Transplant blog

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

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sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Transplant blog

Post by sophie » 17 Dec 2009 15:58

We are posting here a series of email messages from a patient about to undergo a Bone Marrow Transplant.He has been keeping his friends and myself updated on progress.
I thought it may be hepful for other people as well.
The patient has given us permission to post these on the forum anonymously.

He has also emailed me some background information.
His exact MDS diagnosis is RCMD - Refractory Cytopenia with Multilineage Dysplasia.


A little history might make more sense of my transplant experience:
I was a reasonably healthy 56 year old having to bring in coal and chop wood for my old fashioned home heating systems when in mid-March 2009 I found it impossible to finish cleaning my admittedly filthy car. I was puzzled by my apparent sudden loss of fitness but not overly concerned at that point. Soon after I walked up a hill and found that I was having to stop every few yards to rest a short while and now I felt that this was really unusual. When I got where I was going I was variously told I looked awful or very grey and told that perhaps I should see a doctor. I managed to get an appointment for that same evening and the first tentative stab at a diagnosis of my problem was that I had some sort of circulation problem. I was booked for blood tests the following week and again attended my GP on April 1st for the results. He announced that my haemoglobin count was down at 8.5, my platelets around 55 and that the white blood cells were also showing some abnormalities though the counts were within normal ranges. April Fool!

My immediate reaction was blind panic - I had a blood cancer, probably leukemia and wouldn't see the summer out. I shocked my 4 siblings by ringing them all in the following days and telling them my only chance was a transplant and would they get tested to see if they could be a donor for me. I was swiftly referred to see a haematologist at my local hospital a week later and told that in all likelihood I had MDS but further tests, the bone marrow aspirate and trephine procedures, would confirm this. I was however immediately booked for a red blood transfusion the following day. I think I was given 2 units that first time.

My state of mind for the first month until the diagnosis of MDS was confirmed in early May was not good but during that time I completely came to terms with the idea that this might be it for me. I was already on regular red blood transfusions every three weeks but the frequency and quantity of blood I needed increased gradually until I was on 2 or 3 units every two weeks by the time I went in for the transplant in late October. My life was reduced to a cycle of relative fitness immediately after a transfusion followed only a few days later by an inevitable decline to extreme lethargy as the haemoglobin count fell off rapidly. I was lucky though that I had no infections during the whole time as the white cell counts were holding up so well. My platelet counts dropped fairly swiftly to the 25 where they stayed fairly steady for the next few months so I also avoided platelet transfusions.

In June I saw a second consultant who told me the mean survival term was three years and advised me to go home, take it easy and get a good relationship with my GP. It was only when I got home that I realised I was being written off. I decided that I wasn't going to take his advice but would fight to get a transplant. I have a ten year old daughter and it just wouldn't be fair for her to have dad whose health would gradually deteriorate. So when I saw a third consultant the following month I wasn't taking no for an answer and got a referral to Bristol Children's Hospital which has an Adult BMT Unit and enormous experience in this field. He was reluctant all the same and warned of the complications that could occur all of which, as he put it, started with a capital D.

During the summer my siblings were tested for compatibility and miraculously two of them were ten point matches for myself. They were also both negative for CMV, as was I, which was another box ticked. The omens seemed good. When I saw the consultant at Bristol I expected to have to persuade him but at the end of a lengthy 4 hour consultation he said he would put me forward for a 'mini' transplant, subject of course, to a barrage of tests for my own fitness.

The mini transplant involves what is called reduced intensity conditioning, the term for the chemotherapy that would knock out my own bone marrow prior to the transplant. The full intensity conditioning had an the upper age limit which I was quite a few years beyond. In fact I am only a few years short of the upper limit for reduced intensity conditioning. The implication was that it wouldn't necessarily knock out 100% of my bone marrow and left open the possibility that there might be a return of MDS at a later stage.

I sailed through all the tests for heart, circulation, lung function and so on despite having been a heavy smoker for 35 years until I gave up five years ago. I couldn't have asked for more. There was a false start in early October when I was booked to be admitted to Bristol and I was told in the early afternoon that I was to go in the next day and then received another call later that same afternoon to say that there was a hitch so it would have to be postponed.

In the last week of October I was fitted with a Hickman line which makes access to my blood stream for the innumerable blood tests and infusions I was to undergo. Although good enough for very careful living, a platelet level of 25 was not high enough for the surgeon and so I was given a transfusion immediately before the procedure. It was now that I discovered I was allergic to platelets and as I was wheeled back to the ward after the operation I saw in the mirror at the back of a lift that I had huge hives all over my face. They disappeared after a few hours but during my stay in hospital when I was given platelets on a number of occasions I was given a cocktail of pre-meds to avoid the problem.

When I got back from the hospital I received a phone call from Bristol to say that a bed had come available and could I be ready to be admitted two days later. Yes,definitely. My brother had already been harvested of the stem cells that were going to be infused into me. This had involved him in four days of injections of a growth drug in four sites around his waist to boost the production of stem cells by his bone marrow. So many of these are produced that they flood into the blood stream so that, with a line in both arms they can filter off the required stem cells and return the rest of the blood to him. He endured 4 hours of this on two consecutive days and produced a bumper crop. Enough remain after my transplant to be used at a later stage should that become necessary. These were cleaned and then were frozen in preparation for infusion into me on the day after the completion of my conditioning.

Which is where the emails to friends and family began.


