by Paul (57), from Grays in Essex, had a transplant in 2014 for T-cell leukaemia. He’s shared his experiences of life after transplant with us, particularly living with graft versus host disease (GvHD), which is a complication of having a stem cell transplant.
Paul with his family
My stem cell transplant
I had my transplant in February 2014 – I had been totally wiped out from the treatment for two weeks after, then I caught flu and spent further time in isolation. It was a bit like being in purgatory!
It was quite daunting, I didn’t really feel prepared for it. My sister was searching everything on Google, but I said, ‘what you get is what you get – let’s just deal with it!’
But if I could go back again and prepare myself a little better for treatment, I would. You need to put your serious head on for a few days and get ready for the onslaught.
The first signs of GvHD
I first noticed the acute graft versus host disease in hospital around three to four weeks after my transplant. I had a bit of redness on my legs; it started off with some red patches that my wife noticed.
We told the doctor when he came in to see me, and by the time he’d left the room about two to three minutes later the red patches had turned to purple – it was like someone had painted my legs and arms! I was put on steroids straight away, and it only lasted a few days.
I came home from hospital in early April. The sun was shining and I set the gazebo up in the garden, but I ended up sitting out in the sun covered up in a big coat, hat and gloves because even though it was warm – I felt cold!
l can remember feeling cold most of the time, and that can be part of the skin GVHD.
Paul on holiday
The onset of chronic GvHD
By July I felt like I could have gone back to work and could cope with most things.
We went to Portugal on holiday in August. I’m not greedy, but I usually have a good appetite, and while we were there I started to notice that I couldn’t finish my food. By the time I came back I was quite poorly.
And that was the onset of the chronic GvHD – I had problems swallowing food, couldn’t finish my food, and if I had a main meal I couldn’t eat dessert as normal.
The first thing we did when I got back was report to the local hospital as I also had a fever, then mid-week I went to my transplant centre and they confirmed the symptoms were chronic GvHD.
If there are 100 symptoms of GvHD – I’ve had 99. My skin, hair, scalp, eyes, mouth, lungs and intestines have been affected. I’ve had aching joints and muscles, sinus problems and thickening of the skin around my ankles – they look like my old nan’s legs now!
The most worrying is the lung problems – I get short of breath. I can walk reasonably well, but odd jobs around the house are difficult. I remember trying to repair a switch in the cooker this time last year. Even a simple job like that took me all day, because I was so breathless.
Paul and his wife Frances
Treatment for my GvHD
I’m having lots of treatment for GvHD – I’m still on the immunosuppression – ciclopsorin, as well as other regular medications. I have various creams for the skins, eye drops for the GvHD in my eyes. And I’ve been having a treatment called extracorporeal photopheresis (ECP) as well, which seems to be helping.
I also still suffer from fatigue now two years down the line – I’ve always had a manual kind of job, and decorated the house, been really hands-on. Now I do jobs in the morning so I can rest in the afternoon.
We did talk about GvHD before my transplant – the consultant went through it – but not in a great deal of detail. I feel like I’ve been lucky, though. All the GvHD has been running along in the background. I just take it as it comes, deal with it and get on with it.
I feel like now it’s just a fact of managing it; at moment I can handle it, and the treatments are keeping it under control.
I saw an advert on TV the other day that said you shouldn’t have to deal with cancer on your own – but I’ve never been lonely. My wife, daughter, family –everybody, really – has supported me. I could talk the hind legs off a donkey – to anyone who will listen! I’m of the opinion that sharing an experience will hopefully help someone else get through it.
Find out more:
Download our new leaflet Life After Transplant: An Essential Guide to Graft Versus Host Disease (GvHD) for the facts on GvHD. Or read our page on GvHD for more detailed information.
DISCLAIMER: At Anthony Nolan we take great care to provide up-to-date and accurate facts about stem cell transplant. We hope the information here will help you to look after yourself. Each transplant centre will do things differently, so this blog is just a general guide and it’s not intended to replace advice from your doctor. Please speak to your transplant team for more details about your own situation.
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We always said in a strange way, It couldn’t have happened to a nicer bloke, hes taken it and got on with it, and been more upbeat than us most of the time, I remember when we heard we all just sat in shock, he was such an active, busy person.
His wife Frances (my Bestie) has coped so well, she puts me to shame when I burden them with my trivial worries, But they are still always there for me. I do believe that God helps those who helps themselves, although I should probably remember that with myself.
