Transplant Caregiver Advice: Got Tips to Share?

Posted by Ginger, Volunteer Mentor @gingerw, Jan 3 10:29am

In October 2016, my now-husband had a kidney transplant. In fact, we met at a kidney disease support group! We were barely starting a relationship, and there was a lot yet to learn about each other. After his transplant I had to learn how to deal with numerous follow-up appointments and accompanying labwork, plus his changes in attitude and lifestyle after many years on dialysis. To go from a very active person to staying quiet and not on-the-go all the time during recovery, was difficult for him. To suddenly have what seemed to be a pharmacy-in-a-box was brand new and challenging to manage. I accompanied him to all appointments and kept detailed notes. I asked a lot of questions, and asked for answers to be repeated in “laymen’s terms” so we could be certain we understood clearly.

I wish I had better known that each transplant is different, due to different circumstances, and each person being individual in their approach, reactions, etc. Doctors can speak in generalities, but I needed to learn about my husband’s particular case. The tips I would offer another caregiver are:
– Learn to ask questions.
– Keep a journal. It was a valuable tool for us.

What would you like to tell to the caregiver whose loved one is on the transplant list? What advice do you have for fellow transplant caregivers? What do you wish you had known?
Ginger

Such a great topic to start, @gingerw. Caregivers are so critical to the success of the transplant and the recipient's well being, as we all know. I'd like to bring fellow transplant caregivers into this conversation too: @stella25, @hansonca03, @lisamb, @jbilton, @jodee, @fatherscaregiver, @genocurt, @chevynova67, @gaybinator, @28snash, @myson, @kaegee

What do you wish you had known? What tips would you share with other transplant caregivers who will be accompanying a loved one on their gift of life journey?

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@colleenyoung

Such a great topic to start, @gingerw. Caregivers are so critical to the success of the transplant and the recipient's well being, as we all know. I'd like to bring fellow transplant caregivers into this conversation too: @stella25, @hansonca03, @lisamb, @jbilton, @jodee, @fatherscaregiver, @genocurt, @chevynova67, @gaybinator, @28snash, @myson, @kaegee

What do you wish you had known? What tips would you share with other transplant caregivers who will be accompanying a loved one on their gift of life journey?

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I never had a caregiver 😔 I had to for it on my own. Husband was and is of no help whatsoever 😡

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@gaylea1

I never had a caregiver 😔 I had to for it on my own. Husband was and is of no help whatsoever 😡

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@gaylea1 I am sorry to hear this. If you would ever have an opportunity to explain how this affected you, what would you say?
Ginger

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@colleenyoung

Such a great topic to start, @gingerw. Caregivers are so critical to the success of the transplant and the recipient's well being, as we all know. I'd like to bring fellow transplant caregivers into this conversation too: @stella25, @hansonca03, @lisamb, @jbilton, @jodee, @fatherscaregiver, @genocurt, @chevynova67, @gaybinator, @28snash, @myson, @kaegee

What do you wish you had known? What tips would you share with other transplant caregivers who will be accompanying a loved one on their gift of life journey?

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I’m also interested in receiving advice regarding caring for a heart transplant recipient. I’m struggling right now. On the one hand I’m so thankful for the surgery. On the other hand I’m ready to start living again. It’s only been 4 months. What do you do when one partner is recuperating and the other is healthy and active?

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@debbief

I’m also interested in receiving advice regarding caring for a heart transplant recipient. I’m struggling right now. On the one hand I’m so thankful for the surgery. On the other hand I’m ready to start living again. It’s only been 4 months. What do you do when one partner is recuperating and the other is healthy and active?

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@debbief if the person can be alone then you should be able to do many things, but bear in mind that the post-transplant patient would probably like to be doing more too so try to not abandon him or her constantly. When I was post-transplant (liver) I encouraged my husband to do stuff. I was very able to be left alone after a few weeks. Of course that does vary with each patient.
If the patient continues to need a lot of care you need to be patient, they will be able to do more fairly soon. In the meantime is there anyone who could be with him/her? When I was pre-transplant my husband went away for a weekend so my daughter stayed with me. For a shorter time my sister came.

