Transplant while alone

[horsie63]

Has anyone gone through the transplant and recovery process by themselves? While my husband is very supportive the transplant center is 2 hours away and we live on a farm. The horses are self sufficient with 40 acres and ponds but we have 4 dogs that have to be let out. So a 2 hour drive both ways each day is rather inconvenient. Overnight while in the hospital is no problem but I've read that you have to be nearby for some time for labs and the like. It'll be one thing I bring up when I get the appt.

[Alfredmynewkidney]

I know with my team I actually had to have 3 people sign that they would be able to bring me to my appointments. I live about an hour from the center and had to go back 3 times a week for labs and then 2 times a week ... and you can't drive for about 6 weeks. This also depends on your recovery. Our center also has a transplant house for people to stay that live further away. I do not know if you have to have someone stay with if you stay there. The appointment will be great and answer all your questions. My appointment was several hours long because you meet with so many people.

[LisaSnow]

Alfredmynewkidney is right that you must have a care taker to be with you after discharged from the hospital and drive you to the center two or three times a week. I would start looking for additional "driver" now in case your husband can't get away from time to time.

[horsie63 in reply to LisaSnow]

What about Uber? I intend to stay at a nearby hotel. He should be able to be there during the day but overnight might be another story.

[LisaSnow in reply to horsie63]

I think if you explain it to the team they should find a way to OK it. However I know they prefer you have someone staying with you at night even in a hotel.

[NoCaGirl]

My transplant was out of state. My husband was with me for 3 days while I had surgery & was in hospital. He had to fly back home to work & my sisters each stayed with me for 9 days. After this 3 weeks, I was alone ( in a state a 5 hour flight from home). I was very healthy & did ok. For clinic appts during my 6 weeks there I either took Uber or had a local relative drive me.

Now 2 yrs later, my clinic appts are all zoom. If I were to have emergency there is a transplant hospital 2 hrs away

Altho not easy, being far from home & alone for 2 weeks wasn't even the hardest part for me. It's now- I am still isolated because of covid. My husband is the only 1 I see, he's great, but not very knowledgeable or empathetic about the meds & their effects on me. It's hard to tell him anything negative about my health ( meds have led to new issues with skin cancer, arrhythmia, GI issues) because he wants to know his gift of life was helpful & appreciated. It was.

[Gardner-NY in reply to NoCaGirl]

Hello NoCaGirl, Your reply that peaked my interest and I hope you respond back to me. You wrote that the isolation due to covid19 was very difficult to bear. I get it so much, and my spouse with his kidney transplant too. If you write back, you will be the first person I've found who 'gets it'. My spouse had his kidney transplant Nov 2018 and I 'm his wife and only caregiver. We have no family nor children where we live. All of 2019 was filled with so many assorted serious problems after his transplant and I worked full time at a college and he could do so very little physically the first 14 mos. Late Jan 2020 he finally had his first good blood labs, and then covid19 came. From around Feb 2019 to now, we have lived so isolated it is unreal. First we lived isolated due to his many health issues after transplant and then came covid19. He gets his 5th vaccine shot this week and I'm current with all my vaccinations, but we know Paxlovid won't work for him his transplant dr told us 3 wks ago if he ever got covid. I live with a bag packed 'if' I ever test positive covid , I cannot come home. I'd have to check in to a hotel for probably 2 wks. I am an extrovert and living so isolated for over 3 yrs for us has put me in my first life depression. It sounds like your spouse was your kidney donor. My husband since transplant has assorted medicine side effects that his doctors have tried to remedy without success. He has yet to have a good day of feeling good. We have not taken a fun trip in 3.5 yrs, nor had an yone inside our home or go into another friend's home, no restaurants, no movies, no museums, no vacations, and more. THe isolation is very difficult to bear at times for us and winter is 7 months long to boot. Write me back. I feel your heavy heart of isolation. I am so very sorry you are having side effects from the medications. I get it, I really do. I hope to hear from you.

[SadMad in reply to Gardner-NY]

🙏🙏🙏

[OperationKidney]

I didn't, and I don't recommend it in case something happens. Do you perhaps have a friend who could be with you, or another family member?

[Jepsos]

I’m 1.5 hours from my transplant hospital. I’m a widow with an 11-year old son, but my Mom lives next door. I came home after 3 nights in the hospital. I could bathe myself and make simple meals. My Mom would come over twice a day to do laundry, grocery shop and drive me to the hospital twice a week. The first three weeks were a tough long drive to and from the hospital. I would not have wanted to be in an Uber. Working around the farm may be an issue for the first year. You can’t do any gardening or clean up any manure or dog/cat fecal matter. Soil and manure has a ton of bacteria in it, and you will be very susceptible to infections.

