Planning for Transplant Recovery - Kidney Transplant

Kidney Transplant
1,481 members617 posts

Planning for Transplant Recovery

Jayhawker
Jayhawker
21 Replies

Hello:)

I have just been approved for a transplant. Of course I’m excited to learn that I meet transportation pant eligibility criteria. I’ll be waiting 3 years or a little longer for a deceased donor kidney. I am the last person living in my family. So I’m wanting some thoughts regarding a few issues:

1. I could go from the hospital to a hospital to home program for 1-2 weeks post surgery. But I’m not sure if this is really necessary. Please share your thoughts.

2. If I don’t go to a hospital to home program would having someone drop by daily for the first 5-7 days that I’m home be advisable? I’m thinking either a home helper through a program for seniors or a home healthcare nurse???

3. I’ve got a dog, a little Shih tzu. She’s house trained and doesn't shed. But I’m thinking that I may need to find someone who will provide foster care for her during the surgery and for the first 5-7 days after I get home. But is it necessary for her to be away once I return home??

Basically, I’d appreciate hearing what recovery was like over the first few weeks after you returned home from the surgery. I want yo be sure I have enough supports in place.

I’m planning to rely on friends for social support and to drop by and check on me once a day for the first few weeks after I get home. I’ve got transportation covered. I also use a grocery delivery company and my medications are delivered to my front door by Fed Ex. And finally, i have a housecleaner who comes once a week. She can come more frequently if needed post transplant as I’m recovering.

So am I okey planning to come home rather than going to s hospital to home program when I’m dismissed from the hospital? If so, what additional supports should I plan to be sure coming home will work. I’m sure I’d be more comfortable at home.

Thanks!

Jayhawker

21 Replies
oldestnewest
WYOAnne
WYOAnneNKF Ambassador

I would not think you would need to go to a hospital to home program. It may be necessary if you had some unexpected issue during your surgery or after. But that is not very likely.

I probably would have some healthcare person stop by those first 5-7 days, since you live alone. They could double check on your well being. Those first few months you will need to take your BP several times a day as well as your temperature and double check on your incision and how it is healing.

I would probably ask someone to take care of your dog for the first week or so after you are home. It will be hard enough to take care of yourself at first. After that though, your dog will help you keep moving. While still in the hospital, they will have you up and walking the first day. Everyday will get better and you will walk a little more. So, once home, your dog can help you with the exercise - daily walks, letting dog outside, water, food.....

For me that first week home, was hard to even think of cooking. We had friends from the Air Force who were living in Canada, came to help those first 10 days. She cooked and he helped by driving me to my labs. At first I had labs done every other day

Once home, your bed will never feel as comfy as it does then. Once home you will have to do more for yourself than you did in the hospital. Now - this is a good thing. The more you move the easier it becomes and the faster you will heal. Walking is the best exercise after transplant. Start slow and try to increase the time every few days or so. You shouldn't do anything that puts pressure on your abdomen or incision.

You will not heal as rapidly after a transplant. The immunosuppressants prevent the healing process.....Now this was 1999, but I had "staples" holding my incision together. My staples were in for a month before they were removed.

You should do fine after transplant. Seems like you have really thought ahead - house cleaning, grocery delivery, transportation and friends dropping by.

EATING and fixing a meal is the only rough part.... I am sure you can work that out too.

Take care. Let me know if you have any other questions?

WYOANNE

1 like
Reply
Jayhawker
Jayhawker
in reply to WYOAnne

Thanks, WYOANNE🐶

This does sound encouraging. I’ve definitely got some neighbors who will either drop food off or help me fix some food. I’m also glad to hear that I may be able to have Izzy back home with me soon after I return home. I suspect one of my neighbors will volunteer to provide foster care for her for a few weeks. I’ll definitely enjoy having her back home with me both for walking and for company.

I can certainly have a healthcare person set up to check on me daily for the first week or a little longer after I get home.

I’m looking forward to the additional patient education I’ll be receiving tomorrow morning. Of course right now the main thing I need to do is everything I can to remain healthy enough for the surgery when a kidney comes. Walk, walk, walk—and light workouts on my elliptical machine.

Jayhawker

Reply
Dixidude39

Great news, Jawhawker! You do highlight a problem many face: post op surgical care when you are single, a widow or widower, etc. Nice to have this on-line support group to get the answers you need.

1 like
Reply
Dara3351

My transplant team would not consent to the surgery until I had someone to stay with me for the first two weeks. The first week I felt very weak. My son made my meals and made sure I took my meds, did my breathing exercises and walked daily so as not to get blood clots. Each day I got stronger which felt great. I don’t think I drove the first week. I know I was getting my blood drawn twice a week. I even bought a chair to put in my shower as a safety precaution which definitely helped. The transplant team gave me a folder to record my temperature, weight, and blood pressure .This is a major surgery and it will take time to heal. Don’t push it! I am now 10 months past transplant and finally feel like myself. Your meds will change based on your blood draws. Don’t be alarmed. Good luck!

