Stem Cell Transplant - A Personal Diary
28/04/08: Donna Wilson , NRAS Volunteer
Donna Wilson, age 33, is an NRAS Volunteer who lives in Bradford. Here she shares her thoughts on her experience of undergoing a stem cell transplant in 1999.
In 1999 I was told by my rheumatologist that I needed a stem cell transplant. I had suffered from Juvenile Idiopathic Arthritis ( JIA) since I was four. JIA is a group of systemic inflammatory disorders of unknown cause, which cause chronic joint inflammation and affect children under the age of 16 years and it seemed to have consumed my life. I had never heard of the treatment but I was willing to try almost anything.
Left: Donna pictured three months after the transplant surgery
The aim of the stem cell transplant was to slow down or even stop the rheumatoid disease from causing any more damage, by completely suppressing my own immune system and rebooting it with my cleaned and recycled stem cells.
What follows are some excerpts from my diary:
Sunday 1st August
I arrived at the hospital this evening. They have tried to make the ward look like a hotel with private rooms, carpets and flowers but the smell and the silence remind me where I am. It all starts tomorrow and I don’t think I’ve ever felt so alone and so scared.
Monday 2nd August
I thought being in hospital was supposed to be stress–free, but I’ve been prodded and poked all day and I want to go home already! The doctor has told me that tomorrow I am going to theatre to have a Hickman line inserted in my chest, so that everything that needs to go in and out goes through the line. I made a few phone calls and told everyone about tomorrow, and then went out on to the balcony and stood listening to the traffic. I’m worried, excited, scared and nervous. I didn’t realise how emotional all this would be.
Wednesday 4th August
The Hickman line was fitted yesterday and it’s really sore, but I’m told this will improve. My mum came to see me yesterday although I’d asked her not to, and although I don’t really remember her visit it was nice having her with me. I’m now completely bald, having had my second dose of chemo on Saturday. It is hoped that the new and improved stem cells to be transplanted next week will stop this disease from eating away at my body through my blood. All this and I’ve only got arthritis!
Friday 6th August
I think my visitors have a rota system! The doctor came today to explain that tomorrow I’m to have a very high dose of chemo to ensure that my own immune system is completely suppressed. No going back now.
Monday 9th August
Saturday was one of the worst days of my life. Nothing can prepare you for the experience of chemo. I have never been so sick or felt so weak. One saving grace though was that I was allowed home last night. I don’t remember much but it was nice to see my dogs. I don’t know how anyone can look at me at the moment as I can’t bear to look at myself. Today though has been an important day as I had the revised stem cells put back through the Hickman line and the whole process lasted less than 30 seconds. The smell will, I think, last rather longer, as a cabbage soup odour fills the room. Apparently it’s now a waiting game. I’m at a very high risk of infection, so I am isolated in my room, and will have to wait until my blood count reaches 1.6 before I can go home.
Thursday 12th August
This is awful. Every morning the nurses come in and write my blood count level on a board. At the moment it’s 0.9 so I’m going nowhere. Not being able to leave the room is worse than I had thought it would be, despite TV, video, CD and phone. The side effect of the transplant is that I am sleeping a lot, but my head is itching all the time. I’m not exactly Demi Moore in GI Jane!
Tuesday 17th August
I didn’t feel good over the weekend, but my blood count is slowly creeping up and the dietician visited and told me what I can and can’t eat when I go home. I can’t believe that the ‘what not to eat’ list is all the food I love, so no more takeaways for a while! Tomorrow I am going to try some wigs.
Sunday 22nd August
Every morning since my transplant, a nurse has come into my room, washed their hands, written my blood count on the board, washed their hands again and left the room closing the door. Today was different! The nurse came in but left the door open and with a grin on her face, wrote 1.9 on the board!! She said the doctor was on his way but that if I wanted I could go and sit out on the balcony.
I had forgotten it was summer and for a few minutes just stood taking in all the smells and sounds which, today, seemed refreshingly new. The doctor managed to persuade me back into my room and explained that the Hickman line would have to be removed, that I would be given my ‘take home’ medication, and that I would need to return within a week for follow-up. Suddenly it seemed no big deal, the transplant was done, my immune system was on the mend, and I had a trendy wig to go home with, so to the outside world I would look like any normal person when I walked out of the hospital.
Below: 
Donna today
October 2007
Unfortunately the effects only lasted about nine months and since then I’ve had both knees replaced, have had four different biologic treatments and go to hospital every two weeks for an infusion. I know that the short term benefits from the transplant can never outweigh the long term losses I’ve suffered. My hair has eventually grown back, but due to the chemo, it will be unlikely that I will ever be able to have children, but given my present circumstances could I have them anyway? I may never know.
Over a duration of two years, seven patients received a Stem Cell Transplant, and each patient only received a maximum of 12 months' benefit. Stem Cell Transplants have now been stopped for arthritis patients.
As Professor Paul Emery, arc Professor of Rheumatology & Head of the Academic Section of Musculoskeletal Disease & Clinical Director of Rheumatology at Leeds Teaching Hospitals Trust, explains:
“It is true that the trial of the autologous (derived from organisms of the selfsame individual) stem cell rescue from high dose chemotherapy trial has stopped. This was because of the availability of multiple new agents for RA. It was also (as Donna demonstrates) not of long lasting benefit. Interestingly one problem may be that it was not aggressive enough for RA. There are however stem cell transplants still proceeding for other connective tissue disease particularly scleroderma (an autoimmune disease that affects the blood vessels and connective tissue)”.