Moan: I hate hate hate immuno... - British Liver Trust

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jojokarak profile image
jojokarak
β€’32 Replies

I hate hate hate immuno suppresents at the moment I am so sick of getting infection after infection and now my second cold in 6 weeks arghhh all winter not one sniffle the sun comes out and it's like pow here's everything possible for you getting me down now!!!

And sorry I knew I could be worse off !

Just need to let some steam off its hard trying to be positive all the time

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jojokarak profile image
jojokarak
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32 Replies
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Caspiana profile image
Caspiana

Hello jojokarak .

I understand what you mean. I am on immunosuppressive medication too because I have an autoimmune disease. I am also waiting for a lung transplant and have read a lot about the drugs used post transplant. It really is hard isn't it? I am guessing your transplant was fairly recent and you are still in the full regime of drugs? Please hang in there. I think it will get better. Just keep being as careful as you possibly can.

Sending warm wishes,

Cas xx πŸ€πŸ

jojokarak profile image
jojokarakβ€’ in reply toCaspiana

Thanks cas x and I 18 months post transplant it's just my white blood count is rubbish as well ... I just keep thinking I shaking it off and then boom! I be ok once I get used to blowing my nose 20 million times a day lol

And bloody hell hunni how long have you been waiting for your transplant?

And where are you if you don't mind me asking? X

Caspiana profile image
Caspianaβ€’ in reply tojojokarak

I've been waiting thirteen months. 😊 I live in Japan. You've done so far jojokarak . That is so amazing. xx 🌹

jojokarak profile image
jojokarakβ€’ in reply toCaspiana

Wow Japan .... What's the list like over there?

Caspiana profile image
Caspianaβ€’ in reply tojojokarak

It's long and the pool is small. πŸ˜‘

BSA-3 profile image
BSA-3β€’ in reply toCaspiana

Hi, Cas, it must be very hard waiting and the not knowing. I really hope that your turn comes soon. Take the very best of care

Caspiana profile image
Caspianaβ€’ in reply toBSA-3

🌹

Millie09 profile image
Millie09

Aww. Bless jojo, your like a yoyo. Thought everything was going good since your transfusion.

Hope you feel better soon xx

jojokarak profile image
jojokarakβ€’ in reply toMillie09

No I found out a couple of weeks ago it's made no difference the iron infusion, that's why they talking about taking my spleen out ...

How are you? X

Millie09 profile image
Millie09

No way?? Really. Good god hun , your going through it at the moment. My sister is going to hospital 4th june to have her gallbladder removed. She's been very poorly this last two weeks and her LFTS are worse than mine so bit worried about her

Im not too bad thanks jojo, liver wise stable, just my mobility is not good.xx

jojokarak profile image
jojokarakβ€’ in reply toMillie09

Oh wow sorry to hear about your sister I hope the op goes well and her symptoms relieve xx

And glad to hear your liver playing ball x

Millie09 profile image
Millie09β€’ in reply tojojokarak

Thanks jojo, hope you feel better soon x

Kristian profile image
Kristian

Just gone through a cold too, now in the cough phase! I think my flu jab is wearing off!

jojokarak profile image
jojokarakβ€’ in reply toKristian

Not good hunni I would of thought we would of had this in the cold weather .... Hope it doesn't last too long x

Kristian profile image
Kristianβ€’ in reply tojojokarak

Its not too bad fortunately, just annoying

Paulwil profile image
Paulwil

Hi jojo,

I am sorry to hear that. I haven't had any colds, I did have pneumonia in February though with 8 days in hospital.

What dose of immunosuppressents are you on? I am on 5mg Advagraf, it has gradually reduced from 12mg when I had the transplant in October.

I have experience of working in infection control in hospitals. Very frequent handwashing can prevent a lot of colds, I keep alcohol gel in my car and use it every time I get into it

Best wishes and good health.

