I have Cystic Fibrosis and this is my experience of getting a lung transplant.
Friday, 20 November 2009
I had a comment on my last post from Mitch, in the US, who is about a month ahead of me in his CF/Tx experience. Hi Mitch and welcome to the blog!
In a blatant copycat move, having read Mitch's recent posts, I'm uploading a photo of my pills. The eagle eyed among you might be able to make out or guess the branding of the tray on which the drugs sit - Marlboro - ah the irony!
As you can see there are just a few different meds. At last count it was 20, but there is one more I need to add in when I feel my stomach is sufficiently settled to take it, because it tends to interfere in that area.
So, for the nerds, here's the list:
Neoral (cyclosporin): Immunosupression. Huge pills. Taste very bad, give me the shakes. Cellcept (Mycophenolate): Immunosupression. Take with food as give you diarrhoea. Prednisilone: Immunosupression, steroid. Make face puff up, give you osteoporosis. Nasty yet very effective drug. Used to counter bouts of rejection by giving high dose IV version. Will taper off and hopefully eventually stop this drug. Alenronic Acid: This is an anti-osteoporosis tablet that is needed when you're taking prednisilone. Omeprazole: Antactid to try and control acid reflux Paracetamol: 2 tablets, 4 times a day. Essential! Tramadol: Opiate pain killer - mainly just using overnight now Itraconozole: Anti-fungal medication that will stop in a few weeks. I think this is against Aspergillus which is a fungus that can colonise the lungs, so they use this to avoid getting it in the first few weeks where things are very susceptible. Furosemide: Diuretic (water tablet). Makes you wee a lot! Designed to keep the body free of any post-op fluid build-up and to keep the lungs nice and dry. The docs are forever examining your ankles to see if they are swollen - mine are ok. Downside of this one is it tends to flush out electrolytes such as magnesium and potassium - this is possibly what contributed to the heart rhythm problems I was having. Amiloride: Another diuretic, but this one 'conserves potassium' Metocloprimide: Anti-sickness pill - have pretty much cut this one out now. Aciclovir: Anti-viral medication against the cold-sore herpes virus which is apparently a risk. Depending on screening tests on me and on the donor organs you are either given this or another drug. Not sure if this one stops or is a permanent thing. Cotrimoxazole: An antibiotic, tradenameSeptrin, which is used to protect me against a specific pathogen - this will be permanent. One pill a day. Magnesium: Supplement to keep levels right - may stop or may continue depending on my levels when I stop the diuretics. Aquadek: A CF specific vitamin supplement - will stay on this one. Calcichew: A CF calcium supplement - will stay on this also. Creon: CF enzyme drug to enable me to digest food as the pancreas doesn't excrete enzymes in CF. Nystatin: An anti-fungal mouth wash thing that is to protect against oral thrush, a side effect of the prednisilone steroids. This will stop as the pred dose is reduced. Colomycin: Nebulised antibiotic - will hopefully stop if the results of the next bronchoscopy and biopsy are good. There is a chance it will continue permanently if the lungs show a tendency to hold a low level of infection. Salbutamol: This is ventolin - same as asthmatics use in their blue puffers. I do this nebulised to keep the lungs open as the colomycinneb tends to make you tight - should stop when the colomycin stops. Ursodeoxycholic Acid: This is the one I haven't yet started but will need to be on permanently. This is to do with CF-related liver disease and preventing its progression. CF blocks little ducts with sticky mucus - hence the pancreas problem - but this also applies to the ducts that secrete bile from the liver. The Urso is used to keep these open and halt the liver disease progression.
So, there you go - haven't you learned a lot today?
I am a 35 year old CFer married to Vicky and living in Cambridge, UK. I had a double lung transplant in October 2009. This blog follows our ups and downs through the pre- and post-transplant experience, as patient and partner.