Starts here:

9th Oct 2009
Hi again
The hospital just called to postpone the transplant for a couple of weeks. Just to double check a couple of things. False start....
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:00

30 Oct 2009Hi All
This time I'm sure. I'm in, though I'm still here at home - I will stay at the hospital from Sunday. I had short chemo sessions yesterday and today and have the same doses tomorrow & the day after, with the two longest sessions on Monday and Tuesday. The infusion of 416,500,000 stem cells happens on Wednesday. The donor has really done the business and produced a huge crop that should ensure a swifter engraftment than otherwise. All systems go.

x
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:01

4 Nov 2009Hi all
I moved into the isolation ward around midday and have just finished being 'infused' with donor's stem cells and thus far nothing adverse to report. Still got all my hair but contemplating taking the clippers to it before it comes out in clumps. Feeling fine despite the fact my bloods are at all time low. Of course, because my own bone marrow has been taken out, but they are fixing that now with drips of platelets and red blood cells. Drip, drip, drip!
I'll be in touch later.
x
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:03

11 Nov 2009
Hi All

Thanks to everybody who has emailed me in the last week and apologies for not responding to everybody who did. It's been a long seven days and suffice to say that some of it has been real rubbish and some worse still. But I'm still progressing well, the docs say, despite the fact I have a streaming cold at the moment. This may or may not be flu but feels very mild if it is. Results tomorrow.

The stem cells will have homed in on my bones early on after infusion and are now apparently nesting. This sounds very cosy and I think means that they need to form a viable mass of bone marrow before they get to work producing blood cells again for me. Once engraftment is achieved somewhere between day 10 and 14 my levels should return to reasonable levels within a few days I'm told. White blood cells in particular should rise from current negligible levels and offer me some protection. Of course this isn't the end of it. I am being given immuno-suppressant drugs which will subdue the immune system of my new bone marrow (actually donor's - DNA, blood type, T-cells and all) so that it does not reject my body, so called Graft versus Host and is obviously a delicate balancing act which takes some time to resolve.

Not a lot else to report from isolation. The weather looks cold and miserable though I'd far rather be in it than here,or even home in front of a fire. Obviously. Next week may be even less fun than so far. I hope everyone is well out there.
x
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:05

11 Nov 2009
In response to my request to post his messages:

Hi Sophie
That sounds like a good idea. If you want to post what I send out then you're welcome to but I would prefer it if remained anon. it will be another few days to a week before the Neutrophyls start being produced so the next days will be the worst.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:05

11 Nov 2009
In response to my request to post his messages:

Hi Sophie
That sounds like a good idea. If you want to post what I send out then you're welcome to but I would prefer it if remained anon. it will be another few days to a week before the Neutrophyls start being produced so the next days will be the worst.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:08

17 Nov 2009
Call me a baldie (and I will kill you)
I was always quite attached to it, had it ever since I was very small and now it's gorn.... I had been able to pull it out quite easily over the last 48 hours and at first I swear I dropped a few years as the grey hairs seemed to come out easier. But it was beginning to shed itself willy nilly so one of the lovely nurses came and clipped me just now and all those childhood scars (riding a bicycle into an apple tree, falling out of another one) are on show. I half expected a tattoo of some kind but that must have just been a bad dream. (SKINS, or somesuch). Daughter is planning to sew a small cuddly toy and stuff it with my hair........ hmmmm

As a treat I have been given double cornish icecream with a strawberry sauce.

Not only that but over the last couple of days the white blood cell counts have started to rise. Very slowly now but over the next few days I expect they will improve more and more. As well as that, the antibiotics they have been pouring into me over the last week are evidently doing their job and the infection levels in my blood are dropping and my temperature is back to near normal. So all is good.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:09

20 Nov 2009
Day 16 and all is well apparently
Just when I was getting nicely institutionalised, with a bevy of nurses looking after me, the Prof walked in just now to tell me he will be throwing me out on Monday or Tuesday. Apparently I am doing that well, blood levels rising fast, he can't justify me being in here any longer. The white cells are lagging a bit so he may give a booster to get those levels up but basically he wants me out of here.

So that's good. Next phase is to spend 2 months in an apartment nearby, close enough to be whipped back in should I get an infection, but where I can be visited if anybody is passing by. I've lost about 7 kilos in the last couple of weeks so will need to get some of that back on again. Chocolates and icecream is my chosen method.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:11

24 Nov 2009
I'm out!
Early release it feels like. Things couldn't have gone better to this point and it is quite difficult to even remember the bits that were crap. I wouldn't recommend it as a way to lose weight but I now weigh what I was before I gave up smoking 5 years ago. I am a little wasted and tired and will need to recover a fair bit of fitness but I feel really good. Yesterday I was given a booster drug that took my Neutrophyle count from 0.35 to 5.79 overnight. This at least will give me something to fight with should I get something. The low immune system does mean that I could catch anything that was floating by and I have now to keep on this clean diet. Even that's not too bad really except that I can't have scrambled eggs.

I'm in this fairly comfortable flat and would be able to go out for a walk in the park if there was one. I'm not keen to catch anything that might set me back so will be very careful about getting out there but it is the centre of town so it would be hard to avoid the masses of people. I hope some of you can visit if you're around here, lurgy free and have no recent contacts to anything infectious. I have beer. The address is: (removed)
x

Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Transplant blog

Post by sophie » 17 Dec 2009 16:13

5 Dec 2009
Update 31/100
Hi All
Just to let you know all is going well. I had to go back to hospital for a couple of nights last week because a blood culture from one of my transfusion lines showed an infection. So I was given heavy duty antibiotics and when they discovered exactly what the bug was they put me on a course of a specific IV antibiotic. Luckily it didn't get into my system so it has all been precautionary.
They also took a test sample 3 days ago for a chimera blood test. This is to see what percentage of my white blood cells are from the new bone marrow and if any is from the residue of my old one. A few days before the result comes back but of course they hope it is 100% donor's DNA.
I hope you're all well.
x
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

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.
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