Changes after Transplant

Posted by 2011panc @2011panc, Nov 22, 2016

I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.

Thank you for this reply and for explaining the process. I am envious of your very positive experience as I wonder all the time about my donor. This may sound silly but I talk to my liver and pat myself as I do so. I am very aware that there is now another part of me and a part which is the reason I live. It feels good to talk.

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@wildcat I was not even told Sex and Age. And have sent a letter but have heard nothing. I think for me i was very moved by a television special i saw where a donor family met the recepiant of there loved ones Heart. I also received a Heart so it hit home. The wish of the donor family was to actually hear there loved onces heart again so they were set up with a stethoscope and there was not a dry eye in the house including mine. I keep hoping but know i may never hear. And actually the tv show meeting was 7 years after transplant so it may take a while. Im currently 1.5 years post.

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@danab

@wildcat I was not even told Sex and Age. And have sent a letter but have heard nothing. I think for me i was very moved by a television special i saw where a donor family met the recepiant of there loved ones Heart. I also received a Heart so it hit home. The wish of the donor family was to actually hear there loved onces heart again so they were set up with a stethoscope and there was not a dry eye in the house including mine. I keep hoping but know i may never hear. And actually the tv show meeting was 7 years after transplant so it may take a while. Im currently 1.5 years post.

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@danab I think you are right that it may take more time. I am nearly 9 years post transplant and now I know quite a lot about my donor and her family. I met her father and we maintain contact. However, I did not hear from them until 3 years following my transplant. I realize and respect that some families may never be ready to meet the recipients. I still have only met her father, as the rest of the family prefers to keep a greater distance. That is okay with me.

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@wildcat

Thank you for this reply and for explaining the process. I am envious of your very positive experience as I wonder all the time about my donor. This may sound silly but I talk to my liver and pat myself as I do so. I am very aware that there is now another part of me and a part which is the reason I live. It feels good to talk.

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@wildcat I didn't realize until I read your post that I also touch and talk to my pancreas. I also am very aware that I have part of someone else inside of me, as well as some titanium, mesh, screws, etc.

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@wildcat

Thank you for this reply and for explaining the process. I am envious of your very positive experience as I wonder all the time about my donor. This may sound silly but I talk to my liver and pat myself as I do so. I am very aware that there is now another part of me and a part which is the reason I live. It feels good to talk.

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@wildcat I talk to my liver too. Promise to keep it safe and healthy. I make this promise to my donor too. I haven't written to my donor's family yet but am slowly constructing what I'll say in my head. I don't know if the donor was male/female, young/older or where they came from. I wanted to give the family grieving time first.

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Yes, I also have a pig valve helping my heart to pump so that's an interesting conversation!

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@wildcat

Here in Scotland we are not given any information at all about our donor other than his/her sex and age. We know nothing about the circumstances of death or family details.

We are encouraged to write a letter of thanks to the family after six months; I can honestly say it was the hardest letter I have ever written but I was determined to write it and felt honoured to have the opportunity to express my heartfelt thanks.. I also sent a card, via my Transplant Unit, on the fifith anniversary to tell them I was very well and to thank them once again.

It seems from some of the comments here that this is different in the US, perhaps even different in each state. Obviously, I often wonder about my donor and his family. I am interested in others thoughts; did anyone find this knowledge difficult or unsettling? Is it common to meet the donors' family?

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@wildcat as @2011panc commented, often little is known, it’s up to the donor family and recipient, how much they wish to divulge. I wrote a letter of gratitude to my donor’s family and they responded, almost a year later, and told me quite a bit including her name, and signed their names. Like your donor, my donor was a very caring young woman, and very healthy. Her death was due
to bad management at the hospital ER so her widower has been very vocal and is trying to get legislation passed to guarantee this will never happen again. Of course when I saw an article in the paper I immediately recognized her name.
I think my case is highly unusual though.

Speaking of labs too, mine just moved from every month to every other month. I am almost three years post transplant. I have them drawn locally and then they are brought by courier, “stat”, to their lab in MA which gets the results right to Mass General. It’s great because I have them available that afternoon, usually by 2:00!
JK

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Just wanted to let you know that this week's Mayo Clinic Connect member spotlight highlights a member who has been active in this discussion on changes after transplant. Get to know more about @2011panc, her Connect experiences and what she enjoys on and offline.

Finding open, honest conversations with others: Meet @2011panc https://connect.mayoclinic.org/page/about-connect/newsfeed-post/finding-open-honest-conversations-with-others-meet-2011panc

Be sure to subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/ and see new member spotlights published every 2 weeks.