2 likes
Reply
Jayhawker
Jayhawker
in reply to Dara3351

Thanks for sharing this with me. My transplant hadn’t said anything to me about this one way or the other. I may well just plan to go to a hospital to home program for the first two weeks post transplant. Two people I had tentatively lined up are now planning to move out of state this summer. I’ll keep looking. But I want a plan and a back-up plan. That way I’ll have some real confidence that I’ve git this covered.

I’ve still got s few other options of people who might be willing to come and stay with me.

But a hospital to home program would be a good back-up plan.

They told me at the patient education this morning that it will likely be between 2-2 1/2 years before I’ll get a deceased donor kidney. That was shorter than I had expected to hear.

Jayhawker

Reply
Arih

My husband is a strong man and very responsible. Always took his medication on time and worked full time during his diyalisis and even during his feet swelling. Once he got a call for transplant I took two weeks off, and Im glad I did. Once they were releasing him after transplant, the whole team give you many many instructions. There is a lot of medications that needed to be taken at particular timings. Once we got home, he didn't remember anything, I was the one who took complete resposibility. (Even though he's a strong man) first few days were very difficult. Can't get your meal. He barely needed therapy, but some people do. You get depressed being alone. And in pain. I think there's a genuine reason they insist having a caretaker for atleast two weeks.

1 like
Reply
Kbressler
KbresslerNKF Peer Mentor

You would benefit having someone there for a couple of weeks. Supervision and assistance post op is in your best interest.

1 like
Reply
Jayhawker

Okey, thanks for all your comments. I had two people prepared to stay with me but they’re now both moving out of state this summer. So I’ve got a few more people I’ll talk to about this. I’ll also keep trying to find another 2-3 people. Plus I’ll talk with my transplant nurse coordinator about hospital to home programs. They would be a good back-up in case I keep running into problems with people moving away, developing their own serious chronic conditions, etc.

It is certainly critical that I get through the first several weeks post-transplant well. In fact the first year is critical but will become progressively easier with each passing month.

I typically develop plans and then back-ups to the plans and finally back-ups yo the back-ups🐶

On the up side I learned today that I will Lille have a deceased donor kidney in 2 to 2 1/2 years. That’s about 2 years earlier than I had expected I’d hear.

Jayhawker

Reply
Dara3351
Dara3351
in reply to Jayhawker

I have a deceased donor (20 year old)....I had a lot of people say they would be my care taker but backed out. The first week is critical...you will need someone to drive you to your first Dr appointment after the transplant. Nutrition, exercise ( walking) sleep and staying hydrated is most important.

1 like
Reply
Jayhawker
Jayhawker
in reply to Dara3351

So what did you ultimately do to secure a person to stay with you for the first few weeks?

Jayhawker

Reply
Dara3351
Dara3351
in reply to Jayhawker

Well my son stayed with me. Do you have any family? Even if you get someone for the first week and someone else the second week or 3 people to break it up. Talk to your transplant team for help.

Reply
Jayhawker
Jayhawker
in reply to Dara3351

I’m the last one alive in my family. I never married and never had kids. I’m planning to try to find 3-4 people to split it up. And, frankly, I may have to go from the hospital to a hospital to home program.

I’ll talk with my transplant nurse coordinator to see what she suggests.

I’m sure I’m not the only one to be in this situation.

Jayhawker

Reply
Dara3351
Dara3351
in reply to Jayhawker

Well, my brother who lives in the same town and my nieces wouldn’t/ couldn’t do it so that was not good., didn’t make me feel good. My son lives in Boston and took a week and a half away from work that I know he couldn’t afford. The first week is the most important because you will be weak. But you do need 24 hr monitoring. Hope you can find someone...neighbor?

Reply
Jayhawker
Jayhawker
in reply to Dara3351

My neighbors are great but travel a lot to see their grandchildren. Part of the issue here is the unknown as to when the kidney will arrive.

I mentioned a hospital to home program in the first patient education class. I also thought I had at least 2-3 people who had volunteered to come and stay with me. But their plans have already changed.

I’ve got a few more options among friends. But I feel pretty strongly that I want a back-up plan that I KNOW will work in case my pool of available friends peters out or the kidney arrives when they are away on vacation or something like that.

The transplant center didn’t seem to be opposed to the hospital to home program. But I need to talk with them specifically about this option and then see if they would have a preference of requirements that program will need to meet.

Fortunately I have enough money in a health savings account to cover that option should that be needed. And I’m still working which is also very helpful. I’ve got good medical insurance through work. I plan to continue working for the next 5-6 years. That will give me sufficient cash flow to deal with all of this according to the financial coordinator who looked at my finances and went over them with me last July.