@gaylea1 that must have been very difficult for you. When I have been recovering from something – transplant, TKR – my husband has done all the shopping, something he abhors and never does otherwise, and he was very solicitous of me, sometimes too much!
JK

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@gingerw

@gaylea1 I am sorry to hear this. If you would ever have an opportunity to explain how this affected you, what would you say?
Ginger

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@gingerw ..honestly Ginger I am somewhat better dealing with things better on my own. What did affect me was when I had to retrieve things like a glass of water, something to eat, or bathing. I overcame these obstacles by taking measures pro actively. Such as, keeping a pitcher of ice water beside me, making sure I had ready snacks (nuts, granola bars, crackers) within reach, and I outfitted the tub/shower with hand grips and a shower chair ( all rented). I had my family get me zip up sweat shirts and track pants. I organized all this on my own. I had the drug store deliver my medications to my house. There were still obstacles but I persevered. My husband left for work at 6am and returned about 4:30pm so I was alone most of the time. I wasn't allowed to drive and we lived in a somewhat rural spot. I was housebound and thats when I fell in love with Netflix and britbox lol…

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I am a liver/kidney transplant recipient. When I asked my husband who is my caregiver about advice for caregivers, here's what he shared:

-Get used to a new normal, based on the patient's need.
-Whatever is on the caregiver's agenda is secondary to the patients needs.
-Caregivers have to be ready to make sacrifices in order to fulfill the caregiver role.
-You can't change the way it is.
-Being a caregiver becomes less demanding as the transplant recipient improves.

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@debbief

I’m also interested in receiving advice regarding caring for a heart transplant recipient. I’m struggling right now. On the one hand I’m so thankful for the surgery. On the other hand I’m ready to start living again. It’s only been 4 months. What do you do when one partner is recuperating and the other is healthy and active?

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@debbief, Congratulations to both you and your husband for a successful transplant.
I would like to invite you to meet other heart transplant patients who will be able to assist you with caring for your husband. You just have to click, then post a question or say, 'Hi'. Heart transplant recovery: What to expect?
https://connect.mayoclinic.org/discussion/heart-transplant-recovery/
Is your husband able to be left alone for periods of time? You sound worn out to me. Is there anyway that you can get away to relax and to take care of you?

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@debbief

I’m also interested in receiving advice regarding caring for a heart transplant recipient. I’m struggling right now. On the one hand I’m so thankful for the surgery. On the other hand I’m ready to start living again. It’s only been 4 months. What do you do when one partner is recuperating and the other is healthy and active?

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@debbief It is a whole new way of life, for the transplant recipient and all family members. Following the instructions from the transplant team is critical for everyone. And the recipient needs to understand also that their caregiver team has needs to be met, too. Don't forget about yourself! You can't be the best caregiver you want to be, unless you are also taking care of yourself. Is there someone who can spell you for a while and give you a break to get out and just enjoy yourself for a few hours? Being 4 months out from transplant, see about reinserting yourself into the things that brought you Joy before the surgery. It is a challenge to involve the patient in new things that they had also put on the back burner when they were ill. My own personal experience shows that if it is needed, don't hesitate to reach out for counseling help.
Ginger

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@gaylea1

@gingerw ..honestly Ginger I am somewhat better dealing with things better on my own. What did affect me was when I had to retrieve things like a glass of water, something to eat, or bathing. I overcame these obstacles by taking measures pro actively. Such as, keeping a pitcher of ice water beside me, making sure I had ready snacks (nuts, granola bars, crackers) within reach, and I outfitted the tub/shower with hand grips and a shower chair ( all rented). I had my family get me zip up sweat shirts and track pants. I organized all this on my own. I had the drug store deliver my medications to my house. There were still obstacles but I persevered. My husband left for work at 6am and returned about 4:30pm so I was alone most of the time. I wasn't allowed to drive and we lived in a somewhat rural spot. I was housebound and thats when I fell in love with Netflix and britbox lol…

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@gaylea1 You brought up little things like water, snacks, easy clothes. Thank you! This is a great start to the tips we caregivers need to hear, and pass on.
You sound like a strong woman, and I am glad you posted today, and are doing well.
Ginger

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@gingerw

@gaylea1 You brought up little things like water, snacks, easy clothes. Thank you! This is a great start to the tips we caregivers need to hear, and pass on.
You sound like a strong woman, and I am glad you posted today, and are doing well.
Ginger

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@gingerw thank you Ginger. I'm glad I could pass on some tips. As for being strong, we were all in the same boat at some point. We do what we need to and that just makes us all stronger 💚

