Transplant????

Posted , 2 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

My doctor and I have discussed lung transplants and I had some tests. Unfortunately, one of these showed I have osteoporosis, sad probably caused by taking Prednisolone (steroids) for COPD. I am to be started on some medication to try to address this and improve my bone density. Anyone any experience of this?? I would like to hear from you if you have. Thanks.

Jacee

0 likes, 8 replies

Report

8 Replies

  • Posted

    Hi Jacee, sorry I can't be of any help on these, but if you have any specific questions you could try the \"ask an expert\" section at www,netwellness.org or look through literally hundreds of past copd questions and answers to see if any are relevant. It is an American site but has tons of info on other health problems as well as copd. Vanessa
    Report
  • Posted

    Hi Vanessa, check out your private messages.

    jacee

    Report
  • Posted

    Hi Jacee, have just read in a pdf file entitled 'National protocol for assessment of cardiothoracic patients' that SEVERE osteoporosis is a contraindication when assessing patient suitability for lung transplant. I hope that this is encouraging for you as I think your doc is probably acting to prevent yours from becoming severe.

    In case you haven't come across this document yet, I found it by going to uktranplant.org and going to the drop down bar entitled Newsroom (at top of page), clicking on 'publications' . Then I chose 'policy and procedures' , then National protocol standards and guidelines, where highlighted in red is 'heart and lung-includes pre-transplant assessment and post transplant documentation'. click on that and you arrive at the relevant place (I hope!).

    I guess you may already have found this, but if not then I think it is worth you printing it out and having a good read of it. If you cant find it with my awful directions, I will see if my daughter can show me how to send it to you in private mail.

    I think it is a useful document for anyone considering transplant, and will be printing it out myself not only for possible future reference, but because the requirements such as dental health are obviously due to needing best possible pre op health, which to my mind makes them a good guideline as to what constitutes best health even for those of us not yet thinking of surgical options. Incidentally, did you ever consider LVRS as an alternative? Also I was surