Post transplant emotions

[sandi615]

I am 3 months post transplant and I am feeling really good. I am so grateful for the donor and my transplant team. I am also struggling with emotional issues that I just don't understand. Is it the meds? The stress of surgery? Any help would be appreciated.

[kidney40]

How emotionally are you feeling? is it that you want to eat quite of food while still not

able to be active? is it cause you want to be active however post surgery will force you

for awhile to take things slow. Do you feel emotional cause you were advised to stay

away from crowds for a while after surgery? YES! You will feel emotional even though

you were granted the gift of extended life. CHIN UP! You will learn patience if you have

not done so yet. Patience! Your emotions will settle down over the first couple of

months post surgery. You are not alone in this feeling.

Kidney40

[sandi615 in reply to kidney40]

My kidney function was so low before surgery that it has taken me a while to get back to normal. I seem to react a bit emotionally when I am tired or unable to get out. Thank you for your advice.

I am very grateful for my new kidney and the extended life I have.

[blackkat2]

I have had emotional/psychological difficulties, too. I assume it's partly the medications, partly the huge stress/change you're body is going through. It's the hardest part, for me, of this whole process (so far), because it's the most difficult to articulate, which makes it hard to get the right help or council. Frankly, I feel like I'm adjusting not just to a new organ but a whole new body, one that I don't know at all, because everything is different: my metabolism, my hormones, my rhythms, my appearance--everything. I'm 7 months post transplant and all I can tell you is that I'm gradually learning how to deal with it in a more rational and less emotional way.

[Match62017 in reply to blackkat2]

Galfieri, you are the first person that has mentioned they feel like they are in a whole new body. I mentioned that to my doctor and he looked at me like he thought I was joking. Everything from my hair to my hormones has adjusted.

I've gained a lot of abdominal fat and loss muscle and have issues staying focused and on track.

What are you going through and how are you handling it?

[blackkat2 in reply to Match62017]

Though I'm eternally grateful for the gift of a new organ and a chance to get off dialysis at least for a while, it's been a really hard few months since transplantation. As I said, I feel like a different person and becoming a new person is really hard. I don't sleep well, I'm anxious all the time, near-obsessive-compulsive, the weight gain means my clothes all feel different and my relationship to the world around me is different. No one prepared me for this sort of tectonic psychological shift.

How about you?

[stephanie904 in reply to blackkat2]

I too was not informed of all of the side effects of the high doses of prednisone. Even the 5mg per day messes with your emotions.

Yes, the hospital that I had the transplant done at did have a pretransplant class for ppeople that had been activated on the transplant list. We even got notebooks with a lot of usefil info to take home.

My boyfriend & I went to the class & we thought we were being informed of most everything.

But looking back I wish they had told us of the side effects of prednisone.

When you start on the super high doses you're in the hospital & don't get the "side effects paper" that you get when you pick up a prescription. You just take what they tell you to take.

I wish they had included the prednisone in the class &/or notebook.

Best of luck on the days to come.

[Match62017 in reply to blackkat2]

I'm extremely grateful, however it does come with adjustments some I'm still dealing with after a year.

I gained 20lbs. my hair thinned out for the first 6 months, but thankfully I had thick hair and it is now growing back. I'm also having anxiety especially with worrying about getting sick, but have improved especially in the past few weeks. I had a cadaver donor and think far too much about them and the ones who they left behind even though I know nothing about them. I'd have to say my first six months were a struggle getting adjusted then before I knew it things started to feel normal again. Well, everything except the medley side effects, an occasional anxious feel if someone coughs or sneezes and my body I'm still holding on to the weight, but honestly haven't committed to doing anything about it. Hang in there If your situation is anything like mine you will have good days and bad, but tell yourself what I started telling myself.

"These things are a small price to pay for being alive. "

[stephanie904]

I'm 3 yrs post transplant as of this past Aug 1st. The prednisone is very hard on your emotions. It's worst when you are on the higher doses.

I dealt with some depression before transplant, but it got worst post transplant.

I've been on the lowest dose of prednisone (5mg) for quite a while. I still feel the effects of it now. Quick mood swings too.

My transplant went awesome, but my back became worse during surgery. Do to being overweight they had to twist me quite a bit to get the surgery completed. I had a bad back previously, but it's so much worse now. I haven't been able to get back to most of my activities either due to the horrible back pain.

So my emotional changes had extra reasons as to why they changed.

You're emotional change is most likely due to the prednisone.

Your transplant team most likely won't treat you for this.

Please talk to your PCP about it. Maybe they can help you out.

I'm thrilled your new kidney is doing well. Yes, the new kidney is a very special gift. A gift like no other gift you can recive.

Best of luck on your new journey. 🌞

[WYOAnne NKF Ambassador]

Hi sandi615! I am almost 19 years post transplant and I think that a lot of the emotions you are feeling are pretty common. It took a while for me to adjust to the meds I had to take daily. I think the big culprit in all of this are the steroids. I know I was on a pretty hefty dose of prednisone at first. I don't know what your dose is, but my transplant team was able to decrease my dose during that first year to 2 1/2 mg. Things got a lot better for me after that.

Make sure you let your team know your issues. I think it's important for them to know how you are doing emotionally as well as physically.

Take care of yourself and let us know how you are doing.

[Drdetroit]

After adjusting my cellcept because of BK virus coming back after 6 yrs by my transplant Dr. I am convinced it is what affects my emotions, forgetfulness, etc, since it is now increased due to BK being gone. I'm sure the prednesone doesn't help. It sure makes you hungry & raises blood sugar.

