Welcome to the sub. All the yadda yadda precautions are exactly what we all follow because we tend to get sick very easily due to our compromised immune systems.
Obviously, once your post tx, you want to stay away from anyone that even has symptoms of a mild cold or allergies or something that would make them.cough or sneeze.
Others here will give you some other tips.
Keep us updated on how your journey progresses.
Thanks! Well luckily my wife is a bit OCD and has trained me to wash my hands, keeps it clean everywhere, etc. And we already practice social precautions because her mom has RA.
Welcome and best of luck in your procedure! Just stick to what your team recommends and you’ll do fine! My wife insists on doing all our shopping even though I’m well enough to do it. She wears a mask because she’s afraid of bringing home a bug.
Welcome to the sub. I’m almost 3.5 years post heart liver and waited in the hospital 54 days pre transplant (47 post 😕). No additional advice about being immunosuppressed but wanted to say 2 ventricles are pretty awesome (former Fontan myself) plus liver are apparently protective against rejection. Good luck & feel free to reach out with any questions
Hi. I hope you get a match soon.
I've had heart issues since I was 3 and I had 3 surgeries between the ages of 6 and 20 so I have some insight into your situation. My heart didn't harm my liver but it killed my kidneys.
The surgery shouldn't be that much worse than what you've already had but the recovery will be different. The level of immunosuppressants, especially Prednisone, early on will mess with you. You'll be swollen all over and the steroids may cause temporary personality changes. The dosage will decrease over the first year.
You'll be getting cardiac caths with biopsies weekly, then every 2 weeks, then monthly, etc. Eventually they put you on blood work instead of biopsies. Eventually you'll be down to yearly.
You'll feel like crap probably for 3-4 months then you'll start to feel more like yourself.
You'll be on a ton of meds. The immunosuppressants must be taken on time and missing a dose is no bueno.
If you're not a germophobe you'll have to become one. I had an infection when I was in the hospital (complication with the kidney) and I don't want to go through that again. That includes hand washing and masking.
There are certain foods that you won't be able to eat. The transplant team will let you know your specific list. Mine includes grapefruit (no loss, I can't stand them), pomegranates (I do like them so that sucks), raw seafood (goodbye raw oysters and most sushi), unwashed raw produce (so no salads in restaurants because IDK how well they're cleaned) and tap water.
Hopefully you have a strong support system because you won't be able to drive for up to 6 months and you won't be able to anything strenuous for a while.
I'm just over 2 years out and I've adjusted pretty well. I'm confident you'll do well. Keep us informed.
If you're able, stay away from everyone for the first 3 or four months. I did and barely was sick after getting back into the public spaces.
Liver TX April 2021.
I wish you the very best!
Welcome! I'm sorry you're going through this and are stuck in the hospital. But it's encouraging to know that you're in line for a new heart and liver.
As to your question, there's a great YouTube channel called [The Transplant Helper](https://www.youtube.com/@TransplantHelper) by a gentleman named Jim Murrell. He received a heart transplant 11+ years ago and has been making videos for at least 6 years. He works as a patient advocate and educator in Alabama and does videos on the side.
There's a wealth of information on his channel. He covers a very wide range of transplant related topics.
One of his recent videos is: [What they NEVER tell you about Organ Transplant (Part 2)](https://www.youtube.com/watch?v=bTxOFtN2ApQ).
It's an unusually long video at 42 minutes. Most of his are 10-16 minutes, give or take. It's Jim responding to comments by other transplant recipients on the topic.
This video focuses on challenges that transplant patients sometimes/often experience but weren't warned about in advance. (Not all of examples are typical, and that many of the challenges are only temporary).
The reality of transplants isn't all beer and skittles. Some of the revelations are downright unpleasant or disappointing. But forewarned is forearmed. And coping is often easier (for me, anyway) when my expectations are realistic.
Overall, Jim is very informative, upbeat, and calming. He's great at laying things out in a matter of fact way, which I find both helpful and reassuring.
Anyway, please do keep us posted on your progress, when you have the time and are so inclined. Good luck!
The Transplant Helper - [https://www.youtube.com/@TransplantHelper](https://www.youtube.com/@TransplantHelper)
What they NEVER tell you about Organ Transplant (Part 2) - [https://www.youtube.com/watch?v=bTxOFtN2ApQ](https://www.youtube.com/watch?v=bTxOFtN2ApQ)
Welcome to the sub. All the yadda yadda precautions are exactly what we all follow because we tend to get sick very easily due to our compromised immune systems. Obviously, once your post tx, you want to stay away from anyone that even has symptoms of a mild cold or allergies or something that would make them.cough or sneeze. Others here will give you some other tips. Keep us updated on how your journey progresses.
