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

I guess the first specific question I have is, how how many months should a caregiver expect to have to realistically set aside in order to fulfill this commitment ?

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@actsoflight

Thank you so very much Dana. I sent this on to the person who is in need of this transplant. I live in NYC and he in Mississippi. It would appear that being his care giver wouldn't be a wise choice. There's no way I could be away for all those months. I was also reading about the fact that one never knows when that call "we've got a match" could happen. He's got a little dog that has to be considered that can't be left alone. So one would really have to be ready and able to get to his home.

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@actsoflight Yes that's definitely too far at least at first. As to the waiting period I was already in the hospital when mine became available. I was having a tough time the 2 months prior to the transplant and probably was not going home without one. That's not the typical case but yes the call can be anytime and usually you would need to be at the hospital within a few hours. I have heard that most on a waiting list have there bags packed ready to go anytime day or night. With the Heart they need to transplant relitinly quickly once the heart leaves the doner. Mine was like within 2 hours if I remember. I got the word about 6 pm that one was available and the surgery started the next morning about 5 AM. They usually keep the heart in the doner untill.the last moment and depending how far away will fly it to the Receipiant. I was already preped and on bypass when the heart arrived where I was. Just to give you an idea how fast it can happen.
Dana

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@actsoflight

Good morning Ginger: I don't have any specifics regarding even if he's on a waiting list. He sprung this on me last night without providing any details. He's been a critical heart patient for several years and now has an EF of 15%. He's also in chronic Afib. I might try to convince him to join this forum.

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@actsoflight @danab has brought up really good points. And your questions are certainly valid. I will tell you from my experience, if I may. My husband, when he asked me to be his caregiver, was simply a good friend, and we lived 100 miles apart. It was an honor to be considered, and I said "yes". Not knowing much about what to expect, but figuring it would work out. I was pretty sure he would be transplanted at the center 20 miles from him.

But, the call came in from the second center, 125 miles south of him. 225 miles south of me! They told him in the morning he was a possible recipient of a kidney, but he was #3. Later they called to say he was #2. He had a bag packed. When the call came in, he was already hooked up to his nightly peritoneal dialysis. He climbed in his truck, threw in a bucket to drain in to, and left. He forgot his packed bag. The deceased donor had been on life support, and at 4pm, the harvesting of useful organs started. I know two kidneys and the pancreas were successfully transplanted. His surgery was at 9pm that same night.

Good for you for thinking of all the questions you are bringing up. Rest assured that there are people reading these posts and being educated as we speak!
Ginger

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@actsoflight

I guess the first specific question I have is, how how many months should a caregiver expect to have to realistically set aside in order to fulfill this commitment ?

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@actsoflight A lot of the effort of the caregiver duties will be based on how ill the patient is before a heart is received. For me I came in with a ton of residual health and so what my wife was told to she would do never really happened. Her major task was to hold me back as I felt like I should b e slaying dragons. Of course she supervised my weekly pill pack and regularly asked me if I took my pills (generally followed by an exaggerated and exasperated yes from me). She did drive me to numerous follow-up appointments which are 3-4 times per week for the first two months and then maybe one a week thereafter. I think the worst thing for her was tolerating the emotions due to steroid use in recovery. Luckily for both of us I was a crier and not a jerk.
Best always,
s!
Scott Jensen

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Thanks Ginger. Here's another question. Being that the recipient will be immune compromised and on drugs to help with that, what happens if the caregiver gets sick or is compromised in some way? Should there be back up caregiver ready and willing to drop everything to take up the slack?

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@actsoflight

I guess the first specific question I have is, how how many months should a caregiver expect to have to realistically set aside in order to fulfill this commitment ?

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@actsoflight Time would depend on if he has anyone else available in his local area and the distance to the hospital. I'm guessing he is living alone at the moment and can get around somehow. So for the wait before receiving the heart would be like it is now. If it was me I would probably plan on a couple of weeks during the time before to go and be with him during the initial planning stage with the hospital and Doctors. Then you probably could go home until he gets word. If he can get himself.to the hospital during the wait period. Then when the call comes he heads to the hospital and you grab the next flight done to him. He will probably be in the hospital for about 2 weeks after transplant but they will want his caregiver to be there also to get briefed on how to care for him at home and to prepare for the return home. At that point I probably would say 6 months maybe less but here is where it can be so different between people. The first month after leaving the hospital you are at the hospital almost daily. My wife and I stayed in a hotel the first month close by to the hospital since we lived about 70 miles away and found it easier than driving back and forth. Month 2&3 your up at the hospital at least once a week for labs and follow up and it keeps tapering off to bi weekly up to the 6 month. Then after that probably monthly up until the first year. Now if he's close to the hospital after about 2 months post he could maybe drive himself or get some kind of taxi, Uber etc. It's just the biopsies that require a driver usually. But I would definitely plan a time to talk with the particular hospital and what protacalls they have about this. I'm in Arizona and had mine at Mayo Clinic. The only other 2 campuses are Minnisota and Florida so I'm not sure which hospital he may be using.

