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Permalink Reply by Walt on February 22, 2012 at 2:46pm

I've heard mention of "cellular memory" from others but never experienced it myself.  Supposedly the tissue in the transplanted organ "members" how it was nourished in the previous body.  This memory is supposed to be transmitted to the new host.  An example would be that the original host liked corn nuts and beer.  The new host would then have a craving for corn nuts and beer even if they had never consumed them before.  Personally, I don't believe in this type of cellular memory, since it requires the mind to make the association, but it may occur at the cellular level.  Not sure at what level you think that you are experiencing this phenomenon.  Sorry that I don't have more insight.

On second thought, if your husband is still on high levels of prednisone, it can certainly affect his moods, memory and thought processes.  If this is the case, be sure to consult with his docs to see if an adjustment in dosage is reasonable.  Prednisone is a big benefit to transplant patients, but it has many known side effects.

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Permalink Reply by Anna Harris on February 22, 2012 at 3:36pm

Thank you for your reply.  As of right now my husband isn't the same person he was pre-transplant.  Since the transplant he seems to have a very different personality and does have the food issue that you mentioned.  Yes he is on Prednisone however he only is getting 5mg once a day so I don't think that is the problem.  There are many out there, including doctors, that don't believe there is any relationship in this cellular memory issue.  I am experiencing a very different personality from him as well as others have noticed it and remark about the change in my husband.  So, it's not just me.  It's just such a change and I sometimes think he is fighting within himself since he doesn't understand what is going on.... you know like fighting the demon.  My husband is doing really well physically and has several "0" rejections and is due for another bi-op soon.  I'm not complaining, or maybe I am, but I just want to understand so I can help him with this adjustment.  It's been 6 months since the transplant but it's been a rough one with the personality.  I am a cancer patient going through chemo this whole time and taking care of him as well as myself.  So, it's been a journey since we have no help here.  It's all me.  I'm feel blessed because I prayed I would live long enough to see my husband get a heart and I was blessed to see this wonderful event in his life.  And... how grateful to the donor.  I just wish it wouldn't take up to a year to find something out about the donor.  It might help us to understand what is going on within him.  Maybe I am reaching out to far on this, but I just want to help my husband adjust on a better level.  He had an MRI of his brain on Sunday and we haven't gotten the results yet, but the transplant team told him cellcept can cause brain damage and I looked it up under "brain damage with cellcept" and there it was with "warning" first thing.  Are you on Cellcept?  Could you tell me a little about yourself?  How long out since your transplant?  Only if you wish to share.  

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Permalink Reply by Walt on February 22, 2012 at 4:12pm

Yes, I'm on cellcept (1500mg twice a day).  I had my transplant 5 years ago.  Each of us has our own peculiar reaction to the transplant process.  A lot of it is mental.  Does your transplant center have social workers that you might get some insight from?  In my own personal opinion I believe that the transplant process is at least as hard on the caregivers (you), as it is on the patient.  My experience is that the social workers associated with the transplant team can provide significant support.  In my case my wife and I attend a heart transplant support group on a monthly basis.  It is offered by the U of Michigan which is where I had my transplant.  FYI, I'm 61 and I had a very long illness from diagnosis to transplant (12 years).  That may have allowed me to gradually come to terms with transplants more easily, although the transplant process was thrust upon me just prior to having an LVAD inserted to keep me going until a heart could be found for me. 

Mentally, after the prednisone was reduced, I think that I became a more even tempered individual.  I look at each day as a new opportunity to live, love and learn.  Your husband probably didn't have the same set of circumstances that I had, so I think that you would benefit greatly from the support of the social workers.  I hope that you have access to this kind of assistance.  I know that it can be very difficult to empathize with a transplant patient who has not or can not come to terms with the experience.  I do remember that the 1st year was the most difficult and regaining stamina took a long time.

I hope this helps provide some insight.

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Permalink Reply by David on February 23, 2012 at 7:36am

 Hi Anna, I agree totaly with Walter on the Predizone, am 20 months now post heart transplant, am on 500 mg cellcept a day, and was off Preizone with in 9 months, yes I also had my good and bad days, but as Walter explained about his pre transplant exprience, I to had an LVAD 15 months prior to transplant and considering all the stuff I endured probally what has made transplant much more smoothly,  and I also was around  on and off 10 to 15 other people who were going through what I have and had gone through , but for me here in the Central NY  area , there are very few support groups, and none of them are organ transplant type of groups ..  If you have a chance for you and your husband to attend a group I think it would help Greatly ! but next trip to your transplant cntr . try and get a hold of the txplt coordinator . social worker, etc:  and see what advice they have as well ..    I  hope the very very best for you and your husband ..    David.

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Permalink Reply by Anna Harris on February 27, 2012 at 9:46am

Thank you David for your email.  I have an update to share with you.  My husband got a phone call out of the blue from the transplant team that Cellcept can cause brain damage (you can google brain damage from Cellcept and there is a warning about this problem).  So, they sent him for an MRI of his head to see if my husband did indeed have any damage.  When my husband told the doctor that he has had a 3 week long headache they insisted he have the MRI as quickly as possible.  Well...... the MRI came back and said my husband had had 2 strokes.  Two strokes but don't know when.  So he has an appointment for March 12 with a neuro doctor to find out what is going on.... plus the transplant doctor said the Cellcept maybe causing some problems in the area of the damage that the strokes are. The transplant doctor is curious like we are about what is happening.  As for the anger issues, he had not been anger BEFORE the transplant only after.  He is only on 5 mg prednisone a day so I don't think that is it.  My husband will have another heart bi-op on March 6th and so far no rejection and we are hoping for that to continue.  

