I am now 97% donor cells and there is no sign of the diseased cells. I got the news from my consultant yesterday. It’s slowly sinking in but I have built up so much anxiety in the last months that it will just take a while.
My hospital visits are being reduced to 2 times a week. The best news is that I can see the children again as long as they are well.
It certainly looks as though the new cells have settled in!
Back in the hospital again. I had to come in last night because I have a virus that has been reactivated and I have to have intravenous medication to bring it down. Fortunately it is not at a very high level and I actually feel better than I have felt for a while.
The boredom and the waiting are the 2 most difficult things to cope with at the moment. I feel fortunate in that I am not feeling unwell.
This weekend is the Tour de France in Harrogate so I would have been spending the weekend alone in the house as a lot of the roads are closed around there and no one can get in or out. It has started already ( Friday) and it will go on through Sunday. Then we’ve got the Yorkshire show traffic all the following week so I am probably in the best place. I normally have to go to the hospital 3 to 4 times a week and I travel by ambulance so I would have been in traffic all week. Don’t know how long it will take to bring my levels down again so that I can go home.
I am 88% donor cells so hopefully this will gradually increase to 100% but it could take a long time. A lot of patience is required. I feel as if I am betraying my own cells by wishing them to go away!
Well yesterday I found out why I don’t feel as if I am connecting with my new cells. Had the bone marrow biopsy last Friday and got some of the result yesterday in clinic. Some of the diseased cells are still there. This was a great disappointment to me as you can imagine. The other part of the test is a chimerism test to see how much of the donor I am. The aim is 100 % but I think it’s clear that I am not that yet. That test takes another 2 weeks to come back and will be the biggest indication of whether the transplant has been a success or not. If not then I can have another one if the donor is willing.
Needless to say this is very disappointing news. I was quite shocked really because I didn’t see this coming at all. Theres a lot of what ifs and I don’t really want to think of them until I have to!
Had another short spell in hospital last week. My counts of potassium and magnesium were so low that the doctor did not want to send me home. It was supposed to be for a couple of days and ended up being almost 4. I got home on Sunday at 4:30 and ended up going back on Monday for another hospital appointment. Such is life at the moment.
Well I certainly need to cheer on my good cells at the moment. They are really taking their time to knock out and get rid of the old ones. Many thanks again for all your lovely comments.
Haven’t been writing because the days are all rolling into one and they are much the same. Hospital days are days of waiting for transport to get there waiting for treatment at the hospital or to see a doctor and then waiting for transport home. I don’t want to sound ungrateful for anything but there is a lot of waiting.
Most of the days I feel quite good although there are a few days where I feel a bit “off”. The hardest thing to combat at the moment is the feeling of being very low in spirits. I hesitate to call it depression because I think it is to be expected and it is easy to see the reason why. Life seems to be leaving me behind somehow and the recovery process is so long. I know I’m going to be like this for a long time. I still cannot be around people and almost the only time I step outside the door is to go to the hospital. I am not allowed to drive yet and don’t know when I shall be able to.
Having said all this I did get out for a walk yesterday and a short drive with my brother. It was a lovely day and it felt very good to be stretching my legs and sitting in the sun for a while.
I can’t seem to get very close to my cells these days. One day the count is high and then another day it drops below 1. So I still don’t know whether the new cells are comfortable in the new environment. At the 100 day mark I shall be having another bone marrow biopsy to see what is really happening. I am cheering them on as much as I can and trying to tell them what a great life we have to look forward to! Hopefully by the 100 days they will be well settled in.
Been back at the hospital almost everyday to day unit. This involves waiting around a long time for ambulances and taxis. When I get to the hospital I have blood tests taken and then have to wait agin for the results so that the nurses know what treatments I need for that day. It’s usually a long day but at least I am able to sleep in my own bed and eat my own food. This will go on indefinitely. On day 100 I shall be scheduled to have a bone marrow biopsy and this will tell how successful the transplant has been.
It is really fabulous to be home. On the way home on the first night my brother stopped at the supermarket to get groceries and I waited in the car. I opened the car door and felt the breeze on my face and heard the birds singing. Bliss. Home to a piece of toast and a cup of tea. Heaven.
I am not giving up on the blog. I’ve become quite attached to it and I know that there are people following who have either had a transplant or are waiting for one. I hope it will be useful to all.
From my cells and the former me. I want to say a big thank you to all the friends and family who have supported me through this journey. You will never know how invaluable your love and support have been to us.
Well just one more sleep and then home tomorrow. I probably won’t get out until late afternoon but I am sooooo……. looking forward to sleeping in my own bed tomorrow night.
The next day and everyday after that I shall be coming back for a minimum of 5 – 6 hours but that does not worry me at the present time. I intend to keep up my blog at home for a while as I don’t believe that my MDS story is completely finished yet.
Thank you again to all those who have supported me through this life- changing ordeal.
My cells are saying onward and upward. Let ‘s get on with this new life.
I’ve had some very unexpected down days and haven’t felt like writing but I feel very well today. The consultant is aiming to send me home on Monday and I am absolutely thrilled!
At first I shall have to come back everyday for my intravenous meds and shall probably be here from 4 – 6 hours. I suppose that will last as long as I need it. The hospital are arranging transport because they don’t want me to drive for a while. That is a little bit of a relief as the hospital is 45 mins from my home and more if the traffic is bad.
The thought of sleeping in my own bed and being able to prepare my own food and drink is heavenly.
Needless to say the cells are ecstatic!