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@scottij

@actsoflight A lot of the effort of the caregiver duties will be based on how ill the patient is before a heart is received. For me I came in with a ton of residual health and so what my wife was told to she would do never really happened. Her major task was to hold me back as I felt like I should b e slaying dragons. Of course she supervised my weekly pill pack and regularly asked me if I took my pills (generally followed by an exaggerated and exasperated yes from me). She did drive me to numerous follow-up appointments which are 3-4 times per week for the first two months and then maybe one a week thereafter. I think the worst thing for her was tolerating the emotions due to steroid use in recovery. Luckily for both of us I was a crier and not a jerk.
Best always,
s!
Scott Jensen

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This person who has asked me for assistance is a diabetic and has other health issues including a very bad back and somewhat obese. He's working on getting his weight down. That's been an issue for nearly 2 decades.

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@actsoflight

This person who has asked me for assistance is a diabetic and has other health issues including a very bad back and somewhat obese. He's working on getting his weight down. That's been an issue for nearly 2 decades.

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@actsoflight Those could complicate things if his heart is already at 15% that's pretty low but the overweight can be a problem during the approval process. Not the ideal situation. The thing I've knoticed with some.i have met thru this process is the better you are in the area under his control the better. This is major surgery and looking back I wish I had been in better shape prior. Probably where a caregiver is also a great need is emotional. You need someone pushing you to get thru what is good for you. We as paients I think don't always realize how much our caregoves went thru also. I also highly recommend a backup person so the primary can gets some time to themselves. My wife delayed her own health with trying to care for me. She delayed doctor apts and other things she needed during that time. I commend all the caregivers out there. I had my.daughter also close by but my stubborn wife (I say that with love) had to be there every moment. I finially convinced her to take some time to herself once I could do most things on my own. As I always would say at home my daughter or 911 is only a phone call away. Hope that helps.

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@actsoflight

Thanks Ginger. Here's another question. Being that the recipient will be immune compromised and on drugs to help with that, what happens if the caregiver gets sick or is compromised in some way? Should there be back up caregiver ready and willing to drop everything to take up the slack?

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@actsoflight This is a great question, and I believe there should be a second person available to step in if needed. My husband's daughter was about 30 miles away as he recovered at home, if he needed her and I wasn't there. I was still at my place 100 miles from him part of the week during his recovery, holding down a part-time job. He also had two neighbors who checked in on him, and his co-workers kept a close tab.
Ginger

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@actsoflight

I guess the first specific question I have is, how how many months should a caregiver expect to have to realistically set aside in order to fulfill this commitment ?

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@actsoflight Good Morning, the primary caregiver could stay as long as they can up to 6 weeks with you. If the primary could not stay up to 6weeks, as long as you have alternates to take over when they need to leave, that is fine. The caregiver is very important to prepare meals and grocery shop, do the necessary laundry and clean your spaces often. Timely medication is vital and food is important at pill times! Also that person will need to be available to drive the patient to appointments at the medical building every other day for the first several weeks. Sometimes they might need to pick up extra prescriptions at the hospital pharmacy! It is a busy job for those weeks but good sleep is super important for them to be recharged every day. My mom of 75, was our caregiver. She is naturally a loving and caring soul who would jump at this chance to help my husband (kidney receiver ) and myself (kidney donor). It is a very important job!

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@mrimler

@actsoflight Good Morning, the primary caregiver could stay as long as they can up to 6 weeks with you. If the primary could not stay up to 6weeks, as long as you have alternates to take over when they need to leave, that is fine. The caregiver is very important to prepare meals and grocery shop, do the necessary laundry and clean your spaces often. Timely medication is vital and food is important at pill times! Also that person will need to be available to drive the patient to appointments at the medical building every other day for the first several weeks. Sometimes they might need to pick up extra prescriptions at the hospital pharmacy! It is a busy job for those weeks but good sleep is super important for them to be recharged every day. My mom of 75, was our caregiver. She is naturally a loving and caring soul who would jump at this chance to help my husband (kidney receiver ) and myself (kidney donor). It is a very important job!

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@mrimler: I'm a bit confused. I'm hearing that a caregiver would be necessary for several months, 6 or more. And, if there's an infection or any sign of rejection the number of months a caregiver would be needed could be months longer for a variety of reasons.

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@actsoflight

@mrimler: I'm a bit confused. I'm hearing that a caregiver would be necessary for several months, 6 or more. And, if there's an infection or any sign of rejection the number of months a caregiver would be needed could be months longer for a variety of reasons.

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@actsoflight I can't speak for others and between different types of transplant can be quite different. I am a heart transplant and most of the people you see here are kidney and liver which unlike Heart can get a organ from.a living donor. Actually that is a popular way which can be more scheduled. @mrimler was a liver of kidney so it may have a quicker recovery. With a Heart the surgery itself is different as it's open heart so there are additional healing issues with the chest verses the adomine. I won't speak for them since I don't know what there surgery is like. If you click on a person's name in a post it will take you to there page and you can see more information on them. I hope that helps.
Dana

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