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Good Morning and Welcome!
Have you considered this Change? – Here is a post from Mayo Transplant Facebook that I saw this morning:

"Even if you haven't reached advanced age yet, sometimes with the transplant medications or side effects of organ failure or chemotherapy, patients can have reduced reaction times making things like driving less safe. Have an open and honest conversation with your doctors about your ability to drive and listen to those around you. Your independence is important, but so is your safety and the safety of others."
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-the-road-to-safe-driving-for-older-americans

——–
I have recently taken the opportunity to revisit the posts in this discussion. I want to invite anyone, old(?)members, new members, friends and family to join into this conversation.

I also want to tag the following experts to share any updates.
@2011panc, @danab, @luckonetj, @twocatmama, @ca426, @kellysmith1215, @donnan, @gaylea1, @garyandrade, @bexhall, @linmarie, @metallicpea, @linmarie, @wkary.

How are you doing? Have your changes become a normal part of your life? What would you say to a new transplant patient about how to live with changes?How do you manage any new changes?

New transplantees, You are among friends, and I invite you to join in with changes, questions, comments. We were all new once and want to support you.

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@rosemarya

Good Morning and Welcome!
Have you considered this Change? – Here is a post from Mayo Transplant Facebook that I saw this morning:

"Even if you haven't reached advanced age yet, sometimes with the transplant medications or side effects of organ failure or chemotherapy, patients can have reduced reaction times making things like driving less safe. Have an open and honest conversation with your doctors about your ability to drive and listen to those around you. Your independence is important, but so is your safety and the safety of others."
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-the-road-to-safe-driving-for-older-americans

——–
I have recently taken the opportunity to revisit the posts in this discussion. I want to invite anyone, old(?)members, new members, friends and family to join into this conversation.

I also want to tag the following experts to share any updates.
@2011panc, @danab, @luckonetj, @twocatmama, @ca426, @kellysmith1215, @donnan, @gaylea1, @garyandrade, @bexhall, @linmarie, @metallicpea, @linmarie, @wkary.

How are you doing? Have your changes become a normal part of your life? What would you say to a new transplant patient about how to live with changes?How do you manage any new changes?

New transplantees, You are among friends, and I invite you to join in with changes, questions, comments. We were all new once and want to support you.

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Thanks, @rosemarya This is actually very timely for me, if we ever manage to get our acts together and sell our home to downsize. I am very conscious of not being further away from Boston since that is where I have the majority of my medical care, except for my PCP, but I hadn't thought much about convenience to other things if I had to stop driving. That's tricky in the area where I live. There is very little public transportation. I abhor being dependent on anyone so I would really like to be close to shopping, etc. to not have to rely on anyone other than myself and my husband.
Thanks for posting.
JK

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Hi @rosemarya well im coming up on year 2 in Jan 2020. I am so blessed that the Lord has given me this new Heart and even with challenges due to viruses i am very happy with my life. I have had a challenging 6 months with my blood count issues but with the great staff of Doctors i believe we may have a good plan in place. My dreams to achieve an ability to do more hiking and camping is probably the area i most miss. Just when i think my workout plan is getting results i have to take a break due to low platelets, wbc, hemoglobin etc. Then the challenges of getting the insurance company to agree with the doctors can be stressful at times. But with prayer and some pleading we now have the ability to get the treatment on a regular basis that seems to help my blood counts that is IVIG on a monthly cycle. Just this week my platelets came up from 22 at the beginning of oct to 44 this past Tuesday. And my wbc is now back in the normal range. Hemoglobin went from 8.8 to 10.0 also. So the doctors let me start working out again. Easy at first but it felt good to get back in the gym for a 10 min workout plus about a mile walking. Which when my counts are low they don't want me doing any strength training just some short walks. I was getting a little tired of being stuck at home. Other than the blood counts tho the Heart is doing great and overall i feel good.

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@danab

Hi @rosemarya well im coming up on year 2 in Jan 2020. I am so blessed that the Lord has given me this new Heart and even with challenges due to viruses i am very happy with my life. I have had a challenging 6 months with my blood count issues but with the great staff of Doctors i believe we may have a good plan in place. My dreams to achieve an ability to do more hiking and camping is probably the area i most miss. Just when i think my workout plan is getting results i have to take a break due to low platelets, wbc, hemoglobin etc. Then the challenges of getting the insurance company to agree with the doctors can be stressful at times. But with prayer and some pleading we now have the ability to get the treatment on a regular basis that seems to help my blood counts that is IVIG on a monthly cycle. Just this week my platelets came up from 22 at the beginning of oct to 44 this past Tuesday. And my wbc is now back in the normal range. Hemoglobin went from 8.8 to 10.0 also. So the doctors let me start working out again. Easy at first but it felt good to get back in the gym for a 10 min workout plus about a mile walking. Which when my counts are low they don't want me doing any strength training just some short walks. I was getting a little tired of being stuck at home. Other than the blood counts tho the Heart is doing great and overall i feel good.

