Moan

[jojokarak]

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

[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 🍀🐝

[jojokarak in reply to Caspiana]

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 in reply to jojokarak]

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

[jojokarak in reply to Caspiana]

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

[Caspiana in reply to jojokarak]

It's long and the pool is small. 😑

[BSA-3 in reply to Caspiana]

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 in reply to BSA-3]

🌹

[Millie09]

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

Hope you feel better soon xx

[jojokarak in reply to Millie09]

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]

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 in reply to Millie09]

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 in reply to jojokarak]

Thanks jojo, hope you feel better soon x

[Kristian]

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

[jojokarak in reply to Kristian]

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 in reply to jojokarak]

Its not too bad fortunately, just annoying

[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 in reply to Paulwil]

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 in reply to jojokarak]

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 in reply to Paulwil]

I cracked up at that 😂 ... 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]

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 in reply to Porphyriamaniac]

Thanks hunni x

[Hidden]

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 in reply to Hidden]

Thank you x

[Millie09 in reply to Hidden]

😊xxx

[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 in reply to Danisleigh]

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]

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 🤗 to you all

[jojokarak in reply to Smyally]

Thanks and right back at you 😘

[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]

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 in reply to Jackinthebox]

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]

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