What to Expect as a Transplant Caregiver

Jan 21, 2020 | Kristin Eggebraaten | @keggebraaten | Comments (56)

A caregiver can be many things. For transplant patients, the caregiver can be the difference between a successful transplant and a failed organ. Most transplant centers require patients to have a caregiver at all times throughout the process both pre- and post-transplant. Most centers also provide helpful tips and even printed education materials so caregivers know what to expect.2020-01-21 Caregiver Blog

Our discussion group members consist of patients, donors, caregivers or loved ones. Recently, they talked about the role of caregivers and some of the things that they didn’t expect to happen when they took on that role.

Here is a list of 5 things that didn’t always go according to the pre-printed plan of what to expect.

Not enough time in the day.

In a perfect world, we would have time to care for our loved one, work outside the home, care for our children, clean, do the shopping, exercise, and cook healthy meals. Every doctor and transplant team member will tell you to remember to care for yourself so you can be there for others. But how can you fit it all in? The honest answer – sometimes you won’t.

You have to try to be ok with letting stuff go. Don’t clean the house every week like you used to, do it every other week. Grocery shop online while you are waiting for appointments with your loved one and pick it up on the way home. Maybe it’s time to try one of those healthy meal delivery services so you don’t have to cook a couple nights a week. You could have the pharmacy deliver medications if that’s an option in your area.

Most importantly, don’t be afraid to ask for help. This is very hard for some of us, but it’s often necessary when you are trying to do more than is physically possible. People are willing to help, but sometimes they need to be asked. Don’t be afraid to reach out to other family and friends to see if they have any spare time or resources to assist you or the patient.

Know the worst case scenario – even if you never have to experience it.

Transplant is successful most of the time, and patients go on to recover and live a great life. But not everything goes our way 100% of the time. There are ups and downs to recovery from major surgery. Not everyone gets better overnight and not every patient fits the mold that the doctors hope they will fit. People change, diseases relapse, the unexpected happens, and we need to be prepared.

After learning what great things can come from a transplant and how recovery should go (and probably will) ask your transplant team about the worst case scenario. Sometimes our loved ones aren’t happy with their outcome. How will this affect you if the person you are caring for is negative and wish they never would have gotten this new organ? Sometimes patients go through depression – they can’t do what they thought they could and are recovering slowly, or they are sad that someone had to die to give them their new chance at life.

All of these are rare circumstances, but they are possible, and you should be prepared for a less than optimal outcome after transplant. Knowing what could come is the first step in learning what to do to help.

Don’t assume the patient needs you 24/7.

We have all experienced someone who tries to help too much. Remember the last time you just wanted to be alone? Patients who are doing well after transplant may not want you around all the time. Have honest conversations with your recipient so you understand how much help they want from you. Don’t assume they need you all day every day, because you might be doing more work and causing more stress than you or the patient needs.

When you are healthy and active, it can be frustrating when the recipient is not.

Especially in situations when the caregiver is also the spouse, it can be frustrating for both people when there is a difference in activity level. If you as a caregiver want to go for a run, but the recipient isn’t able to even take a long walk, both of you can be frustrated. Don’t give up on your plans. This situation can be helped by the bullet above – don’t assume the patient needs you 24/7. Most of the time, you could go for your run and take a short walk with the patient when you return. Or find an activity that both of you can do together. Most physicians want transplant recipients to be active when they can, so this plan can benefit you both.

Consult your transplant center for help ANY TIME.

Transplant teams have nurses and social workers who want to assist you with caregiving challenges. Don’t let the job of caring for a loved one become a burden because they don’t fit the mold of a model patient. Contact your patient’s care team for assistance, advice, or to share changes in the patient’s recovery. Some of the changes in personality, ambition, or abilities might be related to their medication or their organ transplant and should be discussed with their care team. At the transplant center, we also care deeply about the caregivers. We want our patients to do well, and we want their friends and family to be able to assist them without transplant being a burden on their lives. Reach out and get help when you need it.

