Heart-Lung Transplant Journey

Posted by ExWife @bcrandall, Nov 3, 2020

We are supporting a heart and double lung transplant family member. The transplant happened at Mayo in October, so we are looking for insights and support as we go through this journey. Due to covid-19, only one family member is allowed to visit, so a lot is falling on his shoulders.

We'd welcome insights from people who've gone through the heart and/or lung transplant journey. What to expect in the early days in the PCU, and duirng the 3 month in-town portion of the recovery? What do you wish someone had told you, either as the patient or the care-giver? Are there tips for keeping positive during the ups and downs? What are some things you did that helped make sense of all the information?

Hi @bcrandall and @djcrandall, welcome. Allow me to bring in some fellow members who can offer tips and support as you prepare for your journey in getting a heart and lung transplant. Meet fellow heart transplant recipients and caregivers @danab @estrada53 @scottij @glinda @lupedelarosa12 @brenwhite @dennisprater @amynewheart @fatherscaregiver @chugly11. And meet fellow lung transplant recipients and caregivers @trussgirl @abmac @wreath @salemke1952 @funk8nguy

You ask some great questions and I look forward to reading the responses from members how have "been there."

@bcrandall and @djcrandall, while we wait for fellow members to chime in, why don't you tell us a bit more about your transplant experience so far. You said the double heart and lung transplant took place in October this year at Mayo. Congrats! How is the recovery going so far? Are you both caregivers to the recipient? What's your biggest challenges at the moment?

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@bcrandall
Hello! As stated by Colleen you asked some good questions.

I just celebrated my 10 months with a new heart by toasting my donor with a Gatorade.

What do I wish someone had told me (or that I had listened to maybe)? My ejection fraction (EF) was down to 9% prior to the transplant. I had convinced myself that I was doing okay and almost immediately after the transplant I felt absolutely amazing. It was the first time in a long time that I could feel my heart beating or hear blood rushing through your ears. I had gone from a heart barely keeping me alive to one beating at 65% EF. I wanted to get up and slay dragons so my caregiver had the unenviable task of slowing me down. .

Tips for keeping positive: I actually came up with a top ten list of Attitudes and Actions and have listed the attitudes below
1. Ownership. You (the recipient) and you alone are responsible for your recovery. You must be an active participant in your care and not a passive subject. The doctors, nurses, medications, technology, and capability are resources available to you. Ask questions so that you understand what is happening, why it is happening, what your responsibility is; and so on. Be involved in packing your pills for the week, laying them out daily and reciting what you are taking using the formal and informal names, how much, and why. Take charge!
2. Trust. Trust those around you particularly your caregiver and medical team but do not abdicate your responsibility for your recovery. See #1. Be confident in their competence. Communicate your physical and emotional state regularly so that those who are there to assist you can bring their expertise. You do not want them guessing at your condition. Blood tests and X-rays are only part of the equation. Ask your team “why” often. It will fuel your confidence in the prescribed course of action. When you have a “why” you can handle any “what”.
3. Gratitude. Express gratitude to everyone. You cannot return the gift of your donor, but you can pay it forward. You are here to help others. While you are responsible for your care, you must not become self-centered. Get outside of yourself and focus a little energy on others. Contact all the people that prayed, contacted, or called you prior to your surgery and have a heartfelt conversation with them. Tell them, thank you.
4. Choice. No matter how you feel today, how poorly you slept the night before, each day is a good day. Some days are just better than others. You no longer have your previous heart (and lung) condition. All of that is gone. You have a new heart (and lung and it is your heart (and lung). Refer to them as such. It is not the donor’s heart and lung. It is your heart and lung. I like to say, “It was not my heart, but it is now, and I am giving it the best home I can.”
5.No whining. Emotion is a very real issue but there is a huge difference between crying about a lack of progress and doing something about a lack of progress. Some people value the group sessions to get “it” off their chest. Others find time with the Cardiac Team Psychiatrist valuable as you learn more about yourself. In any case, this is an emotional roller coaster. Do not avoid it. Ride it so that you understand what and why you are feeling the way you do. In the end realize that however you are feeling, you can choose to feel and act differently.

There will be lots of slight physical challenges driven by medications, simple recovery, and so on. My attitude toward them is I am alive to complain about them. The alternative is much worse

What are some things you did that helped make sense of all the information?.
Treatment at Mayo is far different from any other organization at which I have had medical care. If you come prepared with good questions, the medical team will engage you in discussion. I go over my labs and ping the team with questions. When I am directed to to change a prescription dosage I ask (and now my team is used to it) what led you to make this judgement and what can I expect? In short, ask ask ask and at Mayo you will receive.

A caution on the Connect.Mayo site: Some people ask questions like "I am thinking of stopping my tacrolimus, what does the group think?" Come to us for emotional support. Go to your medical team for professional medical advice.

Good luck (oh, and my wife is still having a devil of a time holding me back.)
Best always,
s!

REPLY
@scottij

@bcrandall
Hello! As stated by Colleen you asked some good questions.