Paul

jojokarak profile image
jojokarakβ€’ in reply toPaulwil

Thanks Paul I am on 6mg of advagraf... And I am now the most anal person about washing my hands and using the hand gel , I take it everywhere with me, but we can't control people's manners and not covering their mouths/noses with a tissue when coughing or sneezing

I am going to start a campaign anyone who has a cold must wear a mask out lol

Paulwil profile image
Paulwilβ€’ in reply tojojokarak

I can remember that someone dared to sneeze when I was leaving a supermarket just after I got discharged from hospital. I held my breath and nearly passed out by the time I got to the exit

jojokarak profile image
jojokarakβ€’ in reply toPaulwil

I cracked up at that πŸ˜‚ ... When I see the taxi driver who started all this off 7 weeks ago he going to get a piece of my mind ... I rang the taxi firm a week after he picked me up and give them a lecture, I said if one of your driver's go so much as a sniffle do not send to pick me up I been using for years and it's a small firm and they know how poorly I been over the years, but as everyone believes because we have had a transplant we are now cured!!!

Porphyriamaniac profile image
Porphyriamaniac

Aww love ☹ we're all entitled to a good moan now n again! I'm sorry you're feeling so shitty, I hope you're feeling better soon. Xxxx

jojokarak profile image
jojokarakβ€’ in reply toPorphyriamaniac

Thanks hunni x

This is to all of you above feeling crap... I wish you all well very soon. The weather is too nice to be poorly 🌻🌼🌹🌸🌺🌷🌞🌞🌞

Love Laura xx

jojokarak profile image
jojokarakβ€’ in reply to

Thank you x

Millie09 profile image
Millie09β€’ in reply to

😊xxx

Danisleigh profile image
Danisleigh

My son has a throat infection currently only 5 weeks after tonsilitis! His prograf was too high this week and his white blood count low so I assume this wouldn’t have helped, they have lowered it to 3mg twice daily now. He is 14 weeks post transplant and started on 5mg twice daily....not sure how much he will end up on long term?

jojokarak profile image
jojokarakβ€’ in reply toDanisleigh

First six months they constantly tweaking the medication to find the right balance .. I hope he recovers soon and his recovery continues as best as can be x

Smyally profile image
Smyally

I hope you all start to feel better soon. It’s horrible when you feel so shitty but hang in there. Things do get better eventually. Sending virtual love and hugs πŸ€— to you all

jojokarak profile image
jojokarakβ€’ in reply toSmyally

Thanks and right back at you 😘

BSA-3 profile image
BSA-3

Hi, jojo, I don't have any experience of immunosuppressants ( in fact my doctor says my immune system is shot to pieces, ) but I'm no stranger to feeling rough and ugh, so I can fully empathize with how you're feeling. All I can really say is that you've beaten worse so stay strong. Take care

Jackinthebox profile image
Jackinthebox

Hi there

My husband has autoimmune Neutropenia which means his white cell count falls very low and he is at risk of serious infection. When it was first discovered, they carried out many tests to see why his cell count had fallen and found nothing, hence the decision that it must be his auto immune system. He was giving himself an injection twice per week for a year to increase his cell count which worked. But every time he went near a hospital, they all panicked and put him into isolation fearing he may catch infection...even with the injections. His regular haematology consultant left and he saw another locum chap who promptly said 'you don't need any medication it is your auto immune system, which is quite different to any other reason for the white cell being low'. He said it is so misunderstood, even by the hospital staff and GP's?? Slightly terrified, we took his advice, keeping fingers crossed and still being fearful, but actually his cell count increased naturally. It took a bit of a nose dive recently when he had a leg infection, but 5 days of injections and it rose again. I realise your situation is different because you have had your transplant, but thought you might be interested in this story. Take care and sincerely hope you feel better soon, it sucks when the sun is shining and you feel rough. JX

jojokarak profile image
jojokarakβ€’ in reply toJackinthebox

Thanks and it is really interesting as I am currently under a heamtologist to determine why mine lower than even people who are on immuno suppresents see seems to be leaning towards me having a bone marrow biopsy to determine if mine is a auto immune condition as even before I got diagnosed with cirrhosis it was low and I had to go hospital if I cut myself as my blood doesn't clot ... Anyway I hope they figure it out soon enough, it was nice to hear your story at least I have hope of them getting there one day 😊

Kimlescam profile image
Kimlescam

Good luck - my husband had his 6 months ago and is currently on 7mg Advagraf. Like you he is getting fed up of being ill and getting infection after infection it's not much fun but he's still here and I'm not sure he would have been without it.

Perhaps wearing a mask lol - think he would even consider that sometimes.

Hope you are feeling OK now and I promise to always use a hankie.

Lots of love

Kim

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