Pentamidine the things they don’t tell you

I went to the hospital today to have  my Pentamidine for the first time. It is taken via a nebuliser as mentioned in my previous post. thought I was going down to the ward to have the nebuliser, when I say ward, you would have to understand the layout of the Oncology.  It is reception then down a small corridor of about 20 feet on the left some offices where we speak to the consultants and then the ward which (so called) consists of six beds then another room of that for transfusion ( a very modern room quite space age looking).

Anyway – it wasn’t on the ward, it was in the phlebotomy room, which I forgot to mention is just before the reception desk on the left as you go in. I normally have my blood taken in there prior to seeing the consultant. The reason they do in in that room is that it has an extraction unit that they attach the nebuliser to so that the first are not kept to minimal (first alarm bell ringing) she explained that because it is quite strong they don’t want to breath it in being a very strong antibiotic. OK I thought I can accept that.

I asked how long it would take – it is done in two parts, the first is ventolin to open up the airways and takes about 5 minutes. The second is the Pentamidine which takes about 10 minutes, but she said it’s basically depends on me and if I want to stop and start it (second alarm bell – why would I want to do that?)

she went on to say that the Pentamidine can feel as though it is burning the back of my throat if I take deep breaths (here we go … the bad news) but if I breath normally I should be ok (good to know). Next warning try not let the fumes get in your eyes as it may irritate them. They gave me some water and napkins as it will make your mouth dry.

Prior to starting the machine she showed me how to turn it on and   off. Very difficult you have to press the only switch on the box marked on and off! The next alarm bell was about to ring. After showing me how to turn it on and off, she said she would be leaving before I start it and closing the door. OMG how bad can this stuff be… I was about to find out.

Sure enough the ventolin was fine and nothing special I easily got used to breathing it in. Then when I came to have the Pentamidine it started off ok-ish the taste was revolting, they don’t mention that. After a few breaths it started to get worse it is completely disgusting. I know why they give you water and napkins now. If I had known prior to arranging it for today I wouldn’t have agreed to have it. Today is my Chemo day as well and on the anti sickness drugs but still feel queasy even when taking them and not really up for adding anything else that could make me sick. I had to stop the nebuliser several times as I thought I may puke and drank water and wiped my mouth with the napkins.

It took longer than 10 minutes to inhale it all, more like 30 or 40 minutes. She said once I finish it to just put it on the side and go home. I drank lots of water after finishing and I was shaking a lot as well.

I went to the cafe for a cup of tea and a bottle of banana milkshake to try and get rid of the taste in my mouth. Every time I coughed (again a side effect of the Pentamidine) I was nearly sick again. The taste has finally gone but it took a number of hours.

Next time I wont be having it on the same day as my Chemo – but it’s worth putting up with to stop me getting Pneumonia. Oh that was another thing she said that if I do get the Pneumonia most people die of it with Myeloma and don’t normally recover hence the reason why it is worth putting up with the yucky bits of having the Pentamidine!

Let’s hope I don’t come out in a rash like I did with co-trimoxazole