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.

@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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@danab

@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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Good keep the attitude up I know all about getting viruses I usually get them once or twice a year as I have severe allergies and severe chronic ashtma but the year I was lucky if you want to say that no viruses but a month of a bacterial infection and am going on week 3 of antibiotics but this is my third antibiotic that I am on for the month as the first two didn't work and I haven't been able to go to the YMCA here except once since I got the infection have been to tired and worn out have done some walking but not for more then 15 minutes at a time then I have to stop I so can't wait to get back to the Y as I hate not exersing I can tell you as long as you keep working at exercising it will get better and you will get stronger and keep all the other stuff playing you under control and at Bay just keep listening to your doctors and yourself and if you can't exercise a whole lot right now even just walking to your car and back is exercise even a little bit helps trust me I know I wasn't able to walk lat year for 4 and a half months wasn't even allowed to move my legs do to my accident so as I say every little bit will help.
I will always be here any time you want or need to talk even if it's for a little encouragement I will be here just wanted to let you know
Glinda

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@glinda

Good keep the attitude up I know all about getting viruses I usually get them once or twice a year as I have severe allergies and severe chronic ashtma but the year I was lucky if you want to say that no viruses but a month of a bacterial infection and am going on week 3 of antibiotics but this is my third antibiotic that I am on for the month as the first two didn't work and I haven't been able to go to the YMCA here except once since I got the infection have been to tired and worn out have done some walking but not for more then 15 minutes at a time then I have to stop I so can't wait to get back to the Y as I hate not exersing I can tell you as long as you keep working at exercising it will get better and you will get stronger and keep all the other stuff playing you under control and at Bay just keep listening to your doctors and yourself and if you can't exercise a whole lot right now even just walking to your car and back is exercise even a little bit helps trust me I know I wasn't able to walk lat year for 4 and a half months wasn't even allowed to move my legs do to my accident so as I say every little bit will help.
I will always be here any time you want or need to talk even if it's for a little encouragement I will be here just wanted to let you know
Glinda

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Thanks Glinda

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@danab

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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I have been lucky when I usually get the chills it's do to my blood count being low as for a fever for me I only get that when I get a bacterial infection and I dehydrate which is the case for me right now not the dehydration but the fever from the bacterial infection but when I get the chills it scares me a lot as I had the chills all the way but to being told I needed a heart transplant to having the transplant what scares me the most isn't getting a fever it the chance of getting a virus like a cold as that was what destroyed my original heart was a cold that's what I worry about

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@danab

Thanks Glinda

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Your very welcome anytime

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@contentandwell

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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The need to give up driving and independence is something that we are all going to have to face someday if we are drivers. Shopping and convenience don't matter when safety of self and others is the focus. At 70, that is something that I have to start to be aware of.
However the implication in this FB post was that even young transpant recipients need to be aware of how our medications can affect our response time and seriously affect our driving.

Here is what happened to me several years ago. I was not able to pull into 1 of 3 in-a-row parking spaces. And then I was going to run a red light at an intersection, so my husband had me pull over so he could drive. Next day I called my coordinator and she and I discussed some other symptoms that I was having. She told to me lower my tacrolimus dose and to get my labs drawn along with a prograf kit. Sure enough, my numbers were too high. I guess that is why I encourage patients to call tneir transplant coordinator or team.

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I had my license suspended due to my lactulose medication. It was Nov 2016 and I had a few major HE episodes so it was deemed that I should not be on the road. I didn't have it renewed until the end of Aug this year, 2019, when they felt I was ready to get behind the wheel again. That was almost 9 months post transplant. It was tremendously inconvenient but they were right. Any hint of dizziness, loss of concentration or misjudgment and I would have had an accident. I'm glad now as I feel much safer with my driving.

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@gaylea1

I had my license suspended due to my lactulose medication. It was Nov 2016 and I had a few major HE episodes so it was deemed that I should not be on the road. I didn't have it renewed until the end of Aug this year, 2019, when they felt I was ready to get behind the wheel again. That was almost 9 months post transplant. It was tremendously inconvenient but they were right. Any hint of dizziness, loss of concentration or misjudgment and I would have had an accident. I'm glad now as I feel much safer with my driving.

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It is something to keep in mind im 60 this year and haven't had a concern except for the few months after transplant. But i do admit im see my eye dr every year and this year i suspect i will need regular glasses besides just for reading. I think my long distance eyesight has been different lately. Like my eyes get more tired quicker.

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@rosemarya

The need to give up driving and independence is something that we are all going to have to face someday if we are drivers. Shopping and convenience don't matter when safety of self and others is the focus. At 70, that is something that I have to start to be aware of.
However the implication in this FB post was that even young transpant recipients need to be aware of how our medications can affect our response time and seriously affect our driving.

Here is what happened to me several years ago. I was not able to pull into 1 of 3 in-a-row parking spaces. And then I was going to run a red light at an intersection, so my husband had me pull over so he could drive. Next day I called my coordinator and she and I discussed some other symptoms that I was having. She told to me lower my tacrolimus dose and to get my labs drawn along with a prograf kit. Sure enough, my numbers were too high. I guess that is why I encourage patients to call tneir transplant coordinator or team.

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So, @rosemarya you are O.K. driving now? That must have been scary. I feel so fortunate that even Pre-transplant I never had to stop driving. I knew not to even leave the house when I had an HE episode of any strength, even very mild ones. I think my experience was atypical because I could tell when I was getting one, and when I had one it was like I was an observer of my own irrational behavior.
JK

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@danab

It is something to keep in mind im 60 this year and haven't had a concern except for the few months after transplant. But i do admit im see my eye dr every year and this year i suspect i will need regular glasses besides just for reading. I think my long distance eyesight has been different lately. Like my eyes get more tired quicker.

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@danab. I noticed a huge difference in my vision right after turning 40, which I have heard is a common age for changes to start. I had cataracts and the surgery for that replaces the lens in your eye so your vision immediately improves, but the reading vision has continued to get worse. My husband had the most incredible distant vision but he too does not have the eyesight he used to have.

If not for the cataract surgery I wonder how my distant vision would be now.
JK

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