Transplant experience and blog

Please post here your experiences of MDS as a patient, carer, family or friend

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Transplant experience and blog

Post by sophie » 01 Dec 2010 11:50

The husband of an MDS patient has asked me to post the following experience on the forum - they will both be posting updates on progress.

My Hospital Adventure

Three years ago I was diagnosed with MDS.
I had been feeling tired and went to my doctors, who sent me for tests. It turned out I had developed MDS. When I was first diagnosed it was explained to me that I had a couple of options- I could have a Bone Marrow Transplant or could go for blood transfusions every week or two. After looking into the BMT option, (it looked very scary!!) I decided I would stick with the blood transfusions.
I have been doing this for the last 3 years but was getting really fed up with having to go for transfusions every week and having to take treatment to keep my iron count in check (injection pumps etc) My MDS was not changing and the only symptoms I had were that when my blood counts got low I got tired.
(midway through my illness it was suggested that I might sign up for a drug trial that was available, this involved 3 weeks in hospital, the drug treatment was called ATG, made from rabbit cells! I had the treatment, but with me it did not improve the disease, and I had a bit of a rough time with it) Back to square one.
I discussed options with the consultant, and he advised me that if left, there was a possibility it could turn to leukaemia. Problem was that it was not a black and white issue- it could change tomorrow or not for ten years, or ever. But if it did, the fact that I had had MDS first would make it much harder to treat. Also there was the age factor. I was 44 when I developed the disease, fit and healthy, apart from the MDS,
do I do it whilst relatively young or wait and hope it doesn’t change. What a tough decision! Also I have 2 young children. When is the best time to undergo a life threatening procedure? I decided after much heart searching to go for the BMT.
It was scheduled for June 2010. My husband and myself put it to the back of our minds and, I suppose- buried our heads in the sand and when the date for the bmt got closer our consultant realised that I had not really made up my mind 100% and postponed the op. After further consultations the procedure was set for September.
My brother was a 100% match and agreed to be my donor.

Monday 6th Sep Went to Airedale for Hickman line fitting. Went ok.

Wednesday 8th
Big day no1. Admitted to Ward 89, Bexley Wing,
St James Hospital. Started chemotherapy -11 pills! Later on put on drip. Feeling ok.

Thursday 9th
More pills, then chemo by drip in the evening. Still feel ok,
This is regime is repeated for the following six days. Hubby has been staying over in the room for last three days, but has gone home today.
Not having any bad effects just bored solid!! And really missing my children who are not allowed to visit the ward

Wednesday 15th
In the afternoon I started the ATG drip (to help combat GVhD).
Had VERY bad reaction to it- all my body swelled up, a rash developed all over, and my blood pressure dropped through floor!
The treatment was stopped whilst the symptoms disappeared, which happened as quickly as they appeared!
I was started again on a lower dose of ATG. Within a few minutes, I was struggling to breathe, my throat closed up, my face swelled and I lost track of what was happening, I think my BP dropped again, it got very busy in my room for the next few minutes whilst the team of doctors, nurses and anaesthetists tried to get me sorted out.
It turned out that I had Anaphylactic shock, caused by the ATG.
Note:- 2 years ago I was in St James’s, undergoing trials with ATG for my MDS. It made my sick and gave me a rash, but nothing like this. I can only assume that my body remembered the crap time I had had with it before and thought “sod that, I not having any more of this!!
Hubby came back over, and by the time he had done the 1 hour trip, my symptoms had all but vanished, with just a sore throat remaining.
Started alternative to ATG this evening. It is called “Campath” and is given by drip.
Later in the evening I developed a temperature, which gradually went up to 40 degrees. I was given, Paracetamol to try and get my temp down, and also antibiotics via drip to fight the infection that apparently was causing the problems.
I started being sick, my bp went down, and had a really rubbish night.