[sandi615 in reply to Drdetroit]

Thank you, I do think that the prednisone is the biggest issue for me. Thank you for your input. Having experienced the same feelings is validation that I am not that different.

[Drdetroit in reply to sandi615]

Sandi,It took me 1&1/2 years to write to my donor's family, because I was too emotional. The family was elated to finally meet me as I was the only one to contact them. It was great meeting the family of the 36 yr old mother of two { my donor} I even went to my donor's daughter's wedding. Part of her mother lives in me, & I still get emotional sometimes. Oh by the way, I dislike the prednesone too. Good luck to you.

[Match62017]

Hi sandi615, I had the same thing happen. I was fine the 1st month and then I suddenly couldn't stop thinking about my donor, my donors family and my kidney.

That turned into feeling like my life was never going to be the same because at this point I was in the house a lot and still in my mask for a few more months due to white blood cells being low. This may sound odd, but I started writing letters to myself then writing responses as if I was giving someone else advice and it really helped me. It felt as if I was able to vent to someone, but before I did this I spoke with my transplant team and asked if my emotions were normal for what I had been through. Please be sure to talk to your transplant team, they know how and when to guide you. If by chance you are having thoughts of harming yourself call them immediately! and make sure you talk to someone don't accept a call back. That's one of the many things they are there for.

It gets better and before long you will feel like your old self, only better.

[sandi615]

I too was having to stay at home because of a second surgery and infection. It is hard for others to understand that our body feels so different than before transplant. I too have lost muscle and find it hard to focus.

I am finding that talking things out gets me out of my head and helps me to be more positive.

Take care

[Cat0507]

Hi sandi615 I'm 7 months post transplant and have felt similarly especially with that idea that I suddenly have a different body. I agree that it's certainly partly the medication but such a sudden shift in how you are feeling is disconcerting. So many people have said to me "now you can get back to your old self" . I've been ill since I was 13 (I'm now 38) so I have no idea what my old (presumably healthy) self is. My renal unit referred me for counselling and this has really helped. Perhaps that might be an option?

[booka89]

Hello Sandi615,

I am 28 yrs old and 2 month’s post transplant and just now getting to where I feel some relief from the turbulent ride post transplant.

Last month was the worse, emotionally and physically. It would be very helpful if the pre-transplant team would talk about the side effects. Going in I knew a lot about having to miss work, and expecting to take drugs for the rest of my life. No one tells you about the constant battle of medication side effects, random physical side effects, or the emotional.

Some of my weirdest side effects have been the numbing of my left thigh. My thigh was numb to the touch. It was the weirdest feeling and it wasn’t until I spoke with the physical therapist who came to check in at the hospital that I found out it was because of how much tissue and muscle they cut through and that it would eventually go back to normal. When I touch my thigh now I can feel it like normal but there is still a “different” feel to it than my other leg.

The other is my hands and bottoms of my feet have a hard time adjusting to temperature changes. When I wash my hands, or step into the shower, I exeperience the weird sensation. It’s like after playing in the snow and you run your hands under warm water. The tingling sensation.

Anyways, long post to say it is such a huge change our bodies are going through and each day we must face the challenges and trials with a mindset of how blessed we are to have a second chance at life. Keep posting and reading these entriesthat other people have written. They’ve helped me so much with my recovery.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." ~ Isaiah 41:10

[sandi615 in reply to booka89]

Hi booka89,

I too had the numb feeling in my right thigh. I was told that they did a nerve block on my right side. Still feels different. It would be great if the team would address the side effects of the meds and the emotional effects of your body feeling so different. After years of being careful of what foods you eat and what meds you take, how much fluids you drink you now have different rules to follow. It can be overwhelming. I have been able to talk these things out so it is getting better.

When I feel overwhelmed I remind myself that I can do all things thru Christ who strengthens me.

I'm also appreciative of all these posts from other transplant people.

Thank you all!

[Alterlady]

Глюкокортикостероиды провоцируют изменения настроения, поскольку меняется гормональный фон. У меня была пересадка почки 3,5 года назад, и около 1 года я боролся с изменением настроения.

[Stexx]

Hi I am now 7 months post transplant and yes most of us get this emotional response, and yes some of it is down to staying in a bit of a bubble for a few months, and much is due to ‘not’ being able to get back to our normal routines as quickly as we’d like. Well I feel I’m past the stage and luckily can now get back to being what’s ‘normal to me’ So like most of the flipping side affects here, yeah you do get used to them, yeah it does usually get better and yeah keeping positive and upbeat about the alternatives that were available to us yes it’s getting better for me, and does for the majority after transplant 🤔😃

[daxielovinglady]

Hi Sandi, 'hearing' so many speaking about emotions, does help, (thank you everyone for that ) please explain to your renal team just how you feel. ( I'm 6 months post Transplant) Before ...., life was purposeful, I felt confident, independent, strong, very capable, and then..... frail, frightened, lost,. All the things I enjoyed have gone, my clothes fit sometimes ....even shoes are 1 or 2 sizes larger etc., etc., ., AND this Pandemic adds panic to the equation. The threat 'outside' from 'the poisonous hordes' means keeping clear of places I use to enjoy. Who knows who has the Virus ?, Covid 19 does kill ., so yes I also have really, bad days. and yes, some days its as if the rug has been pulled out from under , but starting again slowly is the only way up.. So we feel for you Sandi, it is tough.....but CHIN UP as we English say....you are worth it .