Finally, we want to thank the patients and caregivers. Without feedback from our discussion group, our patients and their families, we wouldn’t be able to provide the education and help our patients need. Thank you especially to our discussion group. We don’t know if they know it, but they help many more people than they realized each day. If you haven’t already, be sure to take a look at the discussions and participate if you can. You won’t regret it and may even be able to help others understand transplant and recovery better.

If you are a caregiver, were you given enough of the “real” information about what to expect?

HELPFUL LINKS

@actsoflight

Am I correct in believing that the patient has to stay nearby the hospital for 2 weeks after being discharged from the hospital? As a side note, the patient's home is 4 hours away from the hospital he would be potentially using.

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@actsoflight, I would like to share some additional information about Heart Transplant from Mayo Clinic's Patient Care and Health information > tests and procedures. This is written for the patient, however, any loved one or caregiver will gain a deeper understanding of the surgery and the after procedures possibilities.
https://www.mayoclinic.org/tests-procedures/heart-transplant/about/pac-20384750

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@fatherscaregiver

@actsoflight, I am my dad's primary care giver. I only lived about 5 miles from him when we received his transplant. We had help from close friends and family initially. If I remember correctly my dad was in the hospital for about a week after his transplant. My aunt (lives out of town) came to stay with my dad for the first two weeks after discharge. She was able to go the hospital with me to review all the discharge, post op care with me. Close friends (also live out of town) stayed the following two weeks. My sister (lives out of town) stayed for the fifth week. During this period I was at my dad's house daily, taking care of meds, groceries, cleaning, doctors appointments, etc. My son (20 years old at the time) moved in with my dad after my sister left. This provided that somebody would be with him almost all of the time. My son eventually moved out after two years and my dad lived by himself for two years. My dad was older when he received his transplant and his care has been extensive. He was just diagnosed with Parkinson's however the symptoms started to appear not long after transplant. This significantly delayed his recovering and took several years and doctors to finally diagnose. His transplant was/is a success, unfortunately other problems, illness can occur. My husband, son and I have adjusted our lives significantly to care for him over the past four years. I saw him pretty much everyday and definitely spoke to him daily. This summer we had to move him to an assisted living facility. His Parkinson's continues to progress and his falls were becoming too frequent.
Everybody recovers differently. For my dad there was never really a full recovery but that is because of additional health problems that were not anticipated. Is there are additional friends and family that can help, take a week or two each? It is difficult to say your friend will only need you 6-8 weeks, 6 months or possibly longer.

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Thus far, he has no support. I live in NY (Manhattan) and he lives in southern Mississippi. So, I'm of no use except for the research I've been doing. In fact, I found out just last night that his insurance only allows heart transplants 'in network' and the closest hospital to him is in the state of Alabama in Birmingham (3.52 hours away from where he lives). My friend had no idea until I told him this last night. From everything that I've been reading, a heart transplant patient should have at least 2 caregivers………a main caregiver with a rotation caregiver for when the main caregiver needs to leave for what ever reason. I'm thinking now that he probably will need 3 caregivers standing by just in case and all 3 need to completely commit to this endeavor.

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@rosemarya

@actsoflight, I would like to share some additional information about Heart Transplant from Mayo Clinic's Patient Care and Health information > tests and procedures. This is written for the patient, however, any loved one or caregiver will gain a deeper understanding of the surgery and the after procedures possibilities.
https://www.mayoclinic.org/tests-procedures/heart-transplant/about/pac-20384750

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@ Rosemary: Very helpful link. Thank you

