Keeping my eye on the ball

One of the vulnerabilities for patients after a donor transplant is Pneumocystis pneumonia (PCP). According to Wiki: “Pneumocystis is commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer, HIV/AIDS and the use of medications that affect the immune system.” Wiki also says: “The mortality of untreated PCP is very high.

For these reasons, they give transplant patients prophylactic (preventive) antibiotics for the first six months, when we’re most susceptible to PCP infection. For most patients, this is in the form of Septrin (co-trimoxazole), or as one of my leukaemia buddies calls it, “the Monday, Thursday tablets” because she had to take them on Mondays and Thursdays.

Septrin is in a group of antibiotics called sulphonamides, to which according to my medical records, I am severely allergic – apparently I had an anaphylactic reaction. That’s scary! I remember nothing of it, but here’s the strange thing… When I was a child, I had regular chest infections, which I am pretty sure they treated with Septrin… without any repercussion. However, given the medical note, it was wiser not to take that risk, so I had the alternative: Pentamidine, which has to be administered by a nebuliser, rather than tablets.

The day before the stem cells were transplanted, I had my first Pentamidine nebuliser, or as the nurses call it, “Pent neb”. I wrote about it in ‘Stem cell transplant details‘. There was an issue with the drug not completely dispersing that first time, so Prof suggested that instead of waiting four weeks for my first out-patient Pent neb, I should have it in two weeks, which I duly did.

After that, it was supposed to be four-weekly. I had the first two on 31 May and 28 June, but after that, I didn’t realise that I needed to book the next one and no one reminded me. I think I was expecting the doctors to tell me each time. In September, I realised I’d not had Pentamidine for a while, so at clinic I asked what was happening with it. Dr Jenny was surprised that I hadn’t had it since June. I promptly booked one for the following week and continued for two more months.


I learned a valuable lesson though… to keep my own eyes on my ball. Not always easy with mental fatigue, but it wouldn’t be a doctor or nurse in hospital if I had contracted pneumonia, so the buck stops here.

There is nothing painful about having the nebuliser, but it’s not much fun either. I had to sit in a tiny room on my own. No one, not even nurses, can come in while it’s on, or for two hours afterwards, as it’s cytotoxic. Fortunately, it’s a good time for reading or using my computer – thank goodness for the hospital wifi and the lovely Shaniece, the receptionist who regularly gets me a guest log-on from the IT department. In fact, I’ve written a number of blog updates in that chair.

Pentamidine nebuliserThe worst bit is that holding a plastic mouthpiece in my mouth for up to an hour causes dribbling… I quickly learnt to take a handful of paper towels into the room with me to wipe away any stray saliva. It was either that or dripping on my MacBook and books, not to mention the drool stains down my front. How very attractive!

As you can imagine, I was happy to no longer need it after 29 November. Not that you can tell from this photo.

When I was in hospital two weeks ago, they did blood cultures to check if I had anything nasty. This week, Dr Jenny told me that everything they’d tested for was negative. So even more than no longer having to have the nebuliser, I am very happy to report that, despite the missed nebulisers during the summer, I have remained pneumonia-free. Yay!

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14 Responses to Keeping my eye on the ball

  1. cat54 says:

    yay indeed! carry on carrying on.


  2. Enrico Crocetti says:

    Dear Jet, I continue to read your posts and appreciate the information they contain. You are in my prayers.

    Sent from my iPhone


  3. MakingSpace says:

    First, hooray!

    Second, you look perkier playing croquet than you do nebulizing. heehee


  4. pauline selston says:

    hi jet, god youre so brave and so cheerful most of the time, or to the world you are, you are braver that me. I have just discovered a white hard lump on my tongue, and i’m convinced it’s cancer! My GP is sending me to swansea hosp for a biopsy with the experts, but every day is a living hell worring about it. I have seen the info about it on the net, the treatment is horrendous, and my barratts esophagus’s treatment once it turns cancerous is equally diabolical, i am consumed with it all. I will have to kill myself when it all gts too bad, as i am not willing to suffer the invasive horrendous treatment. i have never had a good life and now feel ready to exit . sorry to depress you but needed to talk about it. only miranda knows, cant bring myself to tell my other children yet. there’s no uses saying it might not be cancer, i have been a drinker and smoker for fucking years, so am an obvious candidae. maybe they can catch it in time, i dont know, but i have to WAIT for my urgent appointment, if i was private, i would have had the biopsy by now, they talk about early detection, but then don’t have to availability to give you an appointent for god knows how long. i am depressed beyond belief, which makes me want to smoke and drink more, that’s why i did in the fucking first place. BFN


    • Jet Black says:

      Oh Pauline. I’m so sorry to hear you’re in such a scared state. It may come across that way but I’m really not “so brave and so cheerful” a lot of the time. It’s not fake or being positive, it’s just dealing with it, maybe some denial cloaked in humour and possibly good writing skills?

      I so appreciate your friendship and want to support you any way I can and I really hope you don’t kill yourself or give up on the good stuff. You have a lot of friends who’d miss you terribly and love you lots. I would miss you terribly and love you lots.

      I’ve no idea what the treatment is like for your tongue or oesophagus but it may not be as horrendous as you imagine. The fear may be worse than the reality. I wish you strength, health and love. Now put that bottle down and get painting or writing. Love x


  5. Elizellen says:

    Your post brought back many memories, Jet,and not particularly happy ones either, except for being overjoyed when I was told no more sessions were needed!!



    • Jet Black says:

      No, that’s one thing about treatment, it could never be considered ‘happy’, eh? Although I must say, the Pent neb was really not so bad, apart from the dribbling. 💦😳
      Glad it’s over for you too.


  6. That is very good news Jet! Hurray!!
    Carole Leigh


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