Friday 17th September
BIG DAY 2 -Transplant Day
Started day with an x ray to check for infection in chest. The team thought it may have been an infection in my Hickman line, so had to put another cannular into my arm for my treatment whilst they checked.
My Oxygen levels are down, so I had tubes up my nose, and because my fluid levels had to be monitored, they have put a catheter in. I have tubes everywhere!!
Today is the day for my Bone Marrow Transplant.
Because of my ATG reaction, and consequent late start of the anti GVhD Campath treatment, I am having my second course of Campath today, followed by the BMT in the evening.
The Bone Marrow transplant was quite simple. It was put in via a drip, just like a transfusion and took about an hour and a half.
DONOR. Allogenic BMT.
The bone marrow was donated by my brother who is a good match.
He spent the previous week having injections, to boost his bone marrow. He told me they where not a problem, but he had to travel to get them.
He came in to St James’s on Tuesday 14th and had his cells harvested on Wednesday morning.
I thought this was taken from your bones like when I had a bone marrow biopsy, but it turns out it is done just like a blood donor session, with the cells being taken from a cannular on his arm.
Previous to the harvest, he said he had experienced aching limbs and joints and felt very tired, ( a bit like having flu). Apparently this is a good thing, as it means that plenty of cells have been readied for harvest.
The harvest was successful and he went home Wednesday night.
He stayed of work for a week to regain his strength and returned to work non the worse for his donation. I cannot thank my brother enough for what he has done for me, although his suggestion that I will now develop his rotund physique and male nether regions did not go down very well-lol!

Saturday 18th Sep BMT+1
Slept quite a lot, I suppose the last few days took it out of me.
Had a blood transfusion as my haemoglobin was down, my temperature is going down towards normal now. I am still having lots of fluid via my drip, but I am starting to balloon up, my weight has gone up by 8kg!! (maybe my brothers prediction is coming true, I will have to check down my jamas!!)
The weight problem turns out to be water retention, so I am on water tablets to make me “go”
This seems to be working and my swelling is going down.

The next few weeks seem to blend into one, with the day to day rituals, blood samples, checking for rashes etc and sorting drips going on as usual.
I am now in isolation because my immune system is at its lowest and I am neutropenic. My husband can visit but aprons etc are the order of the day
The major change is my hair. Because it had been a couple of weeks post chemo, and my hair was still ok I was on quite a high because I thought that maybe it was not going to come out. That high came crashing down one morning when I was having a shower. I had noticed a few hairs on my pillow for a couple of days, but whilst in the shower it began to come out in lumps- I burst into tears. My husband was there, but that morning had just felt the tingle of a coldsore on his lip and had been advised to go home so as not to pass anything to me. He couldn’t even give me a cuddle to console me about my hair loss.
I did not want to wear a headscarf so the hospital sorted a wig for me. I received a visit from the wig lady, who showed me the ones that were available and helped me to choose one that was nearest to my hairstyle and colour.
When I got my wig, I had my head shaved, and with the wig on I looked like my old self.
(my husband wanted me to get a Raquel Welsh wig that was modelled in the catalogue by the lady herself- he got a slap!!)
Sorry I seem to have skimmed through the last few weeks but in truth they were much of a muchness, the same daily routines day in day out. Boredom was the worst thing - there is only so much Jeremy Kyle you can watch!

Wed 13th October BMT +26
They have told me my I can go home today if my neutrafils stay above 1.
Fingers crossed!
WoooHooo - Neutrafils just above 1 and I can go home.
They have told me that I must get in touch if I have the slightest of problems, and I have to take the worlds supply of pills home with me, but who cares, I am going home.
I didn’t tell my two children (7 & 8 year old) that I might be coming home, just in case it didn’t happen, but when I got home they were being showered by Grandma, so we sneaked in and I was sat on the sofa when they came down.
I have never seen eyes as big as on my son when he saw me sat there, hugs and tears were the order of the day. 36 days without seeing your mum is a long time in a little life, even with the constant video messages by camera!

Life out of Hospital
I am getting used to being at home, it seemed strange at first, but I am settling in ok.
I have to go back to hospital a couple of times a week at the moment, but as time passes this will reduce.
The only problems I have had since my “release” have been a slight rash which is apparently Gvhd and further problems with water retention.
I have to be careful what I eat, and seafood is a definite no no which is a shame as its my favourite, but as long as you are careful with prep, you can eat most things.
I will not let my hubby see me without my wig (or a turban at night) he says he is not bothered what it looks like without but I prefer him to see me as I used to be.
About three weeks after I came out ( BMT+50) my hair is starting to come back, I have a fine growth which is getting thicker by the day, maybe no wig at Christmas?