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I hesitate to reply to actsoflight because I am a liver transplant recipient, not heart. I am over 2 years out from the transplant surgery now and doing well, thankful for every day of life that I've been given by the miracle that happened to me at Mayo Jacksonville. I've now had time to reflect on the caregiver's role and importance and that may be of value to anyone trying to plan for transplant, even though requirements may vary from institution to institution. First of all, a caregiver who can be present from the instant of the operation until the patient can return to independent living is so desirable. While it might be possible to cobble together a network of caregivers who can rotate in and out, I think one individual who is able to commit to a long period of dedicated service is the ideal situation. In my case, I live 5 hours away from Mayo in Jacksonville and I had a dear friend who was willing and able to hop in the car on a moment's notice and drive with me to JAX when I got notice that they had a liver for me. She wasn't my primary caregiver; that was my daughter who lives in Philadelphia who had arranged leave with her employer to be able to be my primary caregiver; she had come with me for a number of the preoperative visits to Mayo and was familiar with the transplant team and the physical layout of the facility and Jacksonville. She flew in when I was on the operating table and was there when I got back to the room on the Transplant unit. She stayed with me from that time, November 15th, throughout the postoperative observation period, returned with me to my home after my release, and went home the first week of January, so approximately 7 weeks. I had several very good friends who were able to assume the role of secondary caregivers, who would have stepped in and substituted for my daughter had the need arrived.

On reflection about arranging for a caregiver, there are a number of qualities and requirements which will make everything go smoother if present. The first is the willingness to assume such a critical role and the ability to take a substantial amount of time off from normal life. I might mention that while four weeks may be the average amount of time from transplant to return to home, there is no guarantee that it will be that short. Complications do happen and they can significantly extend the time needed to be spent near the hospital post surgery. Plans must be flexible.

Another thing to consider is the personality and abilities of the caregiver. It helps to have someone who is naturally compassionate, a person who would make a good nurse, who is attuned to the patient and sympathetic. In truth, it should be someone who loves the patient. Another quality which is invaluable is a detail-oriented and organized mind. My daughter is a natural organizer and note taker. I cannot tell you how much this helped my recovery because there is a role reversal that happens between patient and caregiver and the caregiver is "in charge" for a period of the postoperative time when the patient may be "fuzzy" at best.

The other point which occurred to me is that postoperative housing near transplant centers often includes endowed care houses and NPO facilities where the patient and caregiver may stay pre- and postoperatively for reasonable sums of money and enjoy great comfort and camaraderie with other patients in the same boat. Gabriel House in Jacksonville is just such a marvelous place. I would venture to guess that there is such a facility near UAB in Birmingham. Do the research because these facilities are worth gold in more ways than just money.

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@silverwoman

I hesitate to reply to actsoflight because I am a liver transplant recipient, not heart. I am over 2 years out from the transplant surgery now and doing well, thankful for every day of life that I've been given by the miracle that happened to me at Mayo Jacksonville. I've now had time to reflect on the caregiver's role and importance and that may be of value to anyone trying to plan for transplant, even though requirements may vary from institution to institution. First of all, a caregiver who can be present from the instant of the operation until the patient can return to independent living is so desirable. While it might be possible to cobble together a network of caregivers who can rotate in and out, I think one individual who is able to commit to a long period of dedicated service is the ideal situation. In my case, I live 5 hours away from Mayo in Jacksonville and I had a dear friend who was willing and able to hop in the car on a moment's notice and drive with me to JAX when I got notice that they had a liver for me. She wasn't my primary caregiver; that was my daughter who lives in Philadelphia who had arranged leave with her employer to be able to be my primary caregiver; she had come with me for a number of the preoperative visits to Mayo and was familiar with the transplant team and the physical layout of the facility and Jacksonville. She flew in when I was on the operating table and was there when I got back to the room on the Transplant unit. She stayed with me from that time, November 15th, throughout the postoperative observation period, returned with me to my home after my release, and went home the first week of January, so approximately 7 weeks. I had several very good friends who were able to assume the role of secondary caregivers, who would have stepped in and substituted for my daughter had the need arrived.

