Desperate for answers

[Hairme]

Husband still have mental issues after 6 months from having a kidney transplant. His personality go from one extreme to the next and he makes a strange humming noise and he says he cannot stop it and does not have any control over his moods and believe me he can be very unbearable at times. He has come a long way since being in the hospital for 4 months. It is difficult enough in dealing with the labs and and changing and adding medication. He is in physical therapy still since his strength and endurance still not there. Is there anyone dealing with a situation like this? He also has sensitivity to noise but it is noise like washing dishes, talking, tv etc.

[chicago17]

hi I had mood swings & couldn't stand noise my doctor told me the mood swings were down to the steroids I'm off.them now I'm 4yrs post transplant I feel OK now . I think some of the meds have a lot to answer for I hope your husband feels better soon & his mood lifts our bodies have gone through a massive change 4 months is early days

[LisaSnow]

i am very sorry about the stress you must be feeling as the caretaker. Are you able to take good of yourself too? If I remember correctly your husband is an older gentleman with other existing and serious health issues? Six months out is still very early in stabilization of the transplant so more med adjustment can be expected. While it is likely his mood swings and other psychological symptoms are due to medications, and you should let the transplant team know, pleasealso consider having him seen by a mental health professional. This way if these symptoms reflect any organic issues they can be treated quickly.

[Hairme in reply to LisaSnow]

thank you Lisa. Unfortunately the healthcare professional are not quick to associate the symptoms to the medication but I will revisit this subject with them. Very difficult to take care of myself but trying hard. Slowly making my husband to try and be more independent.

[Match62017]

I’m sure you’ve discussed this with his transplant team, if not that would be the first thing I’d do. When I was on a high dose of prednisone I had mood swings and would get a vibration in my body like tremors but they didn’t always show up on the outside so I was afraid to mention them. Once they lowered my steroids (Prednisone) I felt like I was back to my usual self.

[PeaceTrain]

My husband went through a similar personality change.

I suggest that you attend all post transplant doctors' visits and speak up kindly about your husband's behaviors, especially if he minimizes this problem or is unwilling to share this with the transplant team. They can review all medications, and give feedback. So many transplant recipients go through depression and /or anxiety, it helps to get it out in the open and work on it together.

If you have a primary doctor or at some point a psychiatrist involved who wants to prescribe medication - that should be weighed carefully and ALWAYS approved by the medical transplant doctor before taking.

My husband didn't want to seek counseling so I decided to get individual counseling for me. I found a great therapist who helped empower me to address my own needs, my feelings, ways for me to cope and communicate more effectively. Making changes in myself led to a better relationship as a couple. It takes time and perseverance. It may take some work finding the right therapist, I may add.

It might be that if your spouse's mood changes are medication/tranplant induced, what I'm suggesting won't help or apply to you. I'm only explaining my experience.

Also build a stronger support system for yourself and hubby if it's lacking. This all works to help your husband, too, as he gains more respect and confidence in you and hopefully himself.

My SO's mood and behavior changes have resolved and I'm a Caretaker who also takes care of myself!! Best of luck, Hairme!

[Darlenia]

My hubby received his transplant at age 71. He didn't have mood swings but he did get a drop foot and a-fib a couple of weeks post transplant. Looking back, I suspect he actually incurred a brain bleed while on the table. I say this because his drop foot led to a fall that then led to brain surgery. (The CT scan showed an old brain bleed with breakthrough bleeding.) After the hematoma was vacuumed off, all his problems disappeared. Brain bleeds often occur in older people on blood thinners such as aspirin, eliquis, etc. There's simply no time to wean these patients off of them when a kidney match is made. So, if your hubby was on a thinner and never had mood issues before transplant, it might be worth a consult with a neurologist should this situation persist after his immunosuppressants are stabilized. Although I mentioned blood thinners, brain bleeds apparently are also higher for those with blood pressure issues, polycystic kidney disease, diabetes, and so forth. While my hubby's brain bleed resulted in motor issues, other bleeds can create mood disorders. Hope your hubby is back to his normal self soon!

[Hairme in reply to Darlenia]

Darlenia

My husband had a seizure right after his transplant. He is currently on seizure medication and is under the care of a neurologist. He was on blood thinners while in hospital but just taking baby aspirin now.

[Darlenia]

I assume your neurologist did an MRI or CT scan on your hubby. And if that was done, it may be worth doing another set. After my hubby fell, a CT scan showed absolutely nothing. He was warned that there could be delayed effects and was sent home. Well, about two months afterwards, he suddenly lost his motor functions, followed by a mental decline, etc. I swear he had a small bleed on the transplant table that went undetected throughout everything. Because following the second CT scan and after all the blood was taken off, all of his issues that he had shortly after his transplant as well as those following his fall disappeared. I really think, now that you mentioned your hubby was/is on blood thinners and he had a seizure following his transplant, something happened there too. My hubby's thinner during transplant was baby aspirin, too. I'd ask for repeat scans. I suspect there are hidden teeny tiny bleeds that may now have surfaced and also I suspect that different radiology folks may read the scans better than others. I do know that our neurologist despises blood thinners. He wrote to the entire transplant team as well as his cardiologist to stop using them on him. He blamed the thinners for his hematoma. But your hubby isn't my hubby and treatments are tailored to each person's needs. I truly hope you and your hubby find answers. It's hard when people shrug and simply say "it is what it is".

[Parkerbarker]

well i was very mood swingy the first 2 months and snapping at my husband(dont know how ge put up with me) but much better now pred dose only 5 mg per day.Super tired but tacro dose was way to high and dr not monitoring almost wrecked new kidney

[LisaSnow]

Caretakers are not just heros but also warriors. Their own needs are often unmet which can lead to burn out. I hope those of you in this role take time out of your day for yourself and take good care of yourself.

[ChristopherW]

Hairme, that's sounds really rough for you.

Can i ask, is your husband on prednisolone? And if so , is it a high dose.

I have been on it 41 years.

I have also seen many transplant patients on it and discussed it with many Doctors.

Prednisolone can cause huge mood swings.

It may be that as the dose declines, his moods stabilise.

If not, then maybe even having the above explained to him may help him to understand how he's feeling.

If he's not on a corticosteroid, then my apologies, this has been of little use.

[Hairme in reply to ChristopherW]

Yes 5 mg

[Jayhawker in reply to Hairme]

I’m on 5mg prednisone too and am definitely more anxious and easily upset than usual. I’ve yet to broach this issue with my team as they’re struggling to get my CMV in check. I don’t want to sidetrack them from that at this point. However, I plan to bring it up to them in the near future. I know they won’t lower the dose now as they’ve just pulled me off Myfortic to try to get the CMV in check without using an anti-viral Med. So prednisone and prograf are all that’s protecting the kidney from rejection right now.

Jayhawker

[littlelinda50]

I am on prednisone for life unfortunately 5 mg a day and I have mood swings. I do my best to control them but it's hard. I want to drop it down to 2.5 mg but my doctor is fighting me about it. It was a doctors mistake that got me on it so they should be willing to do everything they can to at least lessen the dose. I hope you find answers for your husband. I do know seizures can change someone's personality and mood. Hugs