Colin O Driscoll

The hospital doing my follow-up gives patients a plastic toolbox divided into small square compartments, like the ones for keeping different kinds of screws and nuts of bolts. You just label the individual compartments.

I also have a weekly medicine box with 7 trays. Each tray has a morning midday and afternoon compartment. It’s ideal for short…[Read more]

OK Thanks. That makes sense.

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Have they explained why you have a tracheostomy tube? I came out of surgery with some drain tubes that were removed after a week or two.

Rehabilitation can take time: my hospital has a program of in-patient rehab, recovering the ability to walk and your sense of balance, followed by out patient rehab gym…[Read more]

Dear Darrin,

It is painful. I have had it done a couple of times. Since oxygen saturation can be measured with an oximeter on your finger, I asked the nurse what it was for. She said that the oximeter values are not very accurate, particular if your saturation is below normal, and it can be used to measure carbon dioxide build up, which is bad…[Read more]

Hello.

I had my double lung transplant on 11 October 2021 after 7 years of diagnosed HP which had been gradually getting worse and an infection which destroyed a large part of my remaining lung capacity.

I was on 10 litres per minute of oxygen in intensive care and was told that I would not be leaving, except with a new pair of lungs.

Here I…[Read more]

My medical support has told me to avoid turmeric because of its interaction with immunosuppressants. I had a transplant 10 months ago.

Dear Joe,
I wouldn’t worry too much. An FEV of 122% means that you are doing better than average for your age, as also indicated by things like being able to do an 8-minute mile. I would just ask for regular monitoring, say every 6 months, just in case there’s a problem.

Even if you have an ongoing PF, the decline time varies a lot. I had CHP…[Read more]

Before my transplant, I suffered from CHP, another type of PF. As the condition progressed, it became more and more difficult to breathe while lying flat. A couple of pillows definitely helped.
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My double lung transplant was in October last year. I am currently halfway through a rehab program.

On some of the issues raised:

I had chronic HP, which is a form of PF something like IPF as far as symptoms and prognosis is concerned so my experience might be relevant to others. I had been following a rehab course to improve my general overall…[Read more]

I had CHP. I have had bronchoscopies where they take small tissue samples and with lavage (washing one lobe of a lung with saline to pick up what the immune system was up to.)  These have been done under varying degrees of sedation (from nothing apart from local anaesthetic through to being virtually out with no recollection). None of them were…[Read more]

Hi Kris,

I can only tell you about the prep here in Belgium, which are similar to elsewhere in Europe. I imagine that it doesn’t differ too much from the US.

Health screening
There are a whole series of tests to ensure that you are reasonably healthy, apart from your lungs, and that you don’t have pre-existent conditions that could flare up due…[Read more]

I have had similar problems to David’s with side effects from immunosuppressants since transplantation, which was around 6 months ago. Health providers try to gradually reduce the dosage of some drugs, but that has not gone very far with me yet. Any research on reducing or eliminating these drugs would be very welcome.

Cancer is quite common, due to the immunosuppressants. Fortunately, most of them can be treated if detected early enough. This is why regular follow-up is crucial, as is prevention, such as taking precautions against sunburn.

Chronic rejection is a common problem later on. There are some drugs that will slow it down