T + 337 Wot No Flu? (PG)

Posted by raetsel at Wednesday, August 19, 2009

Rated PG for discussion of vomit and pictures of rash.

After being discharged by the doc at about 11:00 last Monday due to waiting for tablets I didn't get to leave the ward until about 18:00. My ever present Taxi driver, Dad, came up during normal visiting at 14:00 and stayed with me whilst we waited.
It was a bit odd that, like the nurses who came into my room, he had to wear an apron and a mask:-

even though we were going to be driving home together once I had my meds. I guess the idea was just to stop it spreading on the ward I was on.

When I got back to the flat it looked liked I was not the only resident of College Road who wanted to take precautions (thanks Gareth ;o) :-


That evening I took my first dose of Tamiflu along with a ham sandwich. The leaflets warn that nausea and vomiting are common side effects of Tamiflu but usually only with the first dose and that effect is reduced if the tablets are taken with food. However all was well and I thought I was going to be ok.

The following morning I took my usual morning meds and then with breakfast I took my 2nd dose of Tamiflu. Half an hour later I was being sick and up came my frosties, along with, by the taste of it on the way up, some of my other meds.

This presented a problem as I would need to be able to keep my other meds down long enough for them to be absorbed. I tried a few sips of water and that came back about 10 mins later. I retired to bed for an hour and then tried some more water. This stayed down so I then took an anti-sickness tablet ( ondansetron) and waited an hour for this to take full effect. This is the first time in all my treatment that I have had to take anti-sickness outside of the hospital.

The anti-sickness did the trick and I was able to eat and take my next dose of meds in the normal way. So that set the pattern for the five days , take an anti-sickness twice a day an hour before having Tamiflu with food.

I have been up and down over the last week at times feeling queasy, low energy, unable to concentrate etc. and other times feeling ok. My temperature however has been back to normal throughout.

I have not logged on to work since the Sunday before I was admitted on the Monday and that is prolly just as well as concentration has been hard. Today was the first day I felt like reading a book. Instead I have been letting the Sky Plus box be my constant companion and let the TV wash over me. In particular I have caught up the 5th series of House which is tremendous fun though whenever they talk about bone marrow or GVHD I flinch at the gross errors they make.

Today I went to the transplant clinic for a follow up from my last appointment two weeks ago. From this I got the results from all my tests whilst I had been in hospital. My blood was clear for bacterial infections and I did not have any sort of flu (swine or otherwise ). There was however a "patch of infection" on my chest X-ray and it was prolly a viral infection I had/have. This is medical speak for "we don't know what you have but you've definitely got something".

My neutrophil count was still low and so my consultant prescribed some of the evil GCSF injections that gave me a funny turn back in October. We did discuss with the doc treating me then I could try a different formulation of the drug to see if that worked better, however my current consultant was not keen on that as the other formulation is fiddly to administer at home requiring stuff pulled from two phials and mixed in correct proportions. She felt as I had been fine before the transplant my reactions were probably because it was so close to my transplant ( only a few weeks in fact ) so could I try them again? She said I could get her struck off the medical register for being mean if I had more reactions.

I'll be taking my first injection tonight and hoping I feel ok. To avoid a psychosematic effect I am thinking positive and focussing on the bone pain I'm going to have when the drug starts taking its effect in a few days :o)

I'll be back at the clinic in three weeks when I will have a follow up chest X-ray. There is no point having one now apparently as the spot of infection can remain on X-rays quite a while after the infection is gone. I'll also get the results of the CRP test which is an infection marker in the blood ( it was 44 last time and the normal level is below 10 ).

Finally we haven't had any grizzly pics for a while so in case you were wondering what GVHD looks like, here it is:- (Click to embiggen).










T+329 Back in hospital

Posted by raetsel at Tuesday, August 11, 2009

Yes a live blog posting from the QE hospital. It all started on Saturday when I woke feeling rough with absolutely no energy. then my anti-fungal medicine made me heave though I wasn't actually sick.

My temperature was a bit up at 37.6 more than my usual 36.5 but below the danger level of 38. Unfortunately I had to logon to work to help with the go live of a new server and my colleague (and now boss) was on holiday so there was noone to cover for me. I struggled through the changes needed in between spells in bed.

Sunday I felt a little better and my temperature was down to 37.3 but I still had no energy at all. Monday I started out feeling even better but after bringing the sainsbury's delivery upstairs and putting it away I felt worse again and had to go back to bed. I had asked mom and dad to pop over in the afternoon and when I got up to see them I had another bout of dry heaving with a tiny spec of blood in it (most likely from the straining + not fetching anything up) . I decided at this point as I wasn't really improving I should call the hospital.

The Transplant doctor asked me to come up to the day unit and whilst they waited for blood and NPA results (see medical glossary) she decided to admit me. There were no beds available on the transplant unit or haematology ward where I had been before but by 1700 I was settled in to the admissions bay on the Bournville Ward (still at the QE not actually in Bournville).

I had a reasonable night + feel much better today, must be the placebo affect of all this attention :o). The doc had prescribed me some Tamiflu just as a precaution and because of that I was moved to a single room which was all quite jolly until a nurse wearing gloves, apron and a mask came in with some bottles and a commode! I'm obviously not allowed to leave this room.

However since I started typing up this blog (which takes ages on the touch screen of the bedside terminal) the doc has been to see me + said my blood work was all clear apart from my infection markers were high ( 44 when the usual level is 10 ) so I obviously have or have had an infection.

I'm being sent home today on antibiotics and precautionary tamiflu whilst they await the results of the snot sample but it's not likely I have flu of any sort. I'm still not 100 percent and get tired easily but that is prolly steroid withdrawal symptoms like I had a few months ago. I'm going back up to 5mg a day from alternate days as my gvhd rash has come back a bit as well which is a disappointment.

Right time to pack whilst I await drugs from pharmacy. sorry for any typos it's this keyboard.

T + 323 I Forgot to Remember Not To Take my Tablet

Posted by raetsel at Wednesday, August 05, 2009

This morning I went to the transplant clinic for the first time in six months and it was, just marginally, a bit more unusual than a regular visit.


I had my bloods taken and then realised this morning I had already taken my ciclosporin which I am not supposed to do when I have bloods done as one is to measure the "ambient" level in my blood and this would be distorted by the morning dose. I was obviously out of practice going to the clinic.

Then through a convoluted sequence of thought processes which I won't go into here, I convinced myself I hadn't actually taken my ciclosporin and took my second dose that I would normally take at tea time. Oops.

I then went in to see the doc. She checked the skin on my chest and neck and said there was little or no evidence of Graft Versus Host Disease so we are going to reduce my steroids from 5mg per day to 5mg one day and none the next. Getting ever closer to coming off them.

My other blood results were the second unusual thing. My haemoglobin was back up to 11.2 from 10.6 last time which is very encouraging, looks like the folic acid is helping and I really might finally be making my own red blood cells. My platelets were also fine ( as they always have been throughout all my treatment, which is just as well for someone as clumsy as me ).

My white cells however, and in particular my neutrophils that fight bacteria were a lot lower than they had been. This can be a sign that my body is, or has been, fighting an infection and the doc asked me if I'd had a cold or been otherwise unwell. However I've been fine as far as I know. As the doc said "we treat the patient not the blood test" so she didn't plan to do anything about the low counts at the moment but did ask to see me in two weeks to keep an eye on it.

Since I need to have a proper ciclosporin blood test I'm going in to the clinic on Friday to have that done and a repeat of the blood count sent to the lab to see what my neutrophils are then. Sometimes the analysis machine they use in the clinic gives the occasional anomalous result.