Roid Rage!

[transwife]

My husband had a kidney transplant 3 months ago and the past 3 months have been very difficult for me as a wife and caretaker because of his irritability and short temper, which I am attributing to the Prednisone. The dosage has decreased quite a bit, but this still seems to be an issue. Has anyone else experienced this and do you have any suggestion for coping with this .

[Dara3351]

I was on prednisone 10 mg for awhile and my symptoms were I was always hungry! I complained to the transplant team and my mycophenolate was increased back to 750 mg twice a day. While I was on prednisone it was 500 mg twice a day. I didn’t have irritable symptoms but everyone is different. Talk to your transplant team and ask questions. You have the right to your meds. My Doctor wanted to put me on some fungal medication and when I saw the side effects I told him no. I am not taking that medication. One of the side effects I was having was these episodes of vomiting at 5 months. Well 4 months later I ended up having my gallbladder removed. Now I feel absolutely the best! I can say that most transplant patients go through a lot of emotions...it’s a major operation and it takes time to recover. Sometimes depression kicks in, worries, guilt,etc. Hang in there, but perhaps medication adjustment is needed. I know after each blood draw my medications were sometimes changed. Make sure to talk to the transplant team, they are there for you!

[kimosabi1961 in reply to Dara3351]

Prednisone makes me hungry too, I constantly am fighting weight gain from eating too much

[Transplant2018]

For the first month after my transplant, while I was on relatively high doses of prednisone, I was very emotional and was sometimes mean to my husband. I then immediately felt absolutely awful and guilty because my husband was doing everything possible for me. We kept saying "it's the prednisone" but I know it was hard on him to be treated this way by me. Fortunately these mood swings went away once I was reduced to my maintenance dose of .5 mg.

[WYOAnne NKF Ambassador]

Make sure his transplant team knows of his irritability, etc. despite the reduced dose. There are some people who cannot tolerate even a low dose. Ask questions and be his advocate.

[dolls1014]

Yes, my husband's transplant was 15 months ago. After the transplant he became so irritable. It seemed like his personality had changed. Everything I did was wrong. It took 10 months before I started to recognize my "old" husband. Things have gotten much better but now he has shingles.

Hang in there!

[kimosabi1961]

I had a transplant a year ago, currently on 5 mg Prednisone a day and I am still sometimes easy to anger. Thankfully my wife has hung in there and put up with me.

[Tri4life in reply to kimosabi1961]

Same here! I had my yX 5 years ago. My personality def changed with the prednisone. Unfortunately I am very sensitive to the prednisone and still struggle with irritability. Ugh.

[AndrewT]

Dear transwife,

Yes, I'm quite sure, that Some, of your Husbands behaviour, IS 'Down' to Medication. However, and you can take My Word for this- Transplant July 2013-, most of it from Stress. Not necessarily psychological 'Stress' but, actual Physical Stress- his Body has had Major Surgery! Your 'poor' Dear Hubby is probably- almost certainly- feeling quite 'Confused', at the moment too. Let me explain....

Your Hubby has, as I said above, had a Serious Operation....he has had, part of, Someone Else ADDED to him, quite probably a Dead Someone- a kind Someone, who wished to help others…. Trust me, quite apart from, any Physical 'discomfort' this IS a VERY Big Deal! The Thought that 'You Are Well, because of another's generosity, is actually Mind Blowing- if you dwell on it, too much. Can I ask you directly, have you actually, Tried to, 'Talk To', your Hubby? Maybe put him, in your arms, and 'Let Him' cry? Believe me he wants/ needs to!

You see, when a Transplant 'Comes Up', it all 'Happens' Very Quickly. Day 1 you get the 'Call', arrive at the Hospital, maybe have some Dialysis- I did- and are then Transplanted...That day. Day 2, you are in a Hospital bed, with Tubes Everywhere- even one into your 'Willie'. (equivalent, for a woman). Day 3 you are Got Up, maybe 'walked' a little and then sat in a Chair- this is Awful, REALLY unpleasant and Everyone is 'Too Busy' to help you back to bed! Day 4, you get to your feet....actually rather uncomfortable, even Painful, but WONDERFUL! By this Stage, many of the Numerous Tubes, have 'Disappeared' too. Over the next, few days, your are Actively Encouraged to walk about the Hospital, walk around the Outside and- with a little Supervision- climb the stairs. Often a 'Biopsy, of the new Kidney, is required...a small operation, followed by, some hours- laying flat- in bed. (this can seem, like a, bit of a step backwards- at the time.) If 'All Goes Well' you are Home, in around, Ten Days. Two weekly 'check ups', reduce to once weekly, once every two weeks.....

