Yes, transplants are done in the UK. Start your search by look at the NHS site

https://www.nhsbt.nhs.uk/organ-transplantation/lung/

Hi,

ECMO is used where the lungs are no longer capable of exchanging enough oxygen and carbon dioxide, even when using HI-FLOW or intubation. It is used sometimes during a transplant operation if the lungs during the operation cannot meet respiratory needs.

 
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Yes, I mentioned the restrictions simply for patients who are not yet transplanted. I entirely agree that the restrictions are worth the improvement in life quality.

As for differing advice, different health providers have different views. It’s a matter of subjective judgement. For example, one consultant told me to give up using turmeric in… Read more

Yes, people tend to think an organ transplant is like getting and fitting a spare part for your car.

There is an enormous difference. For the rest of your life, barring advances in medical science, your immune system is reduced to a basic level which provides a first line of defence, but that’s all.

So besides immunosuppression you need to… Read more

Gavin,

Best thing is to start screaming loudly at your health provider. The progression of PF diseases is unpredictable. I was OK until I had an serious exacerbation and ended up in an ICU, followed by an emergency lung transplant.

Having sats below 90, tachycardia and a really low long capacity is a reason for getting monitorwd closely… Read more

It’s confusing because ILD and PF are blanket terms covering a whole range of different diseases, with a lot of uncertainty about outcomes. ILD is interstitial lung disease, which is anything that attacks the tissues between air sacs. PF is pulmonary fibrosis, which just means lung scarring.

For example, IPF is progressive and… Read more

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… 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… 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… 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… 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… 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… 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… 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… 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

I lost 20 kg (about  45 pounds) to reach the required BMI for transplant. This was mainly through dieting. I have always liked food, but given the circumstances, dieting was surprisingly easy.