I just celebrated my 10 months with a new heart by toasting my donor with a Gatorade.

What do I wish someone had told me (or that I had listened to maybe)? My ejection fraction (EF) was down to 9% prior to the transplant. I had convinced myself that I was doing okay and almost immediately after the transplant I felt absolutely amazing. It was the first time in a long time that I could feel my heart beating or hear blood rushing through your ears. I had gone from a heart barely keeping me alive to one beating at 65% EF. I wanted to get up and slay dragons so my caregiver had the unenviable task of slowing me down. .

Tips for keeping positive: I actually came up with a top ten list of Attitudes and Actions and have listed the attitudes below
1. Ownership. You (the recipient) and you alone are responsible for your recovery. You must be an active participant in your care and not a passive subject. The doctors, nurses, medications, technology, and capability are resources available to you. Ask questions so that you understand what is happening, why it is happening, what your responsibility is; and so on. Be involved in packing your pills for the week, laying them out daily and reciting what you are taking using the formal and informal names, how much, and why. Take charge!
2. Trust. Trust those around you particularly your caregiver and medical team but do not abdicate your responsibility for your recovery. See #1. Be confident in their competence. Communicate your physical and emotional state regularly so that those who are there to assist you can bring their expertise. You do not want them guessing at your condition. Blood tests and X-rays are only part of the equation. Ask your team “why” often. It will fuel your confidence in the prescribed course of action. When you have a “why” you can handle any “what”.
3. Gratitude. Express gratitude to everyone. You cannot return the gift of your donor, but you can pay it forward. You are here to help others. While you are responsible for your care, you must not become self-centered. Get outside of yourself and focus a little energy on others. Contact all the people that prayed, contacted, or called you prior to your surgery and have a heartfelt conversation with them. Tell them, thank you.
4. Choice. No matter how you feel today, how poorly you slept the night before, each day is a good day. Some days are just better than others. You no longer have your previous heart (and lung) condition. All of that is gone. You have a new heart (and lung and it is your heart (and lung). Refer to them as such. It is not the donor’s heart and lung. It is your heart and lung. I like to say, “It was not my heart, but it is now, and I am giving it the best home I can.”
5.No whining. Emotion is a very real issue but there is a huge difference between crying about a lack of progress and doing something about a lack of progress. Some people value the group sessions to get “it” off their chest. Others find time with the Cardiac Team Psychiatrist valuable as you learn more about yourself. In any case, this is an emotional roller coaster. Do not avoid it. Ride it so that you understand what and why you are feeling the way you do. In the end realize that however you are feeling, you can choose to feel and act differently.

There will be lots of slight physical challenges driven by medications, simple recovery, and so on. My attitude toward them is I am alive to complain about them. The alternative is much worse

What are some things you did that helped make sense of all the information?.
Treatment at Mayo is far different from any other organization at which I have had medical care. If you come prepared with good questions, the medical team will engage you in discussion. I go over my labs and ping the team with questions. When I am directed to to change a prescription dosage I ask (and now my team is used to it) what led you to make this judgement and what can I expect? In short, ask ask ask and at Mayo you will receive.

A caution on the Connect.Mayo site: Some people ask questions like "I am thinking of stopping my tacrolimus, what does the group think?" Come to us for emotional support. Go to your medical team for professional medical advice.

Good luck (oh, and my wife is still having a devil of a time holding me back.)
Best always,
s!

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This is amazing! I wish it could be printed on every conversation, and be the first page on the Mayo “bible”. Thank you so much!

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So moving and honest. Thanks for sharing

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@tasher3433

This is amazing! I wish it could be printed on every conversation, and be the first page on the Mayo “bible”. Thank you so much!

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Grazie!

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@jstoll1247

So moving and honest. Thanks for sharing

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Merci

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@bcrandall, @djcrandall
I am responding as an organ recipient, not a caregiver. In 2009 I received a liver and kidney transplant. While recovering in the hospital, my husband (caregiver) received the information and learned about what to expect and how to care for me and guide me when needed. So I think that your son, the caregiver who is at the hospital, will be a wealth of information for your loved ones immediate needs.
After your ex-husband/father is out of hospital and living nearby, he will have many follow ups with the transplant team as he learns how to proceed to living his new normal. Will any one of you be able to accompany dad to any of his appointments? Is so, be sure to listen, take notes, and share with those who need to know.
Please, please, please- learn about what you need to do to protect the patient form germs and infections. He is going to be immunocompromised and can easily catch any bug that is out there. Be proactive to wash hands, carefully prepare food, stay away if not feeling well…Do not make him remind you.
One of the sweetest things my husband did for me after we returned to our home, was to block off 3 hours (noon – 3pm) each day where I could sleep uninterrupted. No visitors, no phone calls, just quiet time for me. Your loved one might benefit from some uninterrupted alone time after the business of his recovery and endless interruptions.

@scottij, What did your caregiver do that helped you most in the early weeks of your recovery?

