Forum Replies Created

  • colin-o-driscoll

    Member
    June 28, 2023 at 9:06 am in reply to: ECMO

    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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  • colin-o-driscoll

    Member
    June 20, 2023 at 6:34 am in reply to: Unknown facts about lung transplants

    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 take a cocktail of drugs to fight off bacterial, fungal and viral infections and other drugs to counter the side effects of the immunosuppressants, such as osteoporosis, diabetes, vascular problems.

    There are restrictions on what can eat and what ye an do, one of them being gardening.

    Beyond that, you are more vulnerable to cancers, especially skin cancer, and eye problems.

    But at the end of the day, you are still alive and your overall queof life is greatly improved – no more gasping for breath.

     

  • colin-o-driscoll

    Member
    May 31, 2023 at 6:43 am in reply to: How to relax with severe breathlessness?

    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 rather than being fobbed off.

  • colin-o-driscoll

    Member
    May 9, 2023 at 1:24 pm in reply to: ILD PF and terminal prognosis

    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 eventually terminal, whereas other diseases such HP or sarcoidosis have variable outcomes. IPF stands for idiopathic PF. Idiopathic is doctor-speak for we don’t know what causes.

     

  • colin-o-driscoll

    Member
    December 28, 2022 at 7:30 am in reply to: Medication Storage & Transport

    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 journeys.

     

     

     

  • colin-o-driscoll

    Member
    November 24, 2022 at 11:00 am in reply to: Arterial blood draw

    Dear Darrin,

    It is painful. I have had it done twice. 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 for you and can make you feel out of breath even if your oxygen is ok.

    Having said that, every 6 weeks seems a lot. I have had it done twice in a number of years. For me, with PF, it wasn’t routine. Have you asked why?

  • colin-o-driscoll

    Member
    October 28, 2022 at 6:41 am in reply to: Successful lungs transplant stories

    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 am, just over a year later. I am in pretty good health, apart from a viral kidney infection that is being treated. I can now start looking forward to retirement, rather than dreading further physical decline from an incurable lung disease.

    The medicines regime, dietary restrictions, and being generally careful, are annoying, as are the frequent trips to the hospital that is doing follow up for me.

    But hey, I am alive and feeling reasonably healthy.

  • colin-o-driscoll

    Member
    August 26, 2022 at 9:06 am in reply to: What is your experience with Curcumin?

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

  • colin-o-driscoll

    Member
    June 30, 2022 at 1:00 pm in reply to: CT Scan Reads Compatible with Pulmonary Fibrosis

    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 before my transplant, and it had been diagnosed 7 years previously.

    Colin
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  • colin-o-driscoll

    Member
    June 30, 2022 at 12:29 pm in reply to: Sleeping with head elevated

    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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  • colin-o-driscoll

    Member
    June 2, 2022 at 1:51 pm in reply to: The Harsh Realities of Lung Transplantation

    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 fitness and I was feeling quite good, being able to function without oxygen except for some of the rehab exercises.

    Then it struck. I get pneumonia from an opportunistic infection which also provoked an exacerbation, that reduced my remaining lung capacity by a quarter. I was admitted as couldn’t emergency patient and transferred to an ICU. They tried high-low oxygen and a megashot of medrol and antibiotics to see if they could get some recovery. The condition stabilised but at such a low level that I couldn’t do anything without at 6 litres of oxygen and more normally 10 for any exertion (walking, washing myself, eating).

    They told me the only way out of the situation was a lung transplant and that I would be put on an emergency waiting list since my life expectancy was now very low.

    So I signed the consent forms and went ahead with it.

    Here I am six months later, at home and feeling fit and healthy. The operation itself wasn’t terrible, the main issue was post-op rehab, since you lose a lot of muscle tone.

    Immunosuppression is a pain because the drugs have side-effects and there is a long list of things that you cannot eat anymore. The hospital has a monthly clinic, where Immunosuppression is adjusted.

    The hospital’s 5-year survival rate is 86% about 50% for 10 years. I recently met a patient who had a heart-lung transplant 30 years and she is still in reasonable health.

  • colin-o-driscoll

    Member
    March 25, 2022 at 5:03 pm in reply to: Biopsy… yes or no?

    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 pleasant but all day patient procedures, so not really that invasive and I would think a lot safer than the alternatives.

    Colin

  • colin-o-driscoll

    Member
    June 22, 2023 at 9:15 am in reply to: Unknown facts about lung transplants

    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 my food because of interactions with one of the immunosuppressants. Another said don’t worry. The fear was based on one case where someone was taking 25 teaspoons of turmeric powder a day and ended up in an ER (!)

  • colin-o-driscoll

    Member
    December 13, 2022 at 9:56 am in reply to: Successful lungs transplant stories

    OK Thanks. That makes sense.

  • colin-o-driscoll

    Member
    December 11, 2022 at 10:51 am in reply to: Successful lungs transplant stories

    <p style=”text-align: left;”>Hello,</p>
    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 three times a week.

  • colin-o-driscoll

    Member
    March 25, 2022 at 4:50 pm in reply to: Eliminating Immunosuppressants for a Transplant Patient

    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 to immunosuppression. I had blood tests to look at liver and kidney function, prostate ultrasound, colonoscopy, gastroscopy for esophagus, stomach and small intestine, examination of the carotid arteries and the coronary arteries to look for sclerosis and of course the usual bronchoscopy exams. This was also done one test after another because my transplant was done as an emergency after an acute exacerbation.

    Tissue Typing

    Beyond blood tests, there was also tissue typing. I don’t know the details. The time to find a match depends on how common a blood type you have. I am O positive, which fortunately for me is quite common here.

    Body weight and fitness

    My BMI had to be below 30. The hospital helped with dieting. They also have a fitness program to get you as fit as possible before the operation, with follow up afterwards.

     

    I hope that helps, and good luck with whatever you decide to do.

    Colin

  • colin-o-driscoll

    Member
    March 25, 2022 at 2:55 pm in reply to: Eliminating Immunosuppressants for a Transplant Patient

    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.

  • colin-o-driscoll

    Member
    March 15, 2022 at 12:49 pm in reply to: Eliminating Immunosuppressants for a Transplant Patient

    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