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.

@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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@glinda

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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Sorry my phone is not working right as I was saying my heart even survived being hit by a car last February and I was a pedestrian at the time
Glinda

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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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No problem the 5th was my day

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@contentandwell

@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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Hi contentandwell I can't say if it is normal for every heart transplant patient I do know that I had the same problem for years that danab has but now I am stable I never miss my iron either
glinda

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@danab

No problem the 5th was my day

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@ danab my I ask one other question are you able to tell when you iron and blood count and hemoglobin is low? I myself know when it is as I get extremely tired and I'm always freezing. I hope the question is not to personal
Thanks glinda

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@contentandwell @glinda I don't really know for sure JK. In my case it seems i catch viruses easy and right now i have 3 basically hounding me. They are CMV from my donor heart, Parvo B19 which i just caught and one in my lungs that is a type of pneumonia called Pneumocystis pneumonia. So now i get 2 monthly treatments IVIG to keep the viruses surpressed and a inhalation treatment for the pneumonia. The funny thing is i feel pretty good except i knotice when my hemoglobin gets really low like 6 i get out of breath easy but that one has been in the 8-10 range lately so i feel like i can do more that what the drs will let me. Thanks Glinda for your words of support i just keep taking each day as it comes Lord willing he is in my corner also and enjoy the good days trying not to let the bad days get me down.

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@glinda

@ danab my I ask one other question are you able to tell when you iron and blood count and hemoglobin is low? I myself know when it is as I get extremely tired and I'm always freezing. I hope the question is not to personal
Thanks glinda

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On the hemoglobin i can tell when its lower than 7 i get out of breath easier climbing the stairs in my house. The others i can't tell for sure. With me tho when i get the chills its usually due to a fever and if it last too long its back to the hospital to find out why. I had cdiff in june and spent 5 weeks in the hosp. Thats when they found the lung virus. It took a scope exam into my lungs to find that one.

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