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Wednesday, 19 October 2011

Day 13 post transplant – Home

Well I can’t believe how well I have done got through this transplant without any issues (yet). I’m going home today at about 3 or 4pm, I have to wait for  Amy my daughter and Charito to finish work before they can pick me up.

This morning I woke up with the pain in my back again, which is hardly surprising the way my bloods are working overtime at the moment, so that was expected.

I have my Cyclosporin reduced again to 275 as my levels were too high, another good sign thing are working properly. I had my shower before having my bloods taken today, I will wait to see what they bring back today. I’ve also had my Pentamidine which I have to go into a room on my own for as it is yucky stuff for anyone else to breathe in. I knew I was having all of this done this morning, so I wanted to get up early and get showered so I had everything sorted. I even had another good breakfast ready for me once I had finished my Pentamidine.

The staff here have all been wonderful as usual and I can’t thank them enough, I know I haven’t been one of these patients that keeps pestering them (I think!), but they have always made sure that they apologise if they couldn’t get to me straight away after buzzing etc. I know they have had some very ill people in and not everyone is going through the transplant process as well as I have, some people get all of the symptoms, such as sickness, mouth sore etc and I didn’t mind waiting while they sorted out the more sick patients.

It was funny this morning when I buzzed at 7:30ish for some pain killers. I was one if not the first to start the buzzing off this morning (once one starts everybody buzzes as usual). I said about being the first and the nurse asked if I had a good nights sleep, which in all fairness I did, apart from waking up a few times in pain with my back. We didn’t have the buzzing all night from the usual culprits, I know that one of the nurses was going to mention it to this particular patient about showing some respect for others and trying not to buzz throughout the night and keeping everyone awake. There had been a few people complain, including myself about not being able to sleep because of the constant buzzing going off. I have no idea who it was or which room they are in as confidentiality is very important here and they really do stick to it. So even if I knew every patient from the day ward, I would know if they were on this ward with me. I have told them though that I don’t mind people knowing or contacting me and to feel free if they wanted to let them know about my blog. If it provides some help in any way to someone else, then it has been worth writing all of this that I do. Back to the story, this morning when the nurse brought in my pain killers I asked for at 7:30 I mentioned again about my Pentamidine and I was going to have it yesterday, but then arranged it for this morning and wanted to make sure that the morning staff knew I was going to have it, so it wasn’t delayed and possible stop me going home this afternoon. I just had in mind exactly what I wanted to do today.   Alarm went off at 7, take pain killers, wait for them to kick in, have shower, take breakfast then Pentamidine, all sorted. I said this too the nurse and she said and manage the nurses schedule, or something similar. …. I really wasn’t trying to organise them, but I know how easy things get lost in the mix, so if did seem as though I was trying to organise them as well, I am sorry. I must be feeling OK to jump back into my managers head and go through check lists in my brain etc. Am I the only one that does this and write to do etc or am I really that strange… rhetorical question and doesn’t really need an answer before I get lots of ‘Yes’s’ in my comment box ;-)

One other thing I must comment on as well that I have mentioned and even complained about in the past. The cupboard room that they normally put people, you know the one I’ve mentioned that had the old TV’s  and Christmas decoration as well as a couple of bed for chairs for patients. Well I’m glad to say that has had some improvement and is looking more like a waiting/medical room now. It has some new chairs and all of the old stuff that was stored their has been removed. I was talking to the ward sister and have been told there are more changes going on with more storage space available to them.So I’m glad to see things moving along and getting better for the patients. It does make a difference knowing that we are in a nice clean proper place and not just stuck in a room that feels like a cupboard and pushed out of the way until required. It was almost a pleasure to have my Pentamidine in their today, in one of the relaxing chairs listening to music as I breathed Pentamidine in.

So now all I’m waiting for is my dressing to be changed on my line, my blood results to come back OK which I’m pretty sure they will and then to get picked up.

I will sort out all of my things soon as well, although that wont take long and I really need to the suitcase to do it properly so I might just wait.I will see how I feel after.

My next blog message should be from home where I will have a proper internet connection – Hooray – I’ve had nothing but problems with it here, having to disconnect and reconnect through tethering and wireless etc. How did we manager without the internet before!

See you at home x 


  1. Sean that is great news You have waited for this moment. It's all com'e good for you. Nigel too.
    C J

  2. So glad you were able to blog about this whole process. Though I know folks have very different journeys with allo transplants, you have taken some of the fear away for me if Tim ever does this with his sister's cells. I hope everything continues to go fantastically well!

  3. Intending your journey home is safe and uneventful and that once home your new cells continue to do the good work they are supposed to be doing, for the highest and best good of all concerned. I will continue sending Reiki energy daily for awhile.

  4. Oh no, they've tarted up the cupboard! ;D