November 30th BMT +74
I feel ok, but I get tired easily at the moment. I am still on lots of pills (30 per day) but hopefully they should start to reduce now. One problem that I forgot to mention is that a week or so after I came home I started to develop facial hair! ( my brothers prophecy again?) apparently some of the drugs I am on can cause this, My “tache “ was getting as big as my hubby’s, (Not really but it felt like it was- I so conscious of it!) so I rang the ward and they said it was ok to use hair removal cream. Everything back to normal now, but a slightly sore face- make sure you use a cream for sensitive skin.


Just a case of trying to get back to normal now. I am not going out too much until I get the go ahead from the hospital, but my BMT + 100 is up on Boxing day so hopefully I can get out and about after that.
I am still having to go for blood transfusions but the consultant says that it may take a while for things to start improving. The doctors and staff at the hospital have been fantastic, both during my stay and afterwards and I cannot thank them enough.

Tips:- Most of the tips are in the Blue folder you get before going in for a bmt, but a couple I would mention to help you are:-
If you have children at home, use a camera or camcorder to take video messages back and forth to them. It lets them know you are ok, and vice versa.
Lucozade/pop- I drank it constantly, get it on offer at supermarkets while you can. Put two or three bottles in the fridge in your room- you will appreciate the cold drinks.
Bring DVDs to watch as the tv pictures are rubbish (the tv’s have portable aerials)

Claim your benefits
My husband and myself have never claimed for anything in our lives, and my husband was refusing to apply for income support whilst he was on unpaid parental leave, telling me “we would get by”- wrong! Put aside your pride and claim.
Now is the time to get back what you have paid into the system over your working life. My husband is on income support whilst on parental leave from work, he also claims carers allowance.
Don’t get enraged by the amount of paperwork (like my hubby did), and them wanting to know the entire ins and outs of your personal finances and make sure you tell each department what the other has awarded you. Do this as soon as possible. you will get a social worker in hospital to help you with this. (HUBBY-“I agree, I had my pride and did not want to claim anything but in the end I swallowed my pride, but the delay in my claiming lost us the first few weeks of the benefit claim because of it, you do a lot of running around as the partner/ hubby of a BMT patient- it takes one thing of your mind if you know you don’t have to worry about having no income.”)

Am I glad I went for the BMT- yes …I think! obviously it all depends on the outcome,. I wait in anticipation!
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Posts: 2
Joined: 30 Nov 2010 20:35

Re: Transplant experience and blog

Post by steevo » 01 Dec 2010 12:21

Hello, I asked Sophie if she could put the above experience on the forum for us, please feel free to PM for any more info.
Steve and Gill
Posts: 335
Joined: 01 Nov 2010 17:54

Re: Transplant experience and blog

Post by janetstanford » 02 Dec 2010 17:30

hi read your story with interest , i was diagnosed with mds two and half years ago and several times have discussed a bmt with my doctor still on hold , i have transfusions every 4 weeks and i do agree you do get tired of what seems like a rollercoaster up and down energy levels difficult to cope with at times i do totally understand your choice
good luck hope all works out for you.

Posts: 2
Joined: 30 Nov 2010 20:35

Re: Transplant experience and blog

Post by steevo » 29 Dec 2010 09:17

103 days post BMT.
I can now start getting out and about a little.
Had a couple of problems, my ankles are swelling up a bit on an evening, and I have a rash on my legs, which I think is GvHD.
I have water tablets for the swelling and cream for the rash.
My hair is growing back well, and now you cannot see my scalp, but it has got quite a lot of grey in it. I still tire easily, and have quite a few random bruises on my arms.
My cyclosporin dose continues to be reduced, I am down to 40mg now, but the hairy side effects are still there, much to the amusement of my hubby - he says I am going to look like Bigfoot!!
Still going over to St James's, and also still having to have blood.
I had a Bone marrow biopsy before Christmas, so this Friday I will hopefully get the results and we will see how I am getting on in the marrow dept.
Hope you all had a good xmas and may I just wish a Happy New Year to you all.
Posts: 335
Joined: 01 Nov 2010 17:54

Re: Transplant experience and blog

Post by janetstanford » 29 Dec 2010 17:47

:D good to hear things going well getting better so glad to hear good luck for friday
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