I was allowed to garden wearing a N95 mask, dish gloves under gardening gloves. I shower immediately after coming inside. I wash my gardening clothes on hot water and hot dryer.

Good Luck!

[LavenderRabbit]

Maybe find someone who could look after the farm animals while your husband is looking after you.

[horsie63]

Perhaps my daughter can come in from ID. I have no family close by and no friends out here either. I do have a friend who lives near Tulsa so I may ask her. I no longer have a garden and the horses roam the 40 acres so there's no mucking stalls. My husband does the heavy work.

[Darlenia in reply to horsie63]

That's an excellent idea. If that falls through, perhaps consider boarding the doggies. We also live two hours away from our transplant center - it's not easy running back and forth to our home - the roads are snarled with traffic, fierce storms show up, etc. (I stayed at an on-site nonprofit hotel on our hospital's campus.) Everyone views a kidney transplant with jubilation. Truly, a transplant is a gift beyond all gifts. But it also involves major surgery and every system in your body is affected - cardiac, digestive, everything. During that stay in the hospital, lots of information is handed out, lots of pills must be kept in order, and more. You'll find an extra set of eyes and ears at the hospital as well as at home very valuable. And, here's a sobering fact, not all transplants go well right off the bat. My hubby's heart went into a-fib, a ureter leak developed (urine poured through his incision), and he acquired a drop foot. It flipped out world upside down for several months. So plan on having someone close at your side to serve as your eyes and ears (and transportation). On the bright side, most transplants do work out very, very well whether or not the start was smooth or rocky. I wish you a wonderful outcome and an amazing life ahead.

[Jayhawker]

I’m single, never married and have no children. I’m also the last person alive in my family.

So, I’m relying on a group of close friends as well as an in-home group, Visiting Angels, post-transplant.

I’m still working. I’m fortunate to work virtually full time from home. One of my colleagues from work, and a close friend, plans to come to my house to work Mon-Fri. She’ll be there to take care of laundry etc. She’ll also transport me to/from post-op appointments.

Ive got 3 other people who have agreed to transport me to/from post op appointments as needed.

I have another friend who lives out of town who will come to stay with me on the weekends the first few weeks.

It’s overnight that has been my challenge. I’ve contracted with Visiting Angels for Mon-Thurs overnight the first two weeks I’m home. That contract can be extended if needed.

However, there are a few widowed women from my church who may come to stay with me overnight Mon-Thurs instead. Since I’ll receive a deceased donor kidney, it’s impossible to know when the kidney will come. So, Visiting Angels is my backup in case the women from my church are away visiting their children and grandchildren.

My strategy? It takes a village to help a person recover from kidney transplant surgery. So I’ve got a transplant transportation team, a transplant in home recovery team, and a transplant overnight support team with backups for each. And my fail safe is the in home surgery recovery program from Visiting Angels. I just hope I’ve covered every base!! And, yes, my dog will be at the kennel for a few weeks…

Jayhawker

[horsie63 in reply to Jayhawker]

That sounds like a great plan. Where I live there's nothing like that and I don't attend church. With 4 dogs I can't find a kennel that will take them not to mention the cost. I'll make it work when it happens, one way or another.

[Darlenia in reply to horsie63]

Where there's a will, there's a way. You'll receive around-the-clock care the first few days you're in the hospital so that frees up your hubby a bit. (Not many people have visitors all day long - they come mostly in the evening.) The problem is you don't know when you'll be called up for the kidney so it's hard to lay firm plans in many ways. Perhaps you can find teenagers or pet sitters in the area willing to keep an eye on the pups and horses on short notice. Social media (Facebook, Nextdoor, etc.) are great ways to reach out and find people. Please let us know when you get that kidney!

[paro_julie]

Hello, I had my transplant in 2020 during Pandemic. No family , visitors were allowed in the Hospital no matter how critical patient was. I was all alone 15 days in the Hospital! Went through Transplant and two follow up surgeries to clean up internal bleeding. It was rough, but I made it alone. Due to the critical situation I was in the Transplant team took good care after Surgery 3.

Post surgery, my friends cooked food for us ( Family of 3) and left at the porch. My husband helped me with showers etc. But for the most after a week at home I was self sufficient. Even did stairs twice a day

[Bunkin]

I was over an hour away and due to Covid at the time, my husband was allowed only the day of surgery to be there then just to pick me up the day of release. We have dogs too so it’s always something we have to figure but no big deal for us.

