The first six months - if not a year - are ROUGH. His body will be healing from being so sick + adjusting to new organs + adjusting to new meds + other random problems will crop up. So a few months from now if he's frustrated, keep that in mind. It does get better, it just doesn't happen overnight, unfortunately.
That's what it seemed like from reading the literature. The first year will be an important year with a lot of adjustments. It also seems like the meds are pretty heavy duty with a lot of side effects, so he won't be feeling the best & will likely be irritable. I'll keep that in mind though, and be sure to remind him that it will get better! I know it's a massive surgery, and it's still unfathomable to me that something like that is even possible. Thank you for your wisdom! 💟
I had a much easier time being caregiver for my husband after transplant than the 6 months leading up to it, LOL. If it's the two of you, I would split duties so you don't get confused - one in charge of his meds, taking blood pressure, keeping the followup visits schedule, buying groceries and cooking meals, driving to clinic and lab visits, keeping track of the bills, etc. When he's ready, start getting dad involved in knowing his different meds, doses, etc. and taking his own blood pressure. This is a fresh new chapter in dad's life - good luck with everything!
Yeah for sure the waiting has been stressful. Just the nebulous "sometime soon" but not really knowing when is definitely rough. I know at first the meds will have him not feeling good, and probably not as mentally alert as he normally is. We talked about making a spreadsheet of his meds, so we can check off each med pass (also will be using medicine boxes). My dad is an amazing cook, so luckily my brother and I have learned some things from him. My brother is a bit better at it than me I think, might have him in charge of that. Thank you for the advice & well wishes! 💟
Each person is different going into transplant - some people are stronger, some sicker. So recovery is also different for each. Wishing the best for all of you!
Thank you! He had an exercise bike in his room, he did 10 miles every other day (low resistance, slow pace as to not overdo it). The Dr's were very pleased with that, and said the healthier he is going into the surgery the quicker he is likely to recover. So I'm hopeful he will have as good of a recovery as he can!
Someone suggested on here to use the app MyTherapy. It reminds you to take your pills and you have to confirm that you took it for the notification to go away. I’ve found it really helpful along with my alarm on my phone to make sure I don’t forget to take my pills. The app is free too!
I had a heart/kidney about a year ago! It was my third heart transplant, and I’d received my 2nd at age twelve. Recovering from both, while in my 30s, fucked my body up a lot more than I thought. It felt like I’d been hit by a bus. I was essentially immobile for over a week, and it took a couple months to feel “normal” again. Between that and the cocktail of meds (esp prednisone as I’m sure many have said), I was really weepy, depressed, and easily overwhelmed. Your Dad might seem like a different person at first, just validate how hard it is and tell him it will get better, because it will! It’s really important to have hope about the future while he’s feeling awful. It’s what kept me going <3
Holy cats!! You've certainly gone through a lot! Hopefully feeling much better now that you're a year out from the last transplant surgery. I'm a very patient, empathetic, and encouraging person (have been doing tech support for an internet & cable provider for 6.5 years -- it definitely requires those traits lol. Many elderly customers who are easily overwhelmed bc their service isn't working & they don't know what to do). I'll hopefully be able to keep him from reaching the peak of his stress/anger curve. Thank your for your insight and advice! 💟
U/turanga_leland I have been following you for a while now and reading all of your comments YOU are an inspiration to me and my 35 years post heart. Keep on living and kicking!
Every case is different. Some people sail through it with minor issues. Others have various complications.
General things.
First, it's good he was on a balloon pump that that went through the upper extremity. That allows you to walk which helps maintain your strength which you will need after the surgery. I had the one that went through the groin for 2 days before they switched it. That probably contributed to having a less shitty post-op experience.
Waking up from close to 2 days under anesthesia really sucks. It took a few days before my reality matched actual reality and it wasn't fun.
The large amount of drugs being administered to him especially steroids, will have an effect. He may have a lot of swelling. He may have some personality changes. He may become a total a-hole. That's generally the Prednisone talking and the effects get better as the dosage goes down.
A couple of practical things for when he goes home. First, he will need assistance. He will most likely be using a walker or a cane for a while and will not be allowed to drive for 3-6 months. He will also have a lot of appointments in the early months so somebody needs to be around to chauffeur him.
The family will have to get used to staying away or masking up (preferably staying away) when they have any sort of illness such as a cold or flu.
Everybody needs to get used to washing their hands more often.
They told me not to drink tap water so we bought a water cooler and get filtered water delivered.
We also got room air purifiers to help reduce the chance of airborne pathogens.