So do you now understand why I only attribute, Some Of your Husbands 'Behaviour', to Drugs? I know that you have, no doubt, read ALL the Literature, regarding 'Kidney Transplantation'.....it DIDN'T 'tell you' ANY of this, did it? The literature tells you How, a Transplant is 'Done', Where the Connections are made, The POSITION the kidney is placed and so forth.....NOT how, the poor man, will FEEL!

From the bottom of, MY heart, can I ask you to....Give, your Husband TIME, LOVE and UNDERSTANDING....Especially TIME. Yes he may, very well, be 'unreasonable' on occasion- Stubborn, apparently Uncaring/ Bloody Minded, He might Swear and 'Flounce' around....Yes he, VERY WELL, Might! However, with your Love and Care, he might begin to...Get Back to 'Normal' too! In Six months, he might NOT, do this...As Much. In Five Years, YES it's Better...In Twenty Years....Yes TIME, lots of it. I know that this, does sound, somewhat Daunting....To say the least.

However you are ALREADY, quite far, along The Road to recovery. Your Husband is Home, is apparently 'Doing Well', is Responding to Treatment- hence your original question- can clearly 'Go' without a problem..... Can you not 'Tread Carefully' for a while? Maybe be a 'Sounding Board' for a bit? Perhaps just let him 'Rant' a little?

In the Quieter Times, your Husband, WILL 'be there' still- I know this to be true. At These Times just 'talk' to him but also, be prepared, to listen- maybe quite a bit too!

Please DO 'Feel Free', to contact, Any Of Us again transwife. I hope that, my words, have been of some help- if I haven't 'Frightened You Sh.tless!'

Sending you ALL our Love

AndrewT

[transwife in reply to AndrewT]

Thank you for the advice. Yes, they don't tell you about any of these things prior to transplant. And I realize medications effect people differently. I am trying to be patient.

[LisaSnow in reply to AndrewT]

Poor thing you know someone in hospital for over one week after transplant? I was discharged on the 4th day.

[Cdrmps]

I had my transplant about 5 weeks ago.

Years before I had been on fairly high does prednisone - 70mg - my behaviour then had been awful but I had no real awareness of it. My whole family was at their wits end with me, whereas I felt victimised. The situation was so bad it nearly broke us apart. I couldn’t understand why they saw me as so changed and, even when I could recognise my irritability, felt upset that they wouldn’t cut me some slack. After all I couldn’t control it and put up with similar behaviour from my wife ever month.

After transplant I started on 10 mg prednisone. My son asked straight away if I would be on steroids when I got home. This was upsetting as I was feeling prejudged. And yes I was short and irritable at first. But this time I was able to see I was also suffering extreme physical stress, acute anxiety: worrying about rejection, guilt that me rather than the back-up candidate was given the kidney, insomnia from the steroids and exhaustion. I thought it inevitable I would be different in behaviour.

My wife was feeling extreme stress about the burden on her from feeling responsible for me and our relationship shot the rock bottom within 24 hours of discharge.

Please don’t take your husbands behaviour personally. He is probably too consumed by his own challenge to be able to see things from your perspective. Try and keep feedback factual and immediate. Try and build his self awareness with gentle questions “how do you feel about what you said/did just now?” “I understand you must be feeling all sorts of emotions right now, will you tell me about them?” And as the previous poster said, give him a cuddle let him cry it out and feel reassured you are still there for him. It’s a lot to ask but with support you will get your old husband back.

[LisaSnow]

I am the patient and I remember how rude I was to the hospital nurse right after the surgery because she was restricting my water intake lol! I don't think my personality changed on steroid, but I was firm about coming down the dose very quickly. Anyhow, as the medical team lowers his dose it will help your husband get back to his old self soon. Hang in there!

[Hidden]

I experienced the same thing after my transplant and for the longest time I did not know what was happening. Finally, a social worker told me that prednisone can cause mood changes and severe rage episodes.