post transplant issues. : hi 4.5 months post... - PBC Foundation

PBC Foundation

9,374 members7,940 posts

post transplant issues.

cazer profile image
21 Replies

hi 4.5 months post transplant... was really good for first few months but feeling much worse now.... bloods okay but awful tummy troubles... very loose stools (no bugs... already been checked)... and cold a lot of the time with hot flushes. menopause has been mentioned but also have temp if 35.5 or similar a lot of the time with raises to 36.8/9... wondering if this means ive got a high temp at these moments... tried to ask t. coordinator but i think she thought i was getting paranoid about temp.... im not but do wonder if could be relevant.?.. anyone else had a similar problem?

i know i must have had a honeymoon period when I was taking the steroids... which have stopped now. such a shame that the initial improvement has faded... any thoughts folks. thanks cazer.

Written by
cazer profile image
cazer
To view profiles and participate in discussions please or .
Read more about...
21 Replies
Kate50 profile image
Kate50

Hi cazer, sorry you are not feeling great and I don't really have any advice, I have a similar experience, hot flushes possible menopause, loose bowels got a bit better when I stopped taking mycophenolate but still happens someone said to me it may be related to having no gall bladder anymore but I have had lots of tests and not had any answers, things did seem to be worse for me probably about the same time as yourself but it does get better, I hope things improve soon for you, take care of yourself 🌸😘

cazer profile image
cazer in reply to Kate50

thanks for your reply... glad you could throw a little light on it... pancreas insufficiency has been mentioned and test has gone off... so hopefully that might throw some light.

did you have to take something instead?? cheers cazer. x

Kate50 profile image
Kate50 in reply to cazer

Hi cazer, at first I on azathioprine and prograf, then they changed the aza to mycophenolate then stopped the mycophenolate so I just take prograf now, it definitely helped with the bowels but still not right I have actually to go for a biopsy 😱 tomorrow as my tests are a little bit off, message me anytime I don't mind 🤗

cazer profile image
cazer in reply to Kate50

thanks... good luck for tomorrow. best wishes cazer

Kate50 profile image
Kate50 in reply to cazer

Thanks for the good luck wishes, got my big girl pants on but it's not working tiny bit terrified n don't know why had biopsies before but feels different this time, I'm very protective of my new liver and kinda don't want to let them touch it haha but sure I'll be fine 😳😳

cazer profile image
cazer in reply to Kate50

yes i feel much the same... im proud of my scar and call my lumpy bit my liver baby..!!! very sad really...!!!!

im sure they will be gentle as well... xx

Kate50 profile image
Kate50 in reply to cazer

Yip me too I have a lumpy bit at the side that's quite a good description of it haha ☺️

cazer profile image
cazer in reply to Kate50

lm so sad that I even should my gynae consultant my scar... no hope... ha ha.!!!

Kate50 profile image
Kate50 in reply to cazer

I was a bit like that and when I didn't show it off one of my kids would, worse one was parents night at school and my son kept trying to pull my top up to show all the teachers 😂😂 although I must confess I am rather proud of my scar 😘

cazer profile image
cazer in reply to Kate50

ha ha... unfortunately my children are too old to show off my scar!!! im very envious.

i do find myself asking people if they would like to see my scar... are we mad or is it a side affect of the meds...???

Kate50 profile image
Kate50 in reply to cazer

Methinks a bit of both maybe but it is a magnificent scar i love it 💞💕

cazer profile image
cazer in reply to Kate50

😂

in reply to cazer

It makes total sense to me, or maybe I'm mad too. I love my scars from colon surgery - the one on my arm from TPN when I was unable to eat, the one in navel where the laparascope entered, the one that looked like a scorpion below below liver where temporary illeostomy was sited. I think they say to me that I faced hard times, fought these battles, won them, and that I did survive, and I still can.It feels like we just have to keep doing the little things to overcome the biggest ones. Keep going! Best wishes to you cazer and to Kate50.

cazer profile image
cazer in reply to

and to you. xx

sheri44 profile image
sheri44

hi 🙋 hunny. You sound just like i did in my posts. Tummy troubles ended up being gluten for me. The temp and flushes made me think i was having a 2nd menopause. We can't take hrt but i got clonidine prescribed which help a lot. I still get spiking temps mainly at night but nobody seems to be bothered anymore. Hope u get sorted. It helped too when mycophenolate got stopped. Good luck hunny xxx 🐾🐾

cazer profile image
cazer in reply to sheri44

thats very useful... especially as they are trying to blame on the menopause. thanks cazer.

sheri44 profile image
sheri44 in reply to cazer

i had already had the menopause at 30 they did try blaming it but couldn't after I've already had it. Oh I'm always whipping my scar out. Don't care where. First time was in a phone shop. Lad nearly fainted 😂😂

Kate50 profile image
Kate50 in reply to sheri44

Hi Sheri , how are you doing these days keeping well I hope 🤗

sheri44 profile image
sheri44 in reply to Kate50

hey sugar. I'm ok. Just had my hernia fixed on my liver scar. 2weeks today 👍🏻 resting is getting boring again must admit. How's you? 💞

poppppy profile image
poppppy

Hi cazer so sorry to read what u have been through and u are taking time to advise me as well . Trying to return the favour .low temp can be hypothyroid .not normal to always read lower than 36.5 at least .I was 36.2 all the time before treatment .sorry if this crap advice .also have u had your Perimenopausal blood test done . There is a definitive blood test to show if it's menopause .

Poppy

cazer profile image
cazer in reply to poppppy

thanks... yes im in menopause but the gynae man said that didn't prove that symptoms were meno or meds.

one of anti rejection drugs is being reduced slightly... so crossed fingers that will help tummy!!! got to get a new thermometer.. so will check again...

both doc and consultant were uninterested about temperature... I was trying to find out whether if mine is normally low then if it goes up does that mean it could be high for me??? but the consultant just said not to worry about it

didn't get that!!!!!

so im none the wiser.!!!!

thanks for concern. best wishes cazer. x

You may also like...

10 Weeks post Transplant

fighting to get back. Sending love and positive thoughts to you all. Debbie.

20 Days post transplant

Hi a!l, just thought I'd give you all an update on my progress, firstly I am feeling really good had

post transplant 5 weeks hot sweats!

Just wondering if anyone whos had a transplant got hot flushes... im finding it difficult to deal...

Pbc post transplant

Hi, this is my first post, I had a transplant for PBC in 2010. Things went reasonably well. Almost 8

Alt and alp raised post transplant? Bile problems?

enough to receive a wonderful gift at St. James's in Leeds in the form of a transplant. Despite...