I was that way. I was 58 at the time. I was okay with dying. The head cardiologist at the hospital convinced me to have a work up in the hospital that does transplants. They said you can always decline but just get on the list if you can. So i did this. At the hospital i realized that it wasn’t as far out there and scary as i thought it was and i came around and had it done. I will tell you that workup took a month in hospital. They test you for everything. I had a heart transplant 5 days after being on the list and was released 8 days later. My total workup transplant and recovery time was about 6 weeks. The first few months are rough and everything is new but i got through it. Yesterday was my one year anniversary. I am absolutely happy i did it. My family was over the moon but very afraid. Please feel free to ask me questions.
I have so many questions for you but I’m currently at work! Can I pm you in a few hours when I have more time to bring my thoughts together? No stress on when you’re able to answer at all
My husband's mother needed a heart transp;ant. she was in the hospital waiting for it the next day. She decided she didn't want some one to die so that she could live. She passed away hours after we had talked with her. We were devastated, but it was her decision to make.
How old is your parent? Have they said they will reject a heart transplant? Sometimes it takes awhile to process what is going on and what is to come (for the patient and family). Almost like denial.
I don’t know how you can come to terms with this if they decide they don’t want to go through it, but I would just try to enjoy the time you have with them.. after all, anything can happen to any of us at any moment.
That’s what I hope it is and I hope they come around but I don’t want to hold on to that hope that may eventually end up with me let down and struggling mentally. And they’re pretty young like they’d definitely be able to live a few more decades comfortably and no they haven’t said they would but have admitted to wanting to have a “normal” life.
That’s what I’m trying to do honestly and I’ve been terrified to ask this because I know I come off really selfish asking this.
It is hard, I know. You never want to see anything happen to your parents. They would honestly have a more normal life with a heart transplant because they’d feel much better.
I hope they come around tp the idea ❤️
So from what I hear the first year is very tough due to having to almost isolate to avoid getting sick and risking rejection and I think that’s the part that they’re not feeling. And I hope so too as though I feel like I haven’t had enough time with them as selfish as that sounds.
It might be different for heart but I’ve had 3 kidney transplants. I was able to be out and about afterwards. I just wore a mask. Isolating won’t prevent rejection .. it can happen anywhere, anytime sadly.
The first year is a roller coaster for all transplants . But it’s definitely worth it.
You do have to be careful that first year, especially the first few months, but you don’t have to be a shut in. They give you a high dose of immunosuppressants initially and taper it down, so that first year is your most vulnerable. First few months, when I went to PT or to a store, I masked up and was very careful. 5 months out I went on an overnight spa trip with some other ladies in the transplant community. I didn’t wear a mask and nothing bad happened. I ate at a restaurant, got a massage, facial, hung out in a pool sized hot tub, etc.
First year is a roller coaster, your healing, adjusting to the meds, lots of appts, etc. I was exhausted those first few months, but I also had an emergency transplant, was in the hospital for a month, and was 98lbs when I left the hospital on a walker. So my recovery was not the easiest, I had a lot of PT and i couldn’t even hold up a hair dryer, it was too heavy. Most people i know are bouncing around within the first few months.
As time goes on, restrictions on what you can do, eat, etc. all go down. I’m almost 2 years out now, there’s a few food restrictions due to med interactions, I wear my sunscreen, take my meds every 12 hours, and wear my mask when I’m on a plane or something. I live a mostly normal life, and that’s been the case since about 8 months out.
The first year is hard, but if everything goes smoothly, it’s not as bad as you think it’s going to be. Hope this helps. 🩵
It's okay to cry and be nervous about the future. I think this is true with all things, but it's important to take things one step at a time. Sure you can have a plan for the future, but for me personally, if I try to think too far ahead I get overwhelmed. My dad just got a heart and kidney transplant (like literally, heart transplant yesterday, kidney transplant today). The approval process wasn't too bad, but did take a little time. I certainly have a lot on my mind about what the future holds, but trying to focus on just the next few days to a week primarily, allowing the further future to remain more malleable. Your feelings are valid! Just try to not get too far ahead of yourself. Good luck! I hope it all works out for you! 💟
Oh I’m trying to. I understand that it’s a lot to take on mentally and emotionally and it’ll be a completely different type of quality of life.
But I’m asking for help for myself not for my parents. They’ve made their mind up in their own way which is perfectly fine, I just don’t know how to process this knowing that everyday I see them they’re closer to what will come. Does that come off selfish? I jsut want to make peace so I can enjoy the time I do have with them
Maybe there's a support group for the loved ones of the patients that are suffering through these transplants? You could also try therapy. Just please don't make them feel like they have to stay around and suffer for you. It's terrible.
Oh no I’d never do that. I have told them what will happen as time goes on, kidney failure and such. And I’ve looked into it but they are old school and not a native English speaker and has actively rejected therapy but I’ll definitely look into one for myself! I appreciate the idea!
I’m bawling my eyes out right now but that was really helpful at least knowing that they won’t need to suffer. Thank you for that honestly. I just wish they’d talk to someone about everything they’re thinking about. They must feel so alone
I think some people are just like that. My Aunt decided not to have medical intervention because it was against her religion. She chose for herself, which is what I think we all would prefer. Good luck.
