Skin problems following cellulitis

[sheri44]

Hi all, I posted a while ago about cellulitis how I got it from a catch scratch. Since last week iv antibiotics have stopped but I'm coming out with red hot patches all over my chest. I was told over the phone I was discharged from hospital. I don't feel good when these pop up. Flu like symptoms. Biopsies (of the wrong area) were inconclusive by a dermatologist. I have no where to turn now. My gp sent me back to hospital on Monday and the doc there was awful like last time said I don't know what it is. I pleased for answers but didn't get anywhere ended up going out in tears. I'm a year post transplant. Any body else suffered with anything similar or any ideas? They have also left my picc line in

[carmik]

Hi

Sorry to hear all this.

This is very similar to my husband.

He is 5 plus years post transplant but he had to have Incisional Hernia Repair and ended up with cellulitis. Although this was a couple of years ago he is now getting a lot of red patches similar to yours. First it was treated with anti fungal cream and that didn't work. Then two dermatology consultants had a close look and are treating it as ezcema patches but they dont look like normal excema. But the cream is working.

What hospital are you attending and are you seeing a Consultant Dermatologist.? This should be taking place as a normality after transplant as Immuno's cause skin problems.

[sheri44 in reply to carmik]

I'm waiting for the same surgery as your husband. I've seen dermatologists had biopsies which where inconclusive & other negative. Creams made it blister. I've just been dumped by everyone. I was at Royal Bolton. Leeds where I had my transplant are a bit stuck too. They have done extra bloods but nothing yet. It's really strange. They have stopped my mycophenolate at Leeds last fri but I'm not sure if that's a normal thing or not. thankyou for replying 😊

[carmik in reply to sheri44]

You cant be dumped, as a post transplant patient you are entitled to be looked after. If you are not happy you must make a complaint.

I have made many and believe me he gets well looked after now.

Good Luck

[sheri44 in reply to carmik]

thankyou. I don't even know where to start.

[LAJ123]

Sheri,

Really sorry to hear you're having a difficult time.

Have you contacted the transplant coordinator ? S/he would be my first port of call in a situation like yours. As carmik just said - when you are transplanted you are their patient for life.

Hope you get sorted soon.

Jim

[sheri44 in reply to LAJ123]

hi Jim. I've been in contact by email to Anna at Leeds. She herself is a bit stuck and said about asking my GP for a referral to another dermatologist i explained again about the 12week late but got no reply after. Im back in clinic Nxt fri but when your feeling a bit rubbish it seems like a lifetime away. Thankyou

[LAJ123 in reply to sheri44]

Well its a positive that you will see somebody on Friday. I'm hoping you get something helpful from the appointment.

Take the picture and any others with you so they can see. Nothing worse than saying 'well it looked really bad last week' and there is nothing there or it looks a lot better.

Yes, when you're worried and your mind is telling you the worst - a week can seem like a very long time.

Don't forget that we are always here to listen.

Jim

[sheri44 in reply to LAJ123]

thanks Jim. I have kept a photo album of it but they have seen it & are no wiser. I will have to see what they say again this Friday. Thankyou

[Hidden]

Hope you feel better soon. Good luck with your appointment on Friday. Lots of love Lynne xxxx

[sheri44 in reply to Hidden]

thanks Lynne hope your keeping well xxxx

[Hidden]

Thank you

Still getting alot of pain. Seeing Dr on Tuesday. Don't see consultant until 3rd august, can't be brought forward as he's away for 8 weeks!! Please take care. Lots of love Lynne xxxx

[sheri44 in reply to Hidden]

sorry your still in pain & that's a long wait 😞 here if i can help in any way pls look after yourself xxx

[Hidden in reply to sheri44]

Thank you so much. I'm here for you too.

Where do you live if you don't mind me asking . Please take care lots of love Lynne xxxx

[sheri44 in reply to Hidden]

im in Farnworth Lynne nr Bolton 😊 xxx

[Hidden in reply to sheri44]

I live in Castleton, Rochdale, a few miles out of Bury xxxx

[sheri44 in reply to Hidden]

ahhh i see. I know where Rochdale is but not exact areas. I get lost in my own place, pretty useless at finding my way around. Sat Nav lol xxxx

[Hidden in reply to sheri44]

Rochdale isn't far. I know it doesn't take us long to get to Bolton. It would be nice to meet up sometime if that's ok I with you ? How are you feeling? Lots of love Lynne xxxx

[sheri44 in reply to Hidden]

that would be lovely. I would like that a lot. I have a rotten kidney infection & gastritis and a granddaughter who's overdue. The way i feel though she's better staying where she is for a day or 2. I couldn't look after my grandson like this. The doc has given me more meds to help but they make you drowsy. I'm scared of taking them just incase xxxx

[sheri44 in reply to Hidden]

Are you not far away? Xxx

[Kate50]

Hi sheri44, sorry you are having a hard time, really frustrating when you know something is not right but nobody seems to listen , I've not had cellulitis but I am getting weird skin problems that no one seems to know what they are, first I was told fungal infection and the treatment didn't work so now they are saying some kind of eczema, I also had my mycophenolate stopped and my tacrolimus increased , also got an appointment for an MRI on Thursday that I wasn't told about, so I understand your frustration hope things get better for you soon xxx

[sheri44 in reply to Kate50]

that's sounds just like my problems. He also mentioned an MRI scan to see if its anything beneath the surface. Hope all goes well pls keep me posted. Im so frustrated like you. Hope they find what's going on with you fast xxxx

[Hidden in reply to Kate50]

Hi

How did your MRI go today? Take care xxxx

[Kate50]

Hi sheri44, the MRI is of my abdomen just out the blue nobody told me about it so don't know if it's routine or not, the skin problems they have said if it doesn't clear I could try a steroid cream but didn't prescribe anything, for me at the moment it is fatigue that is getting me down, but I think when liver function is fine they don't seem to bother with anything else, i get fed up being told by my gp to speak to transplant team only to be told by them to speak to my gp grrr, but at least I'm still here to moan about it so that's a good thing 😁, hope you feel better soon xx 💖🌸

[sheri44 in reply to Kate50]

you sound like ur having the run around and everyone passing the book just like i am. So annoying. I had the steroid cream & it made me blister badly. 😞 never again. I know what you mean too if your bloods are fine then you should be!! 😠😠 that winds me up because u know ur own body & know when something isn't right. Obviously when I'm shivering my hearts beating over 120 the red patch is on fire it hurts i have headache feel sickly something is going on but oh your livers working great sometimes i think please don't say it again or i will flip. I can smile writing this now but at the time no way !!. Passing the book is frustrating too. Now i have Leeds as the hospital i was under doesn't know what it is so they won't see me again.. Yeah still here to moan which I'm so grateful for but pretty pissed off too. Good luck with your scan. Hope everything goes well & your skin gets sorted 🌠 🤞 😘 xx

[Kate50 in reply to sheri44]

I can feel your frustration in your words and I totally understand it , I get the same way I have days when I think I can't feel this bad and not have something wrong but then I have days when it's not too bad, I think when you don't have an answer it's even harder to deal with, I wonder sometimes if I am having menopause symptoms and I have asked this more than once but never get an answer, I suffer badly with fatigue, joint pains, things that I never had before transplant, is frustrating, hope you get some answers soon wish I could offer you some advice, I do know how you feel and I'm always here if you need a rant xx ☺️☺️

[Hidden in reply to Kate50]

Hi

Hope you feel better soon. I suffer with pain around liver area, joint pains and fatigue so I know how you are feeling. Please take care. Lots of love Lynne xxxx

[sheri44 in reply to Hidden]

😞 i suffered like you before my transplant. I think most of it was due to what was happening with my liver. I've now got gastritis & a kidney infection. Just want it all to stop ✋ the skin problems are still there too. Getting worn down by it all. Hope your having a better day. Liver pain was awful i wont forgot that in a hurry, nor this kidney pain that rears up often. Hugs xxx

[Hidden in reply to sheri44]

Thank you. I'm no better, thanks for asking. Hope you feel better soon . Lots of love Lynne xxxx

[sheri44 in reply to Hidden]

im sorry your no better. What are they doing for you at the moment Lynne? 😞 xxxx

[Hidden in reply to sheri44]

Hi

Thank you. Got lots of pain relief but it doesn't do much! Dr referring me to rheumatology as well. My friend said I've got the symptoms of lupus which she has, was reading up and you can get lupus with liver disease.

How are you feeling? Better, I hope. Xxxx

[sheri44 in reply to Hidden]

you can get Lupus yes. It's all going wrong my end. Gastritis & kidney infection now. It's not my year at all. Leeds wanted iv antibiotics & iv anti sickness giving @ home. My local hospital over rid them again so ive been struggling for over a week. Can't eat anything & fluids are a problem. Tried all weekend to contact Leeds but had no call bk. Fed up today xxx

[Hidden in reply to sheri44]

Hi

Do sorry you feel so rough. Have Leeds replied to you yet? Please take care. Lots of love Lynne xxxx

[sheri44 in reply to Kate50]

i had a second menopause after my transplant. Were not allowed hrt though due to bones already being weaker. I got some medication which has helped so much. No more hot flushes for a start. They got me down more than anything. It only takes a simple blood test to see if you are hunny. It's unfair when your not getting the answers. Pls ask your gp for the blood test, at least you will know if that's causing your symptoms. I hope things get better. It's another rough week 😞 xxxx

[Hidden]

Hi Sherrie

How are you doing? Sorry I've not been on for a while but I've felt really rough. Had an ultrasound on Wednesday evening, spoke to liver nurse on Thursday, she said liver definitely more fatty than before

She knows I'm trying my best so she is sending me for a fibroscan sometime in October. Take care Lynne xxxx