Wednesday, July 22, 2009

Treatment (Day 15)

The sore arm from yesterday turned into an incredibly painful arm overnight. The feeling is similar to a dead arm. It seems that the sodium stibogluconate (and saline) was leaking into the tissue around the vein when I was feeling the pain on injection yesterday. It's clearly worked its way up the arm through the tissue giving me the dead arm today. Hoping it will subside soon. Not wanting to take any painkillers as I want to know that the cause of the pain is disappearing rather than just the pain itself.

Fifteenth dose this morning was fine (in right arm just above that painful cannula) but the cannula has been removed to let my right arm recover. So without a cannula today.

I am grateful that the side effects are no worse than the occasional bout of tiredness or headache--discounting leaking of the drug. I just hope that the wounds start healing in the next few weeks. The larger one looks like it has been for the last month or two anyway but that is not related to this hospital stay. Cutaneous leishmaniasis lesions do heal naturally. The reason for this systemic treatment is to prevent any further effects of leishmaniasis, i.e., more lesions or moving onto mucocutaneous or visceral forms.

Tuesday, July 21, 2009

Treatment (Days 9-14)


No major changes. The side-effect of being tired/having a headache all the time seems to have slightly subsided but then I am sleeping until about 1pm every day after getting the sodium stibogluconate at about 9am. A different consultant (mine is in Cape Town at an AIDS/HIV conference) seemed to agree that the wounds were flaring up and not just infected today which is a good sign.

Today was the first time the phlebotoxicity of the sodium stibogluconate has been a major problem. You may remember me saying that that was the reason for the slow injection of it. A new cannula was put in my forearm a couple of days ago. First dose was fine. Yesterday's stung a bit, even the saline flush. Today's saline flush was incredibly painful and we had to move the cannula further up to the elbow. Fine there. Clearly that vein was slightly thinner or maybe the dose was given slightly quickly that first day. Right arm still quite sore.


Been up and down last few days. Down because not being fully with it all the time means that I can't read/learn/watch stuff that I would do otherwise. Up with the visitors I had over the weekend and having gone out into town this afternoon/evening.

Enjoyed a collection of Jeremy Clarkson's Sunday Times columns which a friend lent me. Didn't so much enjoy Lance Armstrong's It's Not About the Bike about his life and specifically his cancer. It's very difficult to like him through his arrogance. Only a hundred pages in and he does say that the cancer changed him so maybe he's trying to show how just much and will become more likeable later on. I imagine, and hope, so.

Picked up Jeremy Bowen's War Stories from the library today which is great. Nice follow-up to Jon Snow's Shooting History which was the second book I read in here after the Dawkins one, which was good but not as good as Ancestor's Tale.

I know you're not reading this to find out what books and films I like but I will give a mention to the excellent Dead Poets Society starring Robin Williams as an inspiring teacher encouraging his students to seize the day, something I'm trying my best to do in here!

Wednesday, July 15, 2009

Treatment (Days 6-8)



Wounds are flaring up as can be seen. Feels different to just a secondary Staph. infection so hopefully means that leishmania is present and this treatment is worthwhile.

Had my eighth dose today and feel as though I have a permanent hangover. The side-effects are kicking in then!

Tuesday, July 14, 2009

600 Words on Leishmaniasis and My Experiences

An article written for a medical student friend about the disease.

AS TROPICAL DISEASES go, a concise description of leishmaniasis has the ability to make you sit up and listen. The incredibly rare, potentially fatal, flesh-eating disease sounds like every gap year parent’s worst nightmare. Unheard of in Britain bar the small handful of soldiers and travellers who succumb to it every year, leishmaniasis does its worst damage, however, to the world’s poorest people.

Unable to get their hands on the expensive, under-researched drugs necessary to treat it, the majority of the twelve million people who suffer will have no choice but to sit back and watch as the protozoan eats away lesions on the site of the sandfly bite which, if left untreated, will spread. In some cases, the disease will spread to the throat (mucocutaneous leishmaniasis) or the internal organs (visceral) possibly leading to fatality.

Thankfully, I live in the UK and though it took five Manchester GPs four months to realise that the stagnant, unhealing lesions were not down to an infected hair follicle, I am lucky to have access to Infectious Diseases departments able to administer the sodium stibogluconate necessary to combat the disease. This highly toxic, eighty year old drug, which can riddle the patient with side-effects, is the best available as research money simply will not go towards treating a disease that infects people without wealth.

My own experience began with a lump near my groin and a dark patch on my lower back. Worried primarily about the lump, I saw a GP who told me that it was a swollen lymph node and nothing to worry about. The dark patch would disappear. A week later I was in A&E. The dark patch had clearly become infected and was now described as a crater. For the next four months, the lesion was dressed three times a week, initially with Aquacel which had no effect—the lesion quickly grew to 7cmx5cm which it has remained ever since—and then later with Mepilex Ag, a soft pad embedded with the antibacterial properties of silver. This cleaned up the Staph. aureus infection that had been making the lesion so painful and from then on, I would barely notice it.