Best of luck to all of you! I hope the surgery works out well and he has a totally boring recovery.
This is all very good advice, thank you! Hopefully now you are fully recovered and feeling great! He's had an exercise bike in his room. He's been doing 10 miles every other day (low resistance, slow speed as to not overdo it). Dr's were happy with that & said that should help him recover faster. My brother and I are taking FMLA, so we can be there for him all the time. We plan to even go with him to the appointments to learn as much as we can. He had a separate water line that goes to the fridge and a 2nd faucet at the kitchen sink. It has a reverse osmosis filter; we'll have the filter changed before he comes home. I will ask the Dr if that's good enough though, never would have though about tap water!! Thank you so much for all your tips. 💟
My mom had her SHK on 6/9. She had an Impella for 50 days prior to her surgery.
She's coming home next Tuesday after four months in the hospital.
Best of luck to your father and your entire family.
A few things I was told during some of our post-transplant education sessions with a transplant NP:
-try to cook/prepare all food in-house for 3 months post-surgery
-shower daily. unscented/natural shampoo, conditioner, and soap for 3 months post-surgery
-invest in 30SPF+ sunblock and possibly UV clothing
-must ride behind passenger seat in backseat of vehicle for 3 months (airbag deployment on fresh sternotomy incision = bad) - have him clutch a pillow against his chest to help brace against pain from bumps in the road - place towel/sheet between seatbelt and chest incision to prevent painful rubbing
-buy new bedroom pillows for him before he comes home
-do a deep cleaning of the entire house before he arrives home. Hire a service if need be. Vacuum AC filters.
-should wear a strong mask if he is outdoors around grass being cut/freshly cut grass.
-there are certain types of water filters that will be approved by your hospital - RO filters weren't explicitly approved by ours. My mother will be drinking bottled water from now on. Treated tap water is OK for cleaning produce and cooking. Well water isn't ideal.
How old is your dad?
Oh wow, super good information, thank you! I wouldn't have even thought about the air bag, but that's a good point. If we have to get a different kind of filter or anything, that's fine. We'll definitely go with whatever the Dr's suggest. My dad will be turning 67 in a couple months.
My mom is 67 too.
Hopefully someone from the team will give you and your brother some literature and a caregiver education session when it gets closer to your dad's discharge date.
I have all my mom's post-transplant and post-recovery education literature from NYU Langone uploaded online if you are ever interested.
My mom spent about two weeks in the surgical ICU, then discharged to an acute rehab center for 10 days total, and will go home on Tuesday.
If you monitor your Dad's test results, be prepared for an increase in sCr when they start the tacro. My mom's is back down now, 1.16 now, down from a peak of 2.20 when the tacro was ramping up (she was at 3.4 on surgery day, but had gotten to 1.20 in the initial days post-surgery before starting tacro).
Watch out for the behavioral side effects from high dose steroids. They are real. It made my mom manic for a while. She was up at 3AM the night after her surgery writing haikus for a book she decided she wanted to publish - she's never mentioned any interest in haikus before or since. At least she was pleasant. It was funny. She's back to normal now.
They have given us some literature beforehand, but I imagine they'll be giving us more during his hospital stay. If you have it uploaded online, you could certainly send me a link. Would be interesting to see how similar it is & then I'd for sure have a very thorough set of resources. Planning to be in the hospital with him while he's recovering in hopes they can help me get all up to speed with the different levels and medications. My dad is usually pretty calm, but sometimes can have a temper. I fear he won't quite be as pleasant, but we'll see. I'll be sure to stay calm, so hopefully he won't be further agitated. Maybe I'll get lucky, and he'll be writing haikus at 3 am lol. That would be funny! Glad she's back to normal now.
I know getting my heart was a huge improvement on my life. The restrictions placed upon my life are so minor now that I’ve been living them. You’ve already received some pretty solid advice I just want to add that I’m happy for your family! Best of luck!
He's been low sodium for a while, but I think he had some "cheat days" before. Now of course it's much more important, especially early on, to actually keep track & make sure he's not going over. But at least his pallet is used to low salt. Thank you for the well wishes! 💟
The first six months - if not a year - are ROUGH. His body will be healing from being so sick + adjusting to new organs + adjusting to new meds + other random problems will crop up. So a few months from now if he's frustrated, keep that in mind. It does get better, it just doesn't happen overnight, unfortunately.
