Gvhd

My husband had an allogeneic mini-transplant in 11/05.  It was a 10 point, female, unrelated match.  He ended up the first month with GVHD of the skin and gastro.  After putting him on prednisone, he faired well.  His gut GVHD healed and his skin finally got better in about 6 months.  Just before his 1 year check up he got it back again and in December it flared with a vengence.  With all the high doses of prednisone he has gotten Stage 3 kidney disease and asvascular neucrosis in his hips.  He finally got off the prednisone this past July after a long taper and now his gastro GVHD has returned and his skin GVHD has flared.  They want to put him on prednisone again or give him a new shot that has had very little success for GVHD and has many side effects (severe infections, cancer).  He has been hospitalized since November for many pneumonias and is susceptible to infections.  Does anyone have any ideas?  We are desperate.  He has been on every type of immunosuppressant, has done total body irradiaiton, and ECP (photopheresis) treatments.  Help, we are desperate and his depression is getting worse.  It would seem someone out there has been through this and has come through.  Please help.

Hi,  my husband had a BMT unrelated, in 2003, after about a year he ended up with GVHD.  He got the skin, lungs, eyes, and muscle GVHD.  I can try to help you with questions if you have them.  He has been through the different anti rejection, and steriod type treatments, as well as ECP treatments, which we have just finished up.  Now we are just dealing with oxygen useage, hormones are all wacked and trying to get those figured out, and the random depression that he usually gets every once in a while.  One of the things that we have benefited from was buying an air purifier, it seems to have had quite an effect on how often my husband gets a cold, which goes bad very fast.  Please feel free to ask me anything, we have been battling this for a long time and I know that it can get hard for both people in the home.  I will understand anything, I feel as if I can actually say I have been there and can now help and support someone else through this.  Take Care and hang in there....

Thank you for responding.  God, I can't believe you have been dealing with this since 2003.  Does your husband have a normal life?  My husband looks like a walking skeleton.  He's lost 80 lbs. since the transplant.  He was just admitted today with GVHD of the gastro and he's been fighting diarrea and lack of appetite.  He is so depressed and it's only been since 2005.

We tried the ECP and it didn't work.  What worked for him?  Has the skin GVHD improved?  They want to put him back on steroids but it wreaks havoc with his kidneys.  For a while he did dialysis and that was a nightmare with the edema, low blood pressure, infections of the port, etc.  Anything that has worked on your husband, please pass on.  Have you heard of anything naturopathic that works.  Don't you think somebody out there has been through this and has made it.

I have special filters throughout the house and an air purifier in the bedroom. 

Where are you located?  Are your husband's doctors good?  My husband's doctor looks like he is giving up as well.  He's such a good doctor, but I truly believe when they see so many issues, they tend to write them off. 

Please let me know anything that helps. Thank you. 

 

 

 

 

I know that it is tough, but hang in there..  I talked to my husband and he said that if your husband is dealing with the dryness and itchiness of skin that GVHD gives them, then he has found that the foot lotion Kerasal works wonders on giving the skin time to get back to normal, and eating things high in fat and oils, not sure if this will help with the diarhhea but it is the only natural thing that we have found.  With the diarrhea, have they checked him for C. difficule???   This might be something that you want to ask the doctor..not sure if it will help, but chemo and immuno suppressed people can get this quite easy. 

 It is such a bummer when you start second guessing the doctors, we have been there too.  Currently we are going to the University of Michigan and they have been awesome...it just depends on what doctor you get, since it is a clinic we seem to get a different doctor every time we go down there.

I don't want to scare you at all, but my husband is still not working, but we are getting by.  Life is a constant challenge and can feel overwhelming quite often.  We are pretty much stable with the transplant health issues, except for the lung things, but it is now dealing with the depression, hormone inbalances, and just dealing with not having a normal life.  I am not sure if I mentioned counseling and meds before, but both my husband and I have been through this and it has helped us deal with things better.  I have just started on depression meds this year and couldn't live without them.  We are more together on our thoughts and wishes concerning his healthcare and our life in general.  I am not sure how your support system is where you are, but we lost quite a few friends, because they couldn't handle the way the disease was effecting my husband.  I don't want to bring you down anymore, but I wish that there was someone that would have told us some of these things...just stay in touch with those that are your support system and feel free to get a hold of me anytime.  Friends are important and getting away for awhile is important for you as well...don't feel guilty, you need time to recover and be yourself as well..This is one of the problems I had when I first started to go through this...I felt guilty about everything.  Anyways, I am adding my e mail address as well, just incase I don't get to check this quite often.  Take Care and I will keep you two in my prayers and thoughts. 

Sorry forgot to give you my e mail : 

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Take care