncbi.nlm.nih.gov/pubmed/7935657
It's one of the few natural things that has been shown to have an effect, so It's a great thing to take both pre- and post-transplant, as I did and still do. My kidneys slowly went from 50% to 10% function over 16 years.
Received kidney Mar 16, 2011, from my brother! 3/6 match
St. Joe's, Hamilton, ON
Peritoneal dialysis Nov '08 - Mar '11
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
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Satty
Member
Username: Satty
Post Number: 24
Registered: 06-2012
| | Posted on Thursday, June 28, 2012 - 01:46 pm: |
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Kuldip.....i am currently in minnesota(US).....my husband is here on a work assignment.....we are currently reffering to University of Minnesota hospital and the Mayo clinic as well(for second opinion).
Cruizin....the docs here have still not found out what caused my husbands kidneys to fail. They were suspecting IgA but not sure. Mayo clinic is still going thru his reports and more blood tests. Looks like we might end up being totally undiagnosed about the cause. Docs say transplant is his option. Trying to figure out if someone from the family is a match. My husband is just 31 yrs old and had no symptoms at all. Just high BP( which cld have been caused by the renal failure or it cld have been the other way round, not sure what caused what).
Hoping that we get his transplant and he has a good life for long after that. Praying that he is able to lead a near normal life.
Your help and guidance is very important to me in this time of crisis...
Satty |
Elizabeth
Member
Username: Eacreel
Post Number: 1
Registered: 02-2014
| | Posted on Tuesday, February 11, 2014 - 09:28 am: |
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Hey everyone. My mother is currently recovering from a kidney transplant. She was diagnosed with IgA nephropathy when I was 6 months old (I am almost 25 now). She had an amazing doctor in Mobile, AL that kept her off of dialysis and with no transplant up until this year. She followed what he said exactly--got a renal dietitian, ate a renal diet, rested when she needed rest, etc. She received a transplant on December 20th, 2013. She wasn’t even on dialysis when she received one! There is hope out there!
According to my mom’s doctor, IgA is not genetic. None of her family were matches (mom is O-). She received a cadaver donor.
She also did take fish oil daily.
She currently is in the hospital at Ochsner in New Orleans, LA. We are currently dealing with antibody levels. She has been through parathyroid removal surgery, plasmapheresis, high doses of steroids, etc. Mom had high antibody levels pre-surgery.
Has anyone had any of this associated with IgA?? I’m posting for her since she is in the hospital at this time.
Thanks and GOD BLESS! There is hope!! |
Kidneyboy
Member
Username: Kidneyboy
Post Number: 56
Registered: 01-2012
| | Posted on Tuesday, February 11, 2014 - 11:00 am: |
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Hi Elizabeth,
Please congratulate your mother on her transplant. May she enjoy many years in good health.
I was first diagnosed with IgA nephropathy in 1994. After a few years, I required Hemodialysis and waited three years for my first TX. None of my family had any kidney problems. I have had some of the treatments/symptoms as your Mom. I'm sure after the Tx team deals with the antibody issues, her dosage of steroids and medications will slowly be reduced. I had parathyroid surgery too (more to do with kidney failure than IgA.)
A careful balance of medications will be used to keep her immune system from attacking the organ. Blood work will be the best indicator of any trouble. Success will require diligence with appointments, tests, and taking meds. Transplantation is a treatment, not a cure. It is infinitely better than dialysis.
The best advice I can give her going forward is:
1. Try to stay calm(the routine can be overwhelming.)
2. ASK, ASK, ASK as many questions as you want from the Tx team.
3. Keep a daily log/diary to identify any trends, symptoms, and feelings.
4. Be a "crybaby" - tell your team about anything/everything. No one hands out medals for toughing it out, and it is easier to treat a problem before it becomes major.
I will keep you both in my thoughts and prayers. You may wish to chat with members on the sister site TRANSPLANT FRIEND.COM. |
Elizabeth
Member
Username: Eacreel
Post Number: 2
Registered: 02-2014
| | Posted on Wednesday, February 19, 2014 - 10:19 am: |
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Thank you so much Kidneyboy. Just called my mom and read your reply to her. We both agree that doing a log/diary is a very good idea. She is now at home (in Mobile) and has a follow-up appointment in New Orleans today at 4pm. We will know more about her levels when they review the blood work this afternoon with her.
I have heard about IgA coming back into the transplanted kidney..do you know how common this is? or if it happened to you? |
Kidneyboy
Member
Username: Kidneyboy
Post Number: 61
Registered: 01-2012
| | Posted on Wednesday, February 19, 2014 - 11:51 am: |
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Hello Elizabeth,
My IgA nephropathy was diagnosed in my thirties and took 15 years to reach ESRD requiring a transplant. That Tx lasted thirteen years before it failed. Though many tests were performed, the general consensus was that the IgA had returned, damaging it. This was conjecture based upon the absence of a definitive cause. I received another Tx on Nov. 23, 2013.
It is important to remember that what happened to me may not occur with your mom. IgA returning is a possibility, not a surety. I hope this is helpful and that your mother is doing well and will enjoy many years in good health.
Stay well,
Norm |
Lisa
Member
Username: Lisag
Post Number: 3
Registered: 03-2014
| | Posted on Monday, March 10, 2014 - 11:45 am: |
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Hi Elizabeth,
Congrats to you and your mom it is an exciting time! I hope she is doing well. I was diagnosed with IgA nephropathy at 25 when I found out my kidneys had already failed. I didn't know I had any issues with my kidneys before that. I was on Hemodialysis for 3 years before receiving a kidney from a cadaver donor. I didn't have those issues other than the high steroids which were gradually lowered in the first year. I am now 3 years post kidney transplant and am doing well. I haven't any signs of IgA nephropathy and we have been keeping an eye out for protein in the urine. |
Lisa
Member
Username: Lisag
Post Number: 4
Registered: 03-2014
| | Posted on Monday, March 10, 2014 - 11:47 am: |
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Hi Elizabeth,
Congrats to you and your mom it is an exciting time! I hope she is doing well. I was diagnosed with IgA nephropathy at 25 when I found out my kidneys had already failed. I didn't know I had any issues with my kidneys before that. I was on Hemodialysis for 3 years before receiving a kidney from a cadaver donor. I didn't have those issues other than the high steroids which were gradually lowered in the first year. I am now 3 years post kidney transplant and am doing well. I haven't any signs of IgA nephropathy and we have been keeping an eye out for protein in the urine. |
Anil Suvarna
Member
Username: Aksuvarna
Post Number: 1
Registered: 11-2014
| | Posted on Monday, November 10, 2014 - 05:56 am: |
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Hi Satty,
Did your husband got Tx done? Pl update on the post Tx complex situations occurred.. |
kakarp
Member
Username: Kakarp
Post Number: 77
Registered: 02-2009
| | Posted on Sunday, November 23, 2014 - 08:36 pm: |
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I was diagnosis with IgA back in 1980. I was told I would need dialysis and or a transplant in 15 to 20 years. They were real close. I need my transplant Oct. 17, 1994. I just had my 20 year post transplant anniversary this past Oct. We know my IgA is back found that out about 8 years ago (maybe more) with kidney biopsy. But my kidney is still working great. My creatinine stays at a normal of about 1.4+. It did bounce up to about 2.2 one month years ago but came back down and stays at a normal. I and my doctors hope I’ll have my kidney for many more years to come. I do wish you well and many years of health as I have had.
Best of luck
Kevin
Kidney Transplant 10.17.1994
Received from my daughter
Living in central Mass.
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