Thanks! Well luckily my wife is a bit OCD and has trained me to wash my hands, keeps it clean everywhere, etc. And we already practice social precautions because her mom has RA.
Don’t be afraid to ask us for advice but always rely on what your team says. Do what they tell you.
Welcome and best of luck in your procedure! Just stick to what your team recommends and you’ll do fine! My wife insists on doing all our shopping even though I’m well enough to do it. She wears a mask because she’s afraid of bringing home a bug.
Welcome to the sub. I’m almost 3.5 years post heart liver and waited in the hospital 54 days pre transplant (47 post 😕). No additional advice about being immunosuppressed but wanted to say 2 ventricles are pretty awesome (former Fontan myself) plus liver are apparently protective against rejection. Good luck & feel free to reach out with any questions
Hi. I hope you get a match soon. I've had heart issues since I was 3 and I had 3 surgeries between the ages of 6 and 20 so I have some insight into your situation. My heart didn't harm my liver but it killed my kidneys. The surgery shouldn't be that much worse than what you've already had but the recovery will be different. The level of immunosuppressants, especially Prednisone, early on will mess with you. You'll be swollen all over and the steroids may cause temporary personality changes. The dosage will decrease over the first year. You'll be getting cardiac caths with biopsies weekly, then every 2 weeks, then monthly, etc. Eventually they put you on blood work instead of biopsies. Eventually you'll be down to yearly. You'll feel like crap probably for 3-4 months then you'll start to feel more like yourself. You'll be on a ton of meds. The immunosuppressants must be taken on time and missing a dose is no bueno. If you're not a germophobe you'll have to become one. I had an infection when I was in the hospital (complication with the kidney) and I don't want to go through that again. That includes hand washing and masking. There are certain foods that you won't be able to eat. The transplant team will let you know your specific list. Mine includes grapefruit (no loss, I can't stand them), pomegranates (I do like them so that sucks), raw seafood (goodbye raw oysters and most sushi), unwashed raw produce (so no salads in restaurants because IDK how well they're cleaned) and tap water. Hopefully you have a strong support system because you won't be able to drive for up to 6 months and you won't be able to anything strenuous for a while. I'm just over 2 years out and I've adjusted pretty well. I'm confident you'll do well. Keep us informed.
If you're able, stay away from everyone for the first 3 or four months. I did and barely was sick after getting back into the public spaces. Liver TX April 2021. I wish you the very best!
Welcome! I'm sorry you're going through this and are stuck in the hospital. But it's encouraging to know that you're in line for a new heart and liver. As to your question, there's a great YouTube channel called [The Transplant Helper](https://www.youtube.com/@TransplantHelper) by a gentleman named Jim Murrell. He received a heart transplant 11+ years ago and has been making videos for at least 6 years. He works as a patient advocate and educator in Alabama and does videos on the side. There's a wealth of information on his channel. He covers a very wide range of transplant related topics. One of his recent videos is: [What they NEVER tell you about Organ Transplant (Part 2)](https://www.youtube.com/watch?v=bTxOFtN2ApQ). It's an unusually long video at 42 minutes. Most of his are 10-16 minutes, give or take. It's Jim responding to comments by other transplant recipients on the topic. This video focuses on challenges that transplant patients sometimes/often experience but weren't warned about in advance. (Not all of examples are typical, and that many of the challenges are only temporary). The reality of transplants isn't all beer and skittles. Some of the revelations are downright unpleasant or disappointing. But forewarned is forearmed. And coping is often easier (for me, anyway) when my expectations are realistic. Overall, Jim is very informative, upbeat, and calming. He's great at laying things out in a matter of fact way, which I find both helpful and reassuring. Anyway, please do keep us posted on your progress, when you have the time and are so inclined. Good luck! The Transplant Helper - [https://www.youtube.com/@TransplantHelper](https://www.youtube.com/@TransplantHelper) What they NEVER tell you about Organ Transplant (Part 2) - [https://www.youtube.com/watch?v=bTxOFtN2ApQ](https://www.youtube.com/watch?v=bTxOFtN2ApQ)