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Wow, these are great questions! I feel at the Mayo Clinic they do a very good job in preparing the caregivers for what is coming; however, there are always surprises. We stayed at the Gabriel House and saw and learned from a diverse group of patients and caregivers. My recommendations would be:
1) Be prepared for the unexpected. My husband had a lung transplant and was released after a week with no issues or side effects. A month later he had to have a hiatal hernia surgery and that seemed to set him back. In addition, I was required to blenderize his diet for two weeks, which was a challenge for him because his stomach could not take the liquid food and for me because I struggled with the lack of space and tools to make this happen. In addition to this, he fell and sprained his ankle which put him behind in his pulmonary rehab, which made us doubt that we would be released at the end of 90 days.
2) Get support from friends and familiy. When my husband had his transplant I was all by myself for 6 hours in the waiting room. Those were the longest hours of my life, but I felt that I was embraced by a virtual community as I was in permanent contact with my husband's sister and brother, our daughter, and our Pastor. After that, I found a wonderful group of friends at the Gabriel House. In particular, I had a lady friend that would walk with me and we became each other's confidants of our frustrations (which will happen).
3) Be prepared to deal with your loved one's frustrations. The Mayo Clinic reinforces the importance of the caregiver to be very involved in the patient's care. We are supposed to learn all the medications, reading lab results so that we can ask intelligent questions, cook nutritious meals and observe the patient for changes. We also have to help with other activities of daily living (i.e. showering). Although this can be overwhelming for the caregiver, it can also be overwhelming for the patient if the caregiver is smothering. The patient, who is usually independent, has to be allowed to do what they can for themselves. At the Gabriel House, they conducted a focus group with male patients who had had a transplant, and while they all appreciated the care received from their partners, they all complained that they felt smothered.
I hope this helps caregivers to be.
Denice

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I would like to know why a person who has depression can’t give a sibling a lung , I read that someplace

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@richardsville

I would like to know why a person who has depression can’t give a sibling a lung , I read that someplace

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@richardsville, I commend you for inquiring about living organ donation. I can tell that you are very concerned about your sibling, and I want to assure you that your interest along with searching for information has to be a bright spot for him/her. I have no background or knowledge from my experience to share about living lung transplant. This is cedrtainly something that your sibling's doctor and transplant center can discuss with you.

Organ transplant is a complex procedure and comes with benefits and well as risks. The aim of transplant surgery is to provide the best possible outcome for the patient (and donor when there is a living donor). Both physical and mental health are considered when someone is considering being a living donor. I have located the following information from UNOS Transplant Living. This information applies to ALL living organ donors.
"Living donor candidates should be:

In good physical and mental health
At least 18 years old
Be willing to donate: No one should feel that they MUST donate
Be well informed: A good donor candidate has a solid grasp of the risks, benefits, and potential outcomes, both good and bad, for both the donor and recipient
Have a good support system
Transplant program assess the medical and psychosocial health of potential living donors. "
https://transplantliving.org/living-donation/being-a-living-donor/qualifications/
@richardsville, Is your sibling already on the transplant list, or about to be listed? What questions do you have? How can we help you while you walk beside your sibling?

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@rosemarya

@richardsville, I commend you for inquiring about living organ donation. I can tell that you are very concerned about your sibling, and I want to assure you that your interest along with searching for information has to be a bright spot for him/her. I have no background or knowledge from my experience to share about living lung transplant. This is cedrtainly something that your sibling's doctor and transplant center can discuss with you.

Organ transplant is a complex procedure and comes with benefits and well as risks. The aim of transplant surgery is to provide the best possible outcome for the patient (and donor when there is a living donor). Both physical and mental health are considered when someone is considering being a living donor. I have located the following information from UNOS Transplant Living. This information applies to ALL living organ donors.
"Living donor candidates should be:

In good physical and mental health
At least 18 years old
Be willing to donate: No one should feel that they MUST donate
Be well informed: A good donor candidate has a solid grasp of the risks, benefits, and potential outcomes, both good and bad, for both the donor and recipient
Have a good support system
Transplant program assess the medical and psychosocial health of potential living donors. "
https://transplantliving.org/living-donation/being-a-living-donor/qualifications/
@richardsville, Is your sibling already on the transplant list, or about to be listed? What questions do you have? How can we help you while you walk beside your sibling?

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His lung Dr is making the call to see about a date for brother the be evaluated

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