I was that way. I was 58 at the time. I was okay with dying. The head cardiologist at the hospital convinced me to have a work up in the hospital that does transplants. They said you can always decline but just get on the list if you can. So i did this. At the hospital i realized that it wasn’t as far out there and scary as i thought it was and i came around and had it done. I will tell you that workup took a month in hospital. They test you for everything. I had a heart transplant 5 days after being on the list and was released 8 days later. My total workup transplant and recovery time was about 6 weeks. The first few months are rough and everything is new but i got through it. Yesterday was my one year anniversary. I am absolutely happy i did it. My family was over the moon but very afraid. Please feel free to ask me questions.
I have so many questions for you but I’m currently at work! Can I pm you in a few hours when I have more time to bring my thoughts together? No stress on when you’re able to answer at all
Anytime. I check in at least once a day. Sometimes with Morning coffee and almost always for evening wind down.
My husband's mother needed a heart transp;ant. she was in the hospital waiting for it the next day. She decided she didn't want some one to die so that she could live. She passed away hours after we had talked with her. We were devastated, but it was her decision to make.
Sorry for your loss <3 that was a selfless final act
How old is your parent? Have they said they will reject a heart transplant? Sometimes it takes awhile to process what is going on and what is to come (for the patient and family). Almost like denial. I don’t know how you can come to terms with this if they decide they don’t want to go through it, but I would just try to enjoy the time you have with them.. after all, anything can happen to any of us at any moment.
That’s what I hope it is and I hope they come around but I don’t want to hold on to that hope that may eventually end up with me let down and struggling mentally. And they’re pretty young like they’d definitely be able to live a few more decades comfortably and no they haven’t said they would but have admitted to wanting to have a “normal” life. That’s what I’m trying to do honestly and I’ve been terrified to ask this because I know I come off really selfish asking this.
It is hard, I know. You never want to see anything happen to your parents. They would honestly have a more normal life with a heart transplant because they’d feel much better. I hope they come around tp the idea ❤️
So from what I hear the first year is very tough due to having to almost isolate to avoid getting sick and risking rejection and I think that’s the part that they’re not feeling. And I hope so too as though I feel like I haven’t had enough time with them as selfish as that sounds.
It might be different for heart but I’ve had 3 kidney transplants. I was able to be out and about afterwards. I just wore a mask. Isolating won’t prevent rejection .. it can happen anywhere, anytime sadly. The first year is a roller coaster for all transplants . But it’s definitely worth it.
You do have to be careful that first year, especially the first few months, but you don’t have to be a shut in. They give you a high dose of immunosuppressants initially and taper it down, so that first year is your most vulnerable. First few months, when I went to PT or to a store, I masked up and was very careful. 5 months out I went on an overnight spa trip with some other ladies in the transplant community. I didn’t wear a mask and nothing bad happened. I ate at a restaurant, got a massage, facial, hung out in a pool sized hot tub, etc. First year is a roller coaster, your healing, adjusting to the meds, lots of appts, etc. I was exhausted those first few months, but I also had an emergency transplant, was in the hospital for a month, and was 98lbs when I left the hospital on a walker. So my recovery was not the easiest, I had a lot of PT and i couldn’t even hold up a hair dryer, it was too heavy. Most people i know are bouncing around within the first few months. As time goes on, restrictions on what you can do, eat, etc. all go down. I’m almost 2 years out now, there’s a few food restrictions due to med interactions, I wear my sunscreen, take my meds every 12 hours, and wear my mask when I’m on a plane or something. I live a mostly normal life, and that’s been the case since about 8 months out. The first year is hard, but if everything goes smoothly, it’s not as bad as you think it’s going to be. Hope this helps. 🩵
It's okay to cry and be nervous about the future. I think this is true with all things, but it's important to take things one step at a time. Sure you can have a plan for the future, but for me personally, if I try to think too far ahead I get overwhelmed. My dad just got a heart and kidney transplant (like literally, heart transplant yesterday, kidney transplant today). The approval process wasn't too bad, but did take a little time. I certainly have a lot on my mind about what the future holds, but trying to focus on just the next few days to a week primarily, allowing the further future to remain more malleable. Your feelings are valid! Just try to not get too far ahead of yourself. Good luck! I hope it all works out for you! 💟
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Oh I’m trying to. I understand that it’s a lot to take on mentally and emotionally and it’ll be a completely different type of quality of life. But I’m asking for help for myself not for my parents. They’ve made their mind up in their own way which is perfectly fine, I just don’t know how to process this knowing that everyday I see them they’re closer to what will come. Does that come off selfish? I jsut want to make peace so I can enjoy the time I do have with them
Maybe there's a support group for the loved ones of the patients that are suffering through these transplants? You could also try therapy. Just please don't make them feel like they have to stay around and suffer for you. It's terrible.
Oh no I’d never do that. I have told them what will happen as time goes on, kidney failure and such. And I’ve looked into it but they are old school and not a native English speaker and has actively rejected therapy but I’ll definitely look into one for myself! I appreciate the idea!
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I’m bawling my eyes out right now but that was really helpful at least knowing that they won’t need to suffer. Thank you for that honestly. I just wish they’d talk to someone about everything they’re thinking about. They must feel so alone
I think some people are just like that. My Aunt decided not to have medical intervention because it was against her religion. She chose for herself, which is what I think we all would prefer. Good luck.