On reflection about arranging for a caregiver, there are a number of qualities and requirements which will make everything go smoother if present. The first is the willingness to assume such a critical role and the ability to take a substantial amount of time off from normal life. I might mention that while four weeks may be the average amount of time from transplant to return to home, there is no guarantee that it will be that short. Complications do happen and they can significantly extend the time needed to be spent near the hospital post surgery. Plans must be flexible.

Another thing to consider is the personality and abilities of the caregiver. It helps to have someone who is naturally compassionate, a person who would make a good nurse, who is attuned to the patient and sympathetic. In truth, it should be someone who loves the patient. Another quality which is invaluable is a detail-oriented and organized mind. My daughter is a natural organizer and note taker. I cannot tell you how much this helped my recovery because there is a role reversal that happens between patient and caregiver and the caregiver is "in charge" for a period of the postoperative time when the patient may be "fuzzy" at best.

The other point which occurred to me is that postoperative housing near transplant centers often includes endowed care houses and NPO facilities where the patient and caregiver may stay pre- and postoperatively for reasonable sums of money and enjoy great comfort and camaraderie with other patients in the same boat. Gabriel House in Jacksonville is just such a marvelous place. I would venture to guess that there is such a facility near UAB in Birmingham. Do the research because these facilities are worth gold in more ways than just money.

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@silverwoman Thank you for a well though reply and valuable information. I believe that even tho it wasn't a heart you made some excellent points.

@actsoflight you may want to read the post from silverwoman she has some great thoughts also for your friend.
Blessings
Dana

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@silverwoman

I hesitate to reply to actsoflight because I am a liver transplant recipient, not heart. I am over 2 years out from the transplant surgery now and doing well, thankful for every day of life that I've been given by the miracle that happened to me at Mayo Jacksonville. I've now had time to reflect on the caregiver's role and importance and that may be of value to anyone trying to plan for transplant, even though requirements may vary from institution to institution. First of all, a caregiver who can be present from the instant of the operation until the patient can return to independent living is so desirable. While it might be possible to cobble together a network of caregivers who can rotate in and out, I think one individual who is able to commit to a long period of dedicated service is the ideal situation. In my case, I live 5 hours away from Mayo in Jacksonville and I had a dear friend who was willing and able to hop in the car on a moment's notice and drive with me to JAX when I got notice that they had a liver for me. She wasn't my primary caregiver; that was my daughter who lives in Philadelphia who had arranged leave with her employer to be able to be my primary caregiver; she had come with me for a number of the preoperative visits to Mayo and was familiar with the transplant team and the physical layout of the facility and Jacksonville. She flew in when I was on the operating table and was there when I got back to the room on the Transplant unit. She stayed with me from that time, November 15th, throughout the postoperative observation period, returned with me to my home after my release, and went home the first week of January, so approximately 7 weeks. I had several very good friends who were able to assume the role of secondary caregivers, who would have stepped in and substituted for my daughter had the need arrived.

On reflection about arranging for a caregiver, there are a number of qualities and requirements which will make everything go smoother if present. The first is the willingness to assume such a critical role and the ability to take a substantial amount of time off from normal life. I might mention that while four weeks may be the average amount of time from transplant to return to home, there is no guarantee that it will be that short. Complications do happen and they can significantly extend the time needed to be spent near the hospital post surgery. Plans must be flexible.

Another thing to consider is the personality and abilities of the caregiver. It helps to have someone who is naturally compassionate, a person who would make a good nurse, who is attuned to the patient and sympathetic. In truth, it should be someone who loves the patient. Another quality which is invaluable is a detail-oriented and organized mind. My daughter is a natural organizer and note taker. I cannot tell you how much this helped my recovery because there is a role reversal that happens between patient and caregiver and the caregiver is "in charge" for a period of the postoperative time when the patient may be "fuzzy" at best.