It was not until a second lesion appeared that I had to persuade GPs that I needed to be referred to a specialist. A dermatologist excitedly but tentatively diagnosed it as leishmaniasis and referred me to Infectious Diseases. In the weeks in between consultations I learnt a huge amount about the disease. My consultant was keen to reassure me though unable to mollify some of my worries as the exact strain was, and still is, unknown.

As the treatment is so severe, doctors were not keen to give the twenty one daily doses of sodium stibogluconate by intra-venous injection without confirmation of the strain, or indeed the presence of leishmania. Biopsies were duly taken. A ten-week wait ensued which included the work of scientists in Manchester and London and then the country’s top histopathologist. When he came back with a null result, all other avenues closed and so the decision was made to begin the treatment, without a shred of lab evidence that it would help, and assuming that I had the most severe cutaneous form Leishmania viannia.

I’m now a week into the treatment and the lesions have begun to flare up, confirming that leishmania is present. Though it has been an agonising nine months, I realise that I am one of the luckier people to suffer from the disease and so would like to raise awareness of it, if only so that no one else has to be told for months on end that they have an infected hair follicle which will soon heal.

Sunday, July 12, 2009

Treatment (Days 1-5)


Today was my fifth day of treatment for leishmaniasis. The treatment is a slow, daily intravenous injection of sodium stibogluconate (Pentosam). Slow and diluted with saline due to its toxicity and the painful sensation that trails up the vein during injection and also due to the risk of thrombosis of the vein.

Thankfully I've not yet suffered any of the many possible side effects except being a little more tired than usual but that could just be because I'm in bed a lot and feeling lazy as everything is done for me.

Saying that, I've been out and about every day since Thursday (day two) even including a pint of Strongbow on Friday which the pharmacist and nurses reluctantly allowed me to have. I'm lucky to be on an Infectious Diseases ward though feel a bit of fraud in being here in that I'm up and about all the time and feeling otherwise as good as normal when the people around me have AIDS, malaria, swine flu and tuberculosis. The reason is that sodium stibogluconate apparently isn't licensed to be given anywhere other than this unit.

Only one of the nurses who has administered the drug has done so before. A few years ago she treated a soldier with the disease and said that he didn't have any side effects for the entire three weeks which is promising.

Had a few doctors and medicine students come visit wanting to see the wounds and have a chat. Keeps me busy and is interesting chatting to some of them too. Other than that have been brushing up on my spanish and reading the papers more than anything. Did pop to the library on Friday and picked up Richard Dawkins' Blind Watchmaker. I forgot (after reading Ancestor's Tale a few years ago) how good a science writer he is, even if people have little respect for God Delusion.



As can be seen, the main wound is slowly healing. The second, newer one, is the same as ever. Since Robert Darbishire stopped dressing them, I've been fairly good doing them and only when I've faltered has the second, smaller, wound become slightly infected. Inadine was used again by the nurses here the other day but today replaced that with the silver (Mepilex Ag) that has been so good since Christmas. Very impressed that neither Glastonbury or Barcelona caused any problems. Slightly worried that customs didn't pick up on the hundreds of pounds worth of silver in my hand luggage (the dressings), nor the scissors to cut it, deodorant, shower gel or toothpaste.

The cannula was initially placed in the back of my left hand which was okay but nowhere near as comfortable as the one placed today further up my arm. There is also much less pain on the injection of the sodium stibogluconate further up the arm. Rather than taking the fifteen minutes it has the previous four days, today only took about five minutes. It's certainly not a serious pain for which I'd like to take any further medication; it's just slightly unpleasant and, the first time, worrying not knowing how I'd react. Anaphylaxis and chest pains during injection are to be looked out for.


One potential side effect of sodium stibogluconate is that it can increase the QT interval measured by an ECG. Have been fascinated learning about the P, Q, R, S and T waves that denote different points in the heart's beating. Takes me back to A-level Biology. Learning about the disease itself over the last few months was stressful initially but later very interesting too. http://www.nhlbi.nih.gov/health/dci/Diseases/hhw/hhw_electrical.html

The guy in charge of the Guardian's response column is the same one that is leading my work experience there next month. He responded to the two letters below along the lines of "you raise some interesting points". It's been a bit long since the interview and he is slightly overrun with content at the moment (but space may become available) so no chance for a direct response, however, I may wish to speak with the paper's Health Editor when I get there. Will do.

Talking of Fogle, his 'On Thin Ice' is on BBC2 tonight at 9.05pm. It is the episode about the disease apparently. I imagine he will be on even thinner ice when I've seen what he has to say.