Struggling with being a good caregiver to my husband of 35 years. My expectations of what life would be like after transplant were too high. Everyone kept telling me as soon as he gets the new kidney he will be a different person.
All I see is a person wrapped up in a blanket appearing to be totally out of it, no energy to do anything.
Please help is this normal?
Dear Kristis,
Is this 'Normal'? you ask. If I said YES, I would be telling the Truth however, if I said NO I would also be telling the Truth.
The first question, I have to ask, is How Long Ago did he have the Transplant. If your answer is Six Weeks, then this IS entirely Normal. At Six Months, maybe ask to see a Consultant- if he is not seeing them already, that is. If it's six YEARS....he has a PROBLEM!
Another question, I feel I should respectfully ask is, how 'High' were your Expectations? If you imagined, your Husband, would be running a Marathon FOUR DAYS, after Transplantation Sorry.....If this IS, closer to, four years after then yes Perhaps you could, reasonably expect, an improvement- by now.
I'm going to Stick My Neck Out Here, please forgive me if I'm wrong.....I get 'The feeling' that you are 'Expecting' Too Much, Much Too Soon. I suspect that your, poor Dear Husband, has been Home about Three weeks and, without being too impolite, you are expecting him to Mow The Grass...maybe an analogy too far but you take my point. My own Dear Mother, who took me Home- with her- 'Pushed' Too Hard, in my Early Days. I Ended Up in TEARS, just from her EveryDay questions. If I sound like I'm 'Defending' your Husband, Too Much, I'm Sorry- it's just that I know how he is Feeling (OK not Exactly but 'Close Enough'). Kidney Transplantation is fairly MAJOR Surgery, on a Scale of 'One To Ten' maybe Six, even Seven. It's not like having a Whitlow removed, where you have, a Sore Finger for a couple of weeks.
Sorry to be appearing to 'Tell You Off' Kristis, that is NOT, my intention at all. I'm just- having been through a Transplant myself- gently suggesting, that you, give Him TIME. Time to Heal, Time to get 'used to' the Medication (if you Look Up the Side Effects, tiredness is the LEAST of them). Time to 'Find' himself, Time to Come to Terms with Everything. YES the Dear Lovely Man LOVES YOU Kristis, more than he can tell you- especially at this time.
If you really want to Help your Husband, and I believe to genuinely do, then (carefully) put your arm around him, tell him that you love him and then ask him....what he wants for his Tea. These, apparently small, acts of Kindness WILL help to re-assure this- genuinely Frightened- man.....Yes, you DID, read that right. Despite ALL the literature, Doctors/ Consultants re-assurances and all, I can ONE HUNDRED PERCENT GUARENTEE, that he is 'Shit Scared'....SO WAS I! Love Patience, and TIME, is what he needs- NOT someone with a Clip Board and Stopwatch.
I genuinely hope, that you, realise that my intentions ARE 'Honourable' and that I did NOT intend any offence. My Prayers, and Love, are with you BOTH- I will offer a Prayer, for you, both Privately and in my Church. May, the Love, of God be with you both. May HIS Love heal you Both...Amen.
AndrewT
I am 8 months post transplant and have gone through so many different stages. My first two weeks my son stayed with me and as week as I was my son was a drill sergeant. I was grateful because he had me sitting up and walking. Each day I was getting stronger. I could have easily been a couch potato and at times I was. When I started to get out, shop, walk, I felt so much better. It’s a process, but please speak with the transplant team and don’t give in. He needs to get up! Baby steps! Hang in there!
Thank you for your response, good luck in your recovery
Andrew, you are exactly correct in everything you say. He is only 4 weeks post surgery, everyone kept telling me he will feel great, so was expecting that. He has also gone through 6 back surgeries and really did not have many issues. For me, it is hard to remember he had major surgery because you "can't" see if. I try extremely hard, everyday to be compassionate.
Good luck to you in your recovery
Hello Kristisparks, I too would love to know how long ago his transplant was. That tells me a lot about why he is acting the way he is. This week 11 months ago my spouse had his transplant and the first 2 months were great, he had energy and used my treadmill. The past 9 months have been grueling for us both. He is having major /serious blood chemistry problems. Took 7.5 mos for the hemoglobin to go up above 10 (it was stuck at 7.4) and now this week at 13.5 (yeah!!), but since Aug. white blood count is severely low between .51 and 1.28 (low end of normal is 4.5). The answer to fix this has not worked yet. We celebrated our 42nd wedding anniv this month and due to white count and the CMV virus he now has since Aug (getting better), we couldn't take a trip already paid for to our timeshare for a week, so I went to my job. I think I do well at being super supportive of him and know that he is doing all he can being on 20 different meds a day and dealing with side effects. The new kidney is functioning well and we're thankful. It is just taking a long long time for my husband to be "whole" and take a walk outside with me in the park just for fun. I see a counselor to keep my sanity of doing 'everything' he cannot do and has no business doing. Give him lots of gentle /not smothering support. Watch funny movies together and know that how he feels is bothering him worse than it bothers you. You are a wonderful person to be by his side through thick and thin and one day (don't know when), this will be a journey you both have grown closer by. HUgs to you both!
Thank you for your response, I wish your husband continued health. My husband is 4 weeks out
Don't forget that just because he had a transplant it still takes time to adjust to his new medication routine. It took me nearly 6 months for my body to get used to the immunosuppressants and the 3 different antibiotics I was on. My dose of my immunosuppressants was changed several times too. Four weeks is not long if you are expecting some miraculous recovery.... Also, because of the new meds he is still healing from the surgery.
I always suggest that you also tell his transplant team about his lack of energy. Maybe one of his drug doses needs to be lowered. I take it he is having his blood levels checked?
This whole process post transplant takes time, and 4 weeks is NOT enough time.
It does get better. I went back to work full time when I passed the year mark. I am now 20 years post transplant and have a wonderful life filled with grand kids and travel!
Have patience...
I am happy to hear that you are doing so well, continued happiness and success
Struggling for her life 
Struggling with 16 yr transplant
Steriods causing rage and anger
hematology oncology appointment tomorrow-stressed
My brother needs a kidney and advice