The other point which occurred to me is that postoperative housing near transplant centers often includes endowed care houses and NPO facilities where the patient and caregiver may stay pre- and postoperatively for reasonable sums of money and enjoy great comfort and camaraderie with other patients in the same boat. Gabriel House in Jacksonville is just such a marvelous place. I would venture to guess that there is such a facility near UAB in Birmingham. Do the research because these facilities are worth gold in more ways than just money.

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Dear Silverwoman, You're truly a Goldwoman. You've been more than generous with your time and the invaluable information you've imparted here. I've passed this along to the individual I've in culling information for. Unfortunately, he doesn't respond in a way that indicates that he's "in the game" and ready to pull his weight. I think that from all I've read here from so many extraordinary people, that it's essential for the potential transplant recipient that they are part of the ENTIRE process. As it turns out, as bad as his heart condition is, he's not even on a waiting list. Until I hear back from him and he tells me that he's ready to jump into this, I'm not going to waste anyone else's time. I even gave him the link to this forum as he asked me to and as far as I know he hasn't joined.
Once again, thank you for your generosity of spirit and information you've imparted. This is an amazing forum.
To each and every individual here on "Connect" I wish you Good Health, Peace, Joy, and a prosperous New Year. XOXO <3

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I feel so sad for your friend. He is going to miss an amazing journey if he doesn't get his head in the right place.

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@silverwoman

I feel so sad for your friend. He is going to miss an amazing journey if he doesn't get his head in the right place.

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He's 65 and he's always been this way all of his life. People have had to walk away because of how destructive he's been to himself and others. I saved him a while back and there was zero gratitude of any kind. There's a sense of entitlement that I've never seen in anyone else in my entire life. That said, unless he has a miraculous epiphany, I won't do anything more.

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@actsoflight

Dear Silverwoman, You're truly a Goldwoman. You've been more than generous with your time and the invaluable information you've imparted here. I've passed this along to the individual I've in culling information for. Unfortunately, he doesn't respond in a way that indicates that he's "in the game" and ready to pull his weight. I think that from all I've read here from so many extraordinary people, that it's essential for the potential transplant recipient that they are part of the ENTIRE process. As it turns out, as bad as his heart condition is, he's not even on a waiting list. Until I hear back from him and he tells me that he's ready to jump into this, I'm not going to waste anyone else's time. I even gave him the link to this forum as he asked me to and as far as I know he hasn't joined.
Once again, thank you for your generosity of spirit and information you've imparted. This is an amazing forum.
To each and every individual here on "Connect" I wish you Good Health, Peace, Joy, and a prosperous New Year. XOXO <3

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@actsoflight Your individual may indeed be reading the posts. You do not have to sign up to be a member, to read. You sign up if you want to post.

As you have read, and surmised, it is a definite "team thing". Not only the transplant team of specialists, but the patient [recipient] themselves, and the caregiver team. All work together, and need to. In evaluation for a transplant of any kind, the transplant team does a thorough evaluation, not only physical, but mental, also. They want to know the patient is ready to do what is required.

On a similar note, I had a very good friend who turned to me for help, in a mental crisis. I was able to find his "Achille's heel" and convince him suicide was not an option. Severe disappointment that he never acknowledged my efforts.

Please stay in touch with us. There are caring people here, and if you peruse the other discussion groups, you may find a great supportive group for you.
Ginger

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Unfortunately, I know him like I know the back of my hand. He wants to be spoon fed. Speaking of which, he's morbidly obese and has yet to deal drinking issue. Unless he actually reaches out and tells me he's prepared to do what needs to be done in a timely manner, I'm not going to enable his irresponsible behavior.
Yes, I will stay in touch with all of you. Kisses and best wishes

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*deal with his drinking issue

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@actsoflight, I don't believe he would qualify for a heart transplant if he couldn't prove that he is willing and capable of living a healthy lifestyle. It seems almost as the decision for both of you has already been made. You sound like a good friend to have reached out and researched for him and for you, as a potential caregiver. Best wishes!

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