Friday, 14 June 2013

Prevention is better than cure

As you may remember, a week ago on Monday I was due another check-up and monthly dose of Pentamidine. Fortunately, the hematology clinic was really quiet that afternoon, hence it was all over and done with in a couple of hours or so. However, despite my hope that the run-of-the-mill cold I had would have gone by then, I wasn't that lucky, hence I also needed to have a mouth swab just to check whether the cold was something that could be treated; In all likelihood, the Prednisolone (steroid) dose that I was taking to sufficiently suppress my immune system to keep the skin GVHD from flaring-up was at the same time allowing the cold to hang-on in there.

A couple of days later, the results of the mouth swab came back, and they showed that I had two infections: Parainfluenza Type 3 and Respiratory Syncytial Virus (RSV). The former just has to run its course, but the latter sometimes requires treatment in patients such as myself, due to being immuno-suppressed, hence I needed to go into hospital for an x-ray and for a doctor to listen to my breathing, so that a decision could be made. My x-ray actually looked fine, but my breathing was quite crackly, hence the doctor was leaning towards wanting to treat it, but left the final decision with myself. Whilst I didn't particularly want to spend more time in hospital, it seemed like having the treatment was probably the most sensible option, so I had to be admitted.

The treatment for RSV is a drug called Ribavirin, which is administered via a nebuliser, i.e. the drug is aerosolised and then simply inhaled using a face mask. Unfortunately, it is a fairly lengthy treatment though, as to breath-in a full day's dose takes about six hours; Typically, it is prescribed for five or seven days. Personally, I had five days worth myself, before my breathing sounded fine, and I was discharged. However, even now (four days later), I still have a cough and runny nose. It does seem to be getting better though, and as of today my Prednisolone (steroid) dose was reduced from 30mg/day to 20mg/day, so hopefully that will help my immune system get on top of it.

The Ribavirin treatment was quite comical in a way, as the equipment used to administer the drug was really poorly designed: The tube connecting the oxygen supply blew-off on a few occasions; The cap on the canister/chamber where the oxygen supply aerosolised the Ribavirin popped-out at one point, which made it more like a Ribavirin cauldron as the drug then bubbled-out all over the bed and floor; The tube connected to the face mask would gradually fill-up with fluid, which I got an unexpected shower in with the first dose, and ended-up all over the bed and floor a number of times with later doses (when it slipped the nurse's mind what direction the face mask was pointing); and the seals between the various parts of the equipment weren't quite right, so deposits of white powder would build-up and flake-off. Also, to the amusement of those that saw me in there, the white powder would gradually build-up on my nose each day too, so I looked like I had been snorting cocaine!

Despite my expectation that there was a hidden camera in the room, and that I was secretly being filmed as some kind of Ribavirin equipment prank for a TV show, the closest that I actually got to any kind of entertainment was six long days of isolation with nothing to do but watch daytime TV, as the ward that I was in didn't even have the usual free WiFi access. I did think that the results of my skin biopsy would come back whilst I was in there, but I'm actually still waiting on those to confirm my recent case of skin GVHD. However, I did find out a couple of things of interest: the results of my chimerism test on day +102 showed that I was still 98% donor; and my hemaglobin and platelet counts seemed like they might finally be on their way up (unassisted).

For now, I just need to carry-on with the usual daily preventative medications, i.e. Phenoxymethylpenicillin (anti-biotic), Aciclovir (anti-viral), Posaconazole (anti-fungal), Prednisolone (steroid for preventing skin GVHD) and Omeprazole (stomach protection from the steroid), and some daily calcium supplements (Adcal-D3). The general idea being that prevention is better than cure. The anti-biotic is a recent addition, which one of the doctors thought might be beneficial given the infections that I've had in the last month or so, and the anti-fungal is an alternative for the horrible tasting Itraconazole, which I mentioned in a recent post, that also turned-out to be what had been causing my diarrhea like symptoms for a few months. Thankfully, the Posaconazole is much better, as, not only does it taste alright, it doesn't seem to be causing any side effects. I can understand why the NHS prescribe the Itraconazole by default though, as it costs just under £60 a bottle (lasting about half a week), whereas the Posaconazole costs nearly £500 a bottle (lasting about a week). As you can see from the photo though, the manufacturer was kind enough to throw-in a free measuring spoon with each bottle!

Medication - Posaconazole

My next check-up is due on Monday, where my blood counts and progress with tapering off the Prednisolone (steroid) dose, whilst hopefully continuing to avoid the skin GVHD from flaring-up, will be reviewed by a doctor. Also, to add yet further embarrassment to what now must be the most rearranged dental check-up ever, I had to delay that appointment by another couple of weeks (this time to the 27th of June) to hopefully give my immune system enough of a chance to finally get rid of the cold!

1 comment:

  1. James-you write so well and it is entertaining even though you are going through so much. As I have said before, your blog is an inspiration to others and I thank you so much for doing it.

    I'm thinking you are going to be taking a big box of chocolates to your dental appointment as a gift!