[ILMA54]

Every transplant center is different in how they handle the weeks and months post-transplant. Since I live ~ 3 hours from the transplant center, they arranged for home health care to come to my home twice a week for the first month (I got my transplant last July). Similarly, once I started on one blood test per week for the next two months, I also had those drawn at my local lab.

Relative to appointments, my wife took me to the first appointment 2 weeks post-transplant. Similarly, my mother-in-law took me to my appointment 4 weeks and 6 weeks post-transplant (I had to come back at six weeks because I could not urinate when they removed the stent, so I had to use the leg bag an extra two weeks).

The hospital handled setting up the Home Health Care nurses for that first month while I was in still in the hospital (I was only in the hospital for 5 days).

[josie120]

Horsie,

I had my transplant during COVID in Jan 2021. I got dropped off at the front door of the hospital. No one was allowed in with me or to visit. The tests that needed to be done before the surgery kept me busy and didn't leave much time for thinking or worrying. By noon that day my surgery was over, by 6pm I was back up in my hospital room. I mostly slept between doing what the nursing staff asked/made me do. My husband picked me up at discharge on post op day 4.

The first week home I slept a lot, got up to pee every 30 min and took my meds. He was able to work from home and drive me to my weekly appointments for the first month, then every 2 weeks for 1 month then every 1 month until I went back to work 4 months post transplant.

There was no option for things to go another way because of COVID restrictions.

Before the transplant I met with a social worker who asked me to tell her who was going to help out after the transplant. I hadn't thought about it as I am usually independent, and don't have family close by. I let my neighbors know what was going on; they were very generous with meal prep and grocery /pharmacy runs during my initial recovery.

Since the 4 month mark I've been back working full time and an NP at the Children's Hospital. None of my transplant providers would sign / write a letter for me to stay home/work from home. It was stressful at first but as days went by without any COVID trouble (despite exposures) it got easier.

2 weeks ago I found out I have not responded to any of the 4 COVID vaccines, and have a very low CD4/ T cell count. Because of this I'm still on the pneumonia prophylaxis and I finally got ok'd to get Evusheld.

Evan though Im 1.5 years post transplant I still wear an N95 at work and everywhere outside of my home - and even at home if I'm working in the garden/dirt.

All my COVID (PCR and home tests) have been negative despite known work exposures. Sometimes I wonder if I'm being too cavalier about being out and about /at work but no one on my medical team seems worried or is advising me to do anything else. I guess they all are confident that wearing the N95 is protective; so far that's been the case.

[Alfredmynewkidney in reply to josie120]

I got the Evusheld after getting 4 vaccines with no antibodies. I did have antibodies after Evusheld. I had my transplant 4/20/20. I went back to work after 12 weeks. I am a NICU nurse. I go everywhere. But do wear a surgical mask. I am careful but not strict. I do not take care of COVID patients so I'm lucky there. But I'm sure I've been exposed. I hope you get evusheld soon!

[BabyTee]

Check with your transplant contact person. Every hospital is different.

I live in California and went to a Sutter hospital for my transplant. I live 2 hours from my transplant center and I get my labs drawn at a Sutter lab in my hometown. They only required I be within 4 hours of the hospital at all times for the first 3 months. I went home right after discharge.

My "support person" had to be at the hospital for my discharge day where they went over meds and care stuff. They want your "support person" to make sure you know how to fill your pill case properly. The support person is supposed to verify for 2 weeks that you are checking your temperature, blood pressure twice a day, as well as your blood sugar and weight daily. You won't be able to carry your own bags if you stay nearby, so the uber driver would have to carry bags for you. You can't carry anything over 10 lbs for 6 weeks or so, depending on how you heal. You will need a scale to weigh yourself daily.

It would be nice, though, to have someone who could come by and see you every day, to walk with you through the halls of the hospital and fetch water for you. Check with the hospital rules for visitors. I was allowed up to 2 visitors that both had to have the first 2 covid shots.

Also, all of my clinic appointments have been via zoom or facetime, so after discharge I only have to go back to get my stent removed from the bladder/kidney connection at about 8 weeks, unless some problem arises.

[Estrea]

I had a kidney transplant and recovered alone in my apartment for a month. A nurse came every few days and took my blood pressure and such but I really didn't need her. A neighbor went shopping for me once and so did my brother who changed the cat box. My neighbor also came over every day to scoop the poop from the cat box. I did fine. I was so happy to have my transplant!