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@danab are the platelet problems and blood counts typical after heart transplants? We knew a woman who had a heart transplant when she was around 20. She is now well into her 50s, has two children and is thriving. I hope that you will soon be doing as well too.

I too have been away from my gym due to a fracture so I can sympathize with how you are feeling. At this point I have been back three times in the last week, so that’s a start.
JK

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@danab

Hi @rosemarya well im coming up on year 2 in Jan 2020. I am so blessed that the Lord has given me this new Heart and even with challenges due to viruses i am very happy with my life. I have had a challenging 6 months with my blood count issues but with the great staff of Doctors i believe we may have a good plan in place. My dreams to achieve an ability to do more hiking and camping is probably the area i most miss. Just when i think my workout plan is getting results i have to take a break due to low platelets, wbc, hemoglobin etc. Then the challenges of getting the insurance company to agree with the doctors can be stressful at times. But with prayer and some pleading we now have the ability to get the treatment on a regular basis that seems to help my blood counts that is IVIG on a monthly cycle. Just this week my platelets came up from 22 at the beginning of oct to 44 this past Tuesday. And my wbc is now back in the normal range. Hemoglobin went from 8.8 to 10.0 also. So the doctors let me start working out again. Easy at first but it felt good to get back in the gym for a 10 min workout plus about a mile walking. Which when my counts are low they don't want me doing any strength training just some short walks. I was getting a little tired of being stuck at home. Other than the blood counts tho the Heart is doing great and overall i feel good.

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Hi, @ danab, I to am a heart transplant patient and I am at 8 years and 9 moths post transplant and I to have problems with my hemoglobin and platelets right now my hemoglobin is stable but white white count is a little high right now but my red cell are finally back to the low normal range for me as I am battling an infection right now but my transplant team has had me on Vitron C to help keep my hemoglobin and red and white cells up where they are supposed to be I lost count of how many blood transfusions I have had because of getting sick and accidents and I still have a low blood count have dealt with low blood count since before my transplant i have been on the iron supplement. So I truly understand what you are going thru I to work out and walk when I'm feeling well enough to I work out at the YMCA here at home and walk also I'm not allowed to do any of the strength training machines for the upper body mainly do to having some injuries last year and am not strong enough for that yet but I do use the treadmill when I cannot get out in the community to walk and the Nustep, leg press and hip abduction machines my doctor's have cleared me for those am working in getting back up to my walking of 20 thousand to 30 thousand of steps a day but that's only if my body will let me as for my heart with everything I have been thru in the last y are and s half my heart is doing great and as of July my platelets and hemoglobin and red blood cells have stayed stable so I believe that eventually you can have the same results at least that's what I pray and hope for you is. Sorry this was so long
Glinda

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@danab

Hi @rosemarya well im coming up on year 2 in Jan 2020. I am so blessed that the Lord has given me this new Heart and even with challenges due to viruses i am very happy with my life. I have had a challenging 6 months with my blood count issues but with the great staff of Doctors i believe we may have a good plan in place. My dreams to achieve an ability to do more hiking and camping is probably the area i most miss. Just when i think my workout plan is getting results i have to take a break due to low platelets, wbc, hemoglobin etc. Then the challenges of getting the insurance company to agree with the doctors can be stressful at times. But with prayer and some pleading we now have the ability to get the treatment on a regular basis that seems to help my blood counts that is IVIG on a monthly cycle. Just this week my platelets came up from 22 at the beginning of oct to 44 this past Tuesday. And my wbc is now back in the normal range. Hemoglobin went from 8.8 to 10.0 also. So the doctors let me start working out again. Easy at first but it felt good to get back in the gym for a 10 min workout plus about a mile walking. Which when my counts are low they don't want me doing any strength training just some short walks. I was getting a little tired of being stuck at home. Other than the blood counts tho the Heart is doing great and overall i feel good.

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@danab, do you mind d if I ask what day in January of 2018 you had your transplant as I said before I am going on 9 years on the 20thof January

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@glinda

@danab, do you mind d if I ask what day in January of 2018 you had your transplant as I said before I am going on 9 years on the 20thof January

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January of 2011 I got my hear luckily just 2 days before my mother and two kids would have been planning my funeral so I was extremely lucky I had waited from 2005 to 2011 for my new heart am so glad your heart is doing great and so is me mine it even survived

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