The history of my husband isn't like yours, however, they did talk to us about the LVAD just days before he got his heart.  My husband had 2 heart attacks about 3 yrs ago and had a quad by-pass, within 3 months the grafts went 100% closed and he had everything (to long to write everything that was wrong with him) wrong that could go wrong with his heart.  He talked to the transplant team about a year before they finally put him on the list.  He was on the list for 9 months and finally got one.  When they took his heart out it was the size of a large mellon and only had days to live.  

As for support groups... Vanderbilt says they have support groups but I'm not sure it really took off and I don't think my husband would go anyway.  In fact, my husband doesn't talk about even wanting to contact the donor family, or even mention anything about his transplant.  Like you and others I've met online, you talk about what you have been through and seem to support others.. my husband just doesn't do any of those things.  I've tried to get him to read this website and others and talk about the gift he was given.  I'm stumped.  I am trying to understand why he is so different.  I feel sorry for him that he is going through so much and there are times he, well.... he is the man I've know but then not completely.  I do appreciate you and the others that have taken the time to share with me because it makes me more aware what it could be... thank you David and Walter.  I wanted to let you know what was on his MRI and will let you know what we find out after the appointment with the neuro doctor.  Anna

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Permalink Reply by Walt on February 27, 2012 at 9:59am

Anna, sorry to hear about the strokes.  I have no direct knowledge about them, but I believe that they can alter personalities because of the way that they impact the brain making it much harder to communicate or perform various functions.  I would not be surprised if this is the primary cause for the changes that you have noted.  Hopefully your medical team will have methods to correct or ease the impact on your husband.  I'm sure that you would like to have the same person back in your life.  Good luck and stay in touch as you learn more.

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Permalink Reply by Anna Harris on February 27, 2012 at 10:14am

Walter... Thank you for caring.  My husband is only 61 but we think we figured out when one of the strokes may have happened.  When he had his quad by-pass he had a claw hand and his arm was close to his chest, sight issues, speech problems and dragged his one leg.  We asked the doctor about these problem but they said it was a nerve that had been nicked in his arm during the by-pass.  The other things they just disregarded.  But they were all the signs of a stroke and my husband even said he thought he had a stroke.  The second one is still a mystery because he didn't have any signs of one, outward anyway.  And since we think these strokes were before the transplant and he didn't have any anger issues then it has to be something since the transplant.  It's really a mystery!  My husband has put himself back on lexapro and I've seen some small mellow in his personality, but still not the same man of 27 yrs.  I'll take him anyway he is but I just hate he seems to be fighting inside and questions these headaches.  There are days he simply can't get out of bed.  Two days this past week were spent in bed all day.  He use to love to go to work and now... he has such a hard time getting up and goes in late and comes home exhausted... he sits behind a desk.  I guess we were expecting that after the transplant in a few months he would be back to a close normal.  Maybe not.  Thanks Walter for replying and being interested.... Anna

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Permalink Reply by David on February 27, 2012 at 11:24am

 Thx For the update Anna , am praying everything turns out ok,    David

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Permalink Reply by Walt on February 27, 2012 at 2:45pm

Anna, I'm surprised that your husband has already returned to work.  I never did go back.  I would have liked to, but my recovery was too long and my company just let me go.  Perhaps your husband tried to return too quickly.  It took me a full year before I felt strong enough to resume "normal" activities.  

As far as your husband not wanting to interact with other transplant patients, it sounds like he is a fairly private individual and doesn't want to share his innermost thoughts.  I can relate to that as well, but the opportunity to learn from someone else's experience is a great way to avoid many of the pitfalls that come our way.  He could attend a support group and simply listen.  He may or may not benefit from it, but he certainly can't benefit if he doesn't try.  I would suggest that you might benefit from the interaction with other caregivers and learn from their experiences as well.  I know this is a difficult situation for your family, but I hope that you aren't trying to remedy the situation by yourself.  It's a big job and you could use all the help that you can find.  Hopefully things will start to improve, but even then it will likely be a day by day situation.  Again, good luck and remember we are here for you.

Anna Harris said:

Walter... Thank you for caring.  My husband is only 61 but we think we figured out when one of the strokes may have happened.  When he had his quad by-pass he had a claw hand and his arm was close to his chest, sight issues, speech problems and dragged his one leg.  We asked the doctor about these problem but they said it was a nerve that had been nicked in his arm during the by-pass.  The other things they just disregarded.  But they were all the signs of a stroke and my husband even said he thought he had a stroke.  The second one is still a mystery because he didn't have any signs of one, outward anyway.  And since we think these strokes were before the transplant and he didn't have any anger issues then it has to be something since the transplant.  It's really a mystery!  My husband has put himself back on lexapro and I've seen some small mellow in his personality, but still not the same man of 27 yrs.  I'll take him anyway he is but I just hate he seems to be fighting inside and questions these headaches.  There are days he simply can't get out of bed.  Two days this past week were spent in bed all day.  He use to love to go to work and now... he has such a hard time getting up and goes in late and comes home exhausted... he sits behind a desk.  I guess we were expecting that after the transplant in a few months he would be back to a close normal.  Maybe not.  Thanks Walter for replying and being interested.... Anna

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Permalink Reply by bubba59 on December 18, 2012 at 9:48pm

anna, i don't know if you still follow the posts. if you do i have some info for you and your huaband if you would like. bubba4ever59@yahoo.com

take care

neil

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