So I’ve got several positives. But I’ve also got my own set of challenges. Well, I’ll call the transplant center next week to see what they say about hospital to home programs. Then, if that’s an option, I’ll contact several rehab programs in my part of the metro area. Then my neighbors and friends will be able to jump in and help me some when I get home a few weeks after the transplant...

Jayhawker

Reply
Dara3351

Hope it works out. The first week is the most crucial. You are not out of the woods in the second week. I still have not gone back to work. Feb 2020 will be a year

1 like
Reply
Jayhawker
Jayhawker
in reply to Dara3351

This is definitely helpful information. I just want to be sure I have sufficient support set up. If I don't need all of it, that’s fine. But I don’t want to be scrambling for support as the date when I may get the call comes closer.

I’m sure something will work out. If all else fails I can hire in home health care and come back to my home. That would be the most expensive option. But it may be the best option ... I’ve had to do that a few times in the past 2 years.

However, I’ve still got a few options out of friends. Who would have thought it would be nearly as difficult to find someone to stay with me for a few weeks post transplant as it is to ask someone to serve as a living donor?? Kind of crazy!

Jayhawker

Reply
Herkidney

Congratulations on being approved for a transplant! I am now 15 months post transplant. You have gotten great advice already from other members, so my response will be somewhat brief as much has been covered already.

*line up rides to your clinic appointments for the first few weeks as the transplant team usually will advise no driving for a limited time and there are too many germs around public transportation

*a meal plan especially for dinner is great so that you don’t have to worry about food prep (maybe prepare and freeze some meals ahead of time if possible). After the first few days at home you may be able to prepare simple breakfast & lunch

*if possible have someone stay with you the first 3-4 nights just in case (my husband was my living donor, so he was recovering too. We had two teens at home that were basically taking care of themselves, so they were home in case of a true emergency but not significant help at night time.) I wish that at least one of our relatives had stayed with us for a few nights for our piece of mind, but they didn’t.

*grocery delivery is an amazing option

*shower chair is a must for the first few weeks

* have someone help you sort your meds the first couple of times. My transplant center gave me a pill organizer (seven day, four times a day organizer)

*have a list of shows, movies and books ready as you will not be spending too much time outside the home for the first 2-3 months other than doctors visits

*loose comfortable cloths such as sweats is a must

*have a bag/bin/basket for your pill organizer, blood pressure cuff, thermometer, and paper to record the numbers

* you’ll need a scale as they want you to weigh yourself daily

*if you are able to have someone clean your home weekly for a month or so, that would be amazing so that you don’t have to bend

*remember, your job for the first three months post surgery will be to rest and to follow the transplant center’s instruction. Don’t do too much just because you may feel strong

*walk, walk, walk. Either inside the home or outside (with a mask) if possible

*the best of luck to you.

1 like
Reply
CA_Coast

I also have a January date! My center would not accept me unless I had a 24/7 caregiver for the first two weeks. I would also advise you to have someone with you to hear all the post-operative instructions and prescription med info. I think it will be a lot of information!

1 like
Reply
Jayhawker

Thanks for all your input. I do definitely plan to have something set up for 24/7 care post-transplant either in home via professional transitional care or in a hospital to home program.

Frankly, I’m just trying to decide which of those two would be my preference. But it may come down to which can be facilitated with minimal advance notice.

I’ll also set up transportation to/from the transplant center for the post-op appointments. The transportation will be easy to set up.

Jayhawker

Reply
JEanes55

You sure would be more comfortable at your own home. Having the dog at a sitter would be nice too. You sound like you have thought everything out. Best wishes to you!!

1 like
Reply
Jayhawker
Jayhawker
in reply to JEanes55

Actually, after exploring this further late last week I have learned that releasing me to a hospital to home program for two weeks post transplant surgery is what my transplant team prefers for me. I’ve learned more about how this will work as well as how it will be covered financially. Apparently my insurance will cover this for up to 20 days post surgery. I had thought I’d need to be prepared to cover this out of pocket, but apparently not. Just another advantage to me still working; I have good health insurance through work.

Anyway, it’s clear that all I need to do to prepare for the surgery recovery is to have a few people prepared to provide foster care for my dog. I’ll also have a few people ready to check on me daily when I get home as well as to transport me to/from the post op appointments.

So it looks as though I won’t have much to do to be ready for the recovery from the surgery. Now it’s just important for me to do everything I can to take care of myself and stay as strong as possible; plus keep my spirits up. It will be about 2 1/2 years before a deceased donor kidney will likely arrive. I’m so glad to still be working. That really does help pass time. I’m fortunate to have a job I truly love.

Well, the wait begins🐶

Jayhawker

Reply

You may also like...