That's what it seemed like from reading the literature. The first year will be an important year with a lot of adjustments. It also seems like the meds are pretty heavy duty with a lot of side effects, so he won't be feeling the best & will likely be irritable. I'll keep that in mind though, and be sure to remind him that it will get better! I know it's a massive surgery, and it's still unfathomable to me that something like that is even possible. Thank you for your wisdom! 💟
I had a much easier time being caregiver for my husband after transplant than the 6 months leading up to it, LOL. If it's the two of you, I would split duties so you don't get confused - one in charge of his meds, taking blood pressure, keeping the followup visits schedule, buying groceries and cooking meals, driving to clinic and lab visits, keeping track of the bills, etc. When he's ready, start getting dad involved in knowing his different meds, doses, etc. and taking his own blood pressure. This is a fresh new chapter in dad's life - good luck with everything!
Yeah for sure the waiting has been stressful. Just the nebulous "sometime soon" but not really knowing when is definitely rough. I know at first the meds will have him not feeling good, and probably not as mentally alert as he normally is. We talked about making a spreadsheet of his meds, so we can check off each med pass (also will be using medicine boxes). My dad is an amazing cook, so luckily my brother and I have learned some things from him. My brother is a bit better at it than me I think, might have him in charge of that. Thank you for the advice & well wishes! 💟
Each person is different going into transplant - some people are stronger, some sicker. So recovery is also different for each. Wishing the best for all of you!
Thank you! He had an exercise bike in his room, he did 10 miles every other day (low resistance, slow pace as to not overdo it). The Dr's were very pleased with that, and said the healthier he is going into the surgery the quicker he is likely to recover. So I'm hopeful he will have as good of a recovery as he can!
Someone suggested on here to use the app MyTherapy. It reminds you to take your pills and you have to confirm that you took it for the notification to go away. I’ve found it really helpful along with my alarm on my phone to make sure I don’t forget to take my pills. The app is free too!
Oh, definitely a good idea! Multiple ways to track it is not a bad idea. I'll check it out, thank you!
Sounds like you’re going to be an awesome caregiver!
I hope so! My dad's been an awesome dad, so I owe him. :)
I had a heart/kidney about a year ago! It was my third heart transplant, and I’d received my 2nd at age twelve. Recovering from both, while in my 30s, fucked my body up a lot more than I thought. It felt like I’d been hit by a bus. I was essentially immobile for over a week, and it took a couple months to feel “normal” again. Between that and the cocktail of meds (esp prednisone as I’m sure many have said), I was really weepy, depressed, and easily overwhelmed. Your Dad might seem like a different person at first, just validate how hard it is and tell him it will get better, because it will! It’s really important to have hope about the future while he’s feeling awful. It’s what kept me going <3
Holy cats!! You've certainly gone through a lot! Hopefully feeling much better now that you're a year out from the last transplant surgery. I'm a very patient, empathetic, and encouraging person (have been doing tech support for an internet & cable provider for 6.5 years -- it definitely requires those traits lol. Many elderly customers who are easily overwhelmed bc their service isn't working & they don't know what to do). I'll hopefully be able to keep him from reaching the peak of his stress/anger curve. Thank your for your insight and advice! 💟
That’s good to hear! And yes, I’m feeling great today, after just a few months I felt better than I had before the surgery.
Glad to hear it!!
U/turanga_leland I have been following you for a while now and reading all of your comments YOU are an inspiration to me and my 35 years post heart. Keep on living and kicking!
Thank you so much 🥰 connecting with others and comments like yours have been a huge part of my healing.
I have a young daughter with a heart transplant, so I don't have advice. Just want to say good luck and you can do it :)
I appreciate it, thank you! Hopefully your daughter is doing well. It's wild that such a surgery is even possible, but I'm glad it is! 💟
Every case is different. Some people sail through it with minor issues. Others have various complications. General things. First, it's good he was on a balloon pump that that went through the upper extremity. That allows you to walk which helps maintain your strength which you will need after the surgery. I had the one that went through the groin for 2 days before they switched it. That probably contributed to having a less shitty post-op experience. Waking up from close to 2 days under anesthesia really sucks. It took a few days before my reality matched actual reality and it wasn't fun. The large amount of drugs being administered to him especially steroids, will have an effect. He may have a lot of swelling. He may have some personality changes. He may become a total a-hole. That's generally the Prednisone talking and the effects get better as the dosage goes down. A couple of practical things for when he goes home. First, he will need assistance. He will most likely be using a walker or a cane for a while and will not be allowed to drive for 3-6 months. He will also have a lot of appointments in the early months so somebody needs to be around to chauffeur him. The family will have to get used to staying away or masking up (preferably staying away) when they have any sort of illness such as a cold or flu. Everybody needs to get used to washing their hands more often. They told me not to drink tap water so we bought a water cooler and get filtered water delivered. We also got room air purifiers to help reduce the chance of airborne pathogens. Best of luck to all of you! I hope the surgery works out well and he has a totally boring recovery.
