[CarolsymonsParticipant]

Hi

I have developed a hacking cough which has lasted for 6 weeks. I am 7 months post transplant and have had no infections prior to this. I don’t have a temperature, am on prophylactic penicillin and septrim and also just finished a course of clarithromycin (although I told the doctor I didn’t think it was an infection!) I have had a chest X-ray..no results yet but have read of other quite serious lung problems that can develop post SCT. Has anyone else had coughing and lung congestion and if so what tests should I be requesting when I return to the GP? On my first visit he mentioned nothing about possible complications from SCT, just wrote out the antibiotic script, so I don’t have much faith in him!

Carol

[CarolsymonsParticipant]

Well strangely it seems like I am the only patient to suffer lung problems adter SCT! Still no X-ray results despite my asking the surgery to fax the hospital urgently, but today have now been prescribed a decongestant! We will see what that does!

Carol

[MicheleParticipant]

Hi Carol,

Before I had my SCT it was explained to me that the Melphalan I’d been given was known to amongst other things, strip the lining from the inside of the lungs and that I would be put onto a drug to ensure I’d be protected from pneumonia etc.
It turned out that I was allergic to Septrin, so for a year after SCT I had a monthly nebuliser session to coat my lungs linings. It wasn’t very pleasant but obviously did the job.

When I asked why this was done, my specialist told me that before they realized the full extent of damage Melphalan did, a lot of people were catching lung infections and dying.

• This reply was modified 10 years, 3 months ago by  Michele.

[CarolsymonsParticipant]

Hi Michelle

I knew that pneumonia was a risk and am taking my prophylactic penicillin and septrim reluctantly but religiously. The thing is I don’t have a temperature, so it can’t be a bacterial infection. If it were a virus you would think 6 weeks is long enough to beat it. My blood counts were OK 2 weeks ago, so I am not neutropenic. I am so sick of coughing, but the GP seems less than interested in my health I am afraid! My daughter is a pharmacist and wondered if I needed inhaled steroids to reduce the inflammation, so that is the next thing I will raise with the doctor, if the decongestant doesn’t help. I feel like I have to be my own GP!

Carol

[rebeccaRParticipant]

Hi Carol, sorry to hear about your problem – I would never go to my Dr about anything I thought may be related to SCt etc and have been told I can either go to my GP or ring my consultant – I will never bother with the GP as how many patients do they have that have undergone SCT? I would at least ring the Specialist nurse to get their take on it. Once again, reading yours and Michelles response I feel slightly uneasy that I was on antibiotics for the 1st 3 months then nothing – have never heard of Septrim is that a type of antibiotic – I def didn’t have that. Now I wonder how my lungs will survive a winter at work without a helping hand – as we are similar in post months what is your neutrophil count as mine have only once gone above 2 but then dipped back to about 1.8 which they say is ok? but is just under range.
Rebecca

Rebecca

[MicheleParticipant]

Gosh Carol, I can’t believe how unconcerned your GP seems to be.
Fortunately mine is wonderful and if it wasn’t for her recognizing MM so quickly, I wouldn’t be at the point I am. She never minds me making an appointment to see her if I have any minor worries MM related or not.

The problem with Septrin for me was that within 4 days of starting to take it my specialist noticed that my liver took a turn for the worse and stopped it immediately. (Another fairly common symptom apparently).

I really think you need to get your cough sorted and see another doctor if necessary.

[finnParticipant]

Hi Carol

Sorry to hear about your persistent cough. It reminds me of my mycoplasma infection I had during the years before I was diagnosed with myeloma (I had lots of atypical infections). No fever but felt poorly and the constant coughing lasted forever. This bacteria is usually caught late summer/early autumn. Difficult to detect by labs as it does not have a membrane. Clarithromycin will work for this infection but you need a long, at least 10-day, course for it. Of course the cough can be caused by something else too but worth to keep in mind. Hope you will get it sorted soon. Best

 

[CarolsymonsParticipant]

Hi Rebecca

I have been told to take those prophylactic antibiotics for 12 months. Septrim is to prevent pneumonia apparently. Last blood test 2 weeks ago my neutrophils were 1.6. Not sure if they were affected by the cough I am still battling.

Carol

[CarolsymonsParticipant]

Hi Michelle and Finn

I finally got to see a haemotology consultant at the hospital (last time the GP could only do a phone consultation and prescribed a decongestant!) However despite no temperature the consultant has prescribed me 2 more antibiotics for 10 days! At first I wasn’t going to take them, but thank you Finn for your reply, as you have convinced me to take them. I am really concerned about this cough as I am returning to Australia in a couple of weeks and I am sure the stale air in the plane for 24 hours will not help the situation!

And can you believe it after more than 5 months after an offer on my flat was made, I still have no contract! I will just have to negotiate a sale from Australia as I cannot waste any more time of my already shortened life, sitting alone in London away from my family.

Carol

[dickbParticipant]

Hi Carol,

Although selling a house / flat is inconvenient, it is not hard to do from overseas. I sold a house last year, my solicitor was fine, everything was done over the internet and any important documents were signed and scanned before posting. I believe for most things except the final contract, a scanned copy is acceptable. My solicitor did release the money even though he tells me he shouldn’t have done on receiving the scanned contract.

[CarolsymonsParticipant]

Thanks Richard

Yes my agent assures me all will be well. I will just leave him with the keys in case this existing offer doesn’t eventuate and the property needs to be re- marketed. I can’t wait to be back home with friends and family and swimming in the gorgeous blue Pacific Ocean at Surfer’s Paradise, Queensland where I will live. I have read that people say if you are tired of London, you are tired of life! But after 8 years here, although I have enjoyed London and all it has to offer, I cannot wait to escape! And no I am not tired of life (whatever is left of it)

Carol

[Author]

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