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@bcrandall and @djcrandall Hi again and welcome dj so glad your both here on connect. Some advise i would give both paient and caregivers is to be paient with each other. Some of the things i remember most were how much stress can develop over little things. Of course myself was dealing with the pain and trying to always have the awareness to either clutch the pillow or I had a new device they were just starting to use it was a strap-type item you could push 2 handles together to put the pressure on your chest. It worked well and it was always there for a quick grab. The pain was also an ongoing thing if i waited to long to get the meds going i would have to deal with the pain usually for about 45 minutes before it would kick in. I also was getting concerned that i may be getting hooked on oxycodone so i tried to back off and alternate with Tylenol but if i didn't take it regularly the pain would get a.little intense.
The other thing that really botherd me was the lack of good-tasting food. The meds really caused a problem there and i know it bothered my wife to make a nice dish and me not like it. Some of my favorite foods just tasted bad. And some even made me nauseous it seemed mostly meats and salads were the worst. I could handle se soft food like mashed potatoes and podding well. Even eggs were not easy to eat it was weird the things that i loved so much now not desirable any more. Ot did pass and i think it was mostly the prednisone which is rather funny simce they warned me it.would increase my appetite but.for.me.it.did the opposite.

Now mine was in Jan 2018 so covid was not an issue but my wife was adamite to maintain a clean environment especially at. the hotel we stayed at we would not do maid service except to get changes of bedding and towels.
One other thing that i remember well was how weak i was. Just taking a shower would get me really.tired and even things like putting my socks on was a chore. But its important that he does as much as possible and being my wife was a retired nurse was actually a blessing. She was used to caring for the physically challenged and knew how importatant it was to push to get better. I remember one evening especially how you can go to far. My wife was at the store getting some supplies and i really wanted to get some things done on the computer. It was in a suitcase on the floor and not thinking i kneeled down to get it. Well i could not get myself back up and luckily i was near a closet and used a low bar you hang clothes on to pull myself up. Things that were no problem even a few weeks ago were difficult. Realize in my case i was hospitalized for about 6 weeks prior to my transplant and had loss a lot of muscle mass. Super important to get to physical therapy as soon as the Doctors ok it. Well there a bit of the things i remember. Everyone is different tho so be ready to take life a little different for now. By the way i now almost 3nyears later walk on avg 4 miles a day and can do more than i could before the transplant. Eat right and get plenty of exercise and the skys the limit. Please keep us updated and as he feels up to it I would love to chat more on the little things.
Dana

REPLY
@danab

@bcrandall and @djcrandall Hi again and welcome dj so glad your both here on connect. Some advise i would give both paient and caregivers is to be paient with each other. Some of the things i remember most were how much stress can develop over little things. Of course myself was dealing with the pain and trying to always have the awareness to either clutch the pillow or I had a new device they were just starting to use it was a strap-type item you could push 2 handles together to put the pressure on your chest. It worked well and it was always there for a quick grab. The pain was also an ongoing thing if i waited to long to get the meds going i would have to deal with the pain usually for about 45 minutes before it would kick in. I also was getting concerned that i may be getting hooked on oxycodone so i tried to back off and alternate with Tylenol but if i didn't take it regularly the pain would get a.little intense.
The other thing that really botherd me was the lack of good-tasting food. The meds really caused a problem there and i know it bothered my wife to make a nice dish and me not like it. Some of my favorite foods just tasted bad. And some even made me nauseous it seemed mostly meats and salads were the worst. I could handle se soft food like mashed potatoes and podding well. Even eggs were not easy to eat it was weird the things that i loved so much now not desirable any more. Ot did pass and i think it was mostly the prednisone which is rather funny simce they warned me it.would increase my appetite but.for.me.it.did the opposite.

Now mine was in Jan 2018 so covid was not an issue but my wife was adamite to maintain a clean environment especially at. the hotel we stayed at we would not do maid service except to get changes of bedding and towels.
One other thing that i remember well was how weak i was. Just taking a shower would get me really.tired and even things like putting my socks on was a chore. But its important that he does as much as possible and being my wife was a retired nurse was actually a blessing. She was used to caring for the physically challenged and knew how importatant it was to push to get better. I remember one evening especially how you can go to far. My wife was at the store getting some supplies and i really wanted to get some things done on the computer. It was in a suitcase on the floor and not thinking i kneeled down to get it. Well i could not get myself back up and luckily i was near a closet and used a low bar you hang clothes on to pull myself up. Things that were no problem even a few weeks ago were difficult. Realize in my case i was hospitalized for about 6 weeks prior to my transplant and had loss a lot of muscle mass. Super important to get to physical therapy as soon as the Doctors ok it. Well there a bit of the things i remember. Everyone is different tho so be ready to take life a little different for now. By the way i now almost 3nyears later walk on avg 4 miles a day and can do more than i could before the transplant. Eat right and get plenty of exercise and the skys the limit. Please keep us updated and as he feels up to it I would love to chat more on the little things.
Dana

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Thank you for this wonderful insight!

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@bcrandall, @djcrandall, I am thinking about you. I hope your loved one is having an uneventful recovery.
What about you? How are you getting along with all of this? How can we help you thru this phase of recovery?

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