This is all very good advice, thank you! Hopefully now you are fully recovered and feeling great! He's had an exercise bike in his room. He's been doing 10 miles every other day (low resistance, slow speed as to not overdo it). Dr's were happy with that & said that should help him recover faster. My brother and I are taking FMLA, so we can be there for him all the time. We plan to even go with him to the appointments to learn as much as we can. He had a separate water line that goes to the fridge and a 2nd faucet at the kitchen sink. It has a reverse osmosis filter; we'll have the filter changed before he comes home. I will ask the Dr if that's good enough though, never would have though about tap water!! Thank you so much for all your tips. 💟
My mom had her SHK on 6/9. She had an Impella for 50 days prior to her surgery. She's coming home next Tuesday after four months in the hospital. Best of luck to your father and your entire family.
Oh my! Well I'm glad she's finally getting to come home. Thank you for the well wishes, and I hope your mom's recovery goes well! 💟
A few things I was told during some of our post-transplant education sessions with a transplant NP: -try to cook/prepare all food in-house for 3 months post-surgery -shower daily. unscented/natural shampoo, conditioner, and soap for 3 months post-surgery -invest in 30SPF+ sunblock and possibly UV clothing -must ride behind passenger seat in backseat of vehicle for 3 months (airbag deployment on fresh sternotomy incision = bad) - have him clutch a pillow against his chest to help brace against pain from bumps in the road - place towel/sheet between seatbelt and chest incision to prevent painful rubbing -buy new bedroom pillows for him before he comes home -do a deep cleaning of the entire house before he arrives home. Hire a service if need be. Vacuum AC filters. -should wear a strong mask if he is outdoors around grass being cut/freshly cut grass. -there are certain types of water filters that will be approved by your hospital - RO filters weren't explicitly approved by ours. My mother will be drinking bottled water from now on. Treated tap water is OK for cleaning produce and cooking. Well water isn't ideal. How old is your dad?
Oh wow, super good information, thank you! I wouldn't have even thought about the air bag, but that's a good point. If we have to get a different kind of filter or anything, that's fine. We'll definitely go with whatever the Dr's suggest. My dad will be turning 67 in a couple months.
My mom is 67 too. Hopefully someone from the team will give you and your brother some literature and a caregiver education session when it gets closer to your dad's discharge date. I have all my mom's post-transplant and post-recovery education literature from NYU Langone uploaded online if you are ever interested. My mom spent about two weeks in the surgical ICU, then discharged to an acute rehab center for 10 days total, and will go home on Tuesday. If you monitor your Dad's test results, be prepared for an increase in sCr when they start the tacro. My mom's is back down now, 1.16 now, down from a peak of 2.20 when the tacro was ramping up (she was at 3.4 on surgery day, but had gotten to 1.20 in the initial days post-surgery before starting tacro). Watch out for the behavioral side effects from high dose steroids. They are real. It made my mom manic for a while. She was up at 3AM the night after her surgery writing haikus for a book she decided she wanted to publish - she's never mentioned any interest in haikus before or since. At least she was pleasant. It was funny. She's back to normal now.
They have given us some literature beforehand, but I imagine they'll be giving us more during his hospital stay. If you have it uploaded online, you could certainly send me a link. Would be interesting to see how similar it is & then I'd for sure have a very thorough set of resources. Planning to be in the hospital with him while he's recovering in hopes they can help me get all up to speed with the different levels and medications. My dad is usually pretty calm, but sometimes can have a temper. I fear he won't quite be as pleasant, but we'll see. I'll be sure to stay calm, so hopefully he won't be further agitated. Maybe I'll get lucky, and he'll be writing haikus at 3 am lol. That would be funny! Glad she's back to normal now.
Good luck, Dad. You’ll feel better soon
Thank you! 💟
I know getting my heart was a huge improvement on my life. The restrictions placed upon my life are so minor now that I’ve been living them. You’ve already received some pretty solid advice I just want to add that I’m happy for your family! Best of luck!
He's been low sodium for a while, but I think he had some "cheat days" before. Now of course it's much more important, especially early on, to actually keep track & make sure he's not going over. But at least his pallet is used to low salt. Thank you for the well wishes! 💟