The team at Anthony Nolan are superb as have all his doctors and nurses etc been, I feel pretty confident that he has lightened the mood in many a treatment room.
Hi Anne thank you for your kind comments… I wouldn’t have made if l didn’t have all the wonderful people around me. There’s no better pick me up than being able to share an over dramatic tale of my illnesses, transplant & treatment !
Love Paul & Frances
(Correction) I wouldn’t have made IT if …
Hi Paul,
My story is similar to yours. For about 5 months post transplant I showed no sign of GvHD, then a couple of weeks after coming off the immune suppression I started to get fluid retention which was at first thought to be caused by the Imatinib that I was on as a post transplant support therapy. So reluctantly they took me off of that (a but frustrating as I had to campaign to my MP to get the LHA to fund it).
The fluid kept on building up and I had to have my heart and one of my lungs drained. I was still not showing any other typical signs of GvHD, so they were a bit puzzled. After a few more lung drains I got a rash on my thigh which was confirmed as GvHD. Went on to high dose steriods and ciclosporin and everything calmed right down.
Over the next 3 years I weaned back off the steroids and ciclosporin, until I was just on the daily dose of antibiotic. Then, 2 weeks later the fluid came back, I was off my food and back in hospital having my lung drained again. I had loads more test on heart and lungs and they found that I had pericarditis caused by the pericardium thickening. This is thought to be a GvHD symptom as it responds to steroids and immune suppression, but is apparently very rare.
So back I went again on to high dose steroids and immune suppression. A month later I was back in hospital again with severe steroid induced diabetes, so more tablets to add to the list.
Fast forward to now and I’m on a low dose of steroids and a lower dose of ciclosporin and don’t need to take the diabetes tablets any more.
Still a long list of tablets that I have to take every day, but I have a reasonable quality of life and am still here 9 years after I thought I was going to die.
I still do my DIY stuff and cycling, they just require more planning than they did before to allow for my limitations.
I hope that your situation improves over time and that you learn how to cope with the limitations and the frustration of not being able to everything like you did before.
Hi Nick, as you say stories are similar… I have been recently taking Imatinib (100mg to start increased to 200mg) which caused fluid retention fortunately returning to lower dose seems to have stopped this.
I have written a blog from original diagnosis through to cGVHD, this includes various story’s of my treatment at one time l had Plural & Ascites fluid l can honestly say that was the worst time/thing that l have experienced.
Tablets oh the tablets !
As you say fortunately we are luckier than some, l live everyday for those not so…..
I am just about to have my stem cell transplant in a few days. It’s such a scary thing to contemplate but it really helps me to read about your experience and your fight with gvhd. Thank you so much for sharing. Very best wishes,
Hi Jane good luck with your transplant.
I am day +796 now, stay positive & look to the future… everybody will be there to support you through it.
Make sure you come back on here to let us know of your progress.
Paul
Paul, I never knew you were dealing with so many symptoms. Always so positive, clinic wouldn’t have been the same without you guys for good chin wag.
Hi my dad has his appointment for transplant on the 2nd of June, the consultant has told him he is at increased risk of GvHD. Thank you for telling your story as you say we haven’t been told a lot about the signs and symptoms of GvHD so this has helped a lot with what to look for. I also though that once you were out of hospital you were clear of developing any symptoms so this blog and the comments has given me lots of information and understanding. Thank you and your doing so well ?
l hope the transplant was sucessful & your Dad is on the mend, good luck to you & your family. While l suffer from GVHD post transplant l realise that my symptoms are a minor irritation really in the whole scheme of diagnosis & on going treatment. I always find support from knowing that there are so many people prepared to spend time treating me.
Thanks for sharing your story. I’ve had pretty similar symptoms to you, they’ve gone on for over 6 years now. I’ve also had ECP for over a year and it has dampened down my symptoms, especially the skin. I think more research needs to be done into cGVHD and why it doesn’t burn out in some transplant patients. Well done on keeping positive and telling the truth about this condition.
Hi Jacquelyn thanks for taking the time to read my story… sorry to hear you are still suffering after 6 years. I am still on “tons” of meds & 20 mths into ECP which as you say helps with skin thickening/tightening. Aching joints & muslces is my current problem along with shortness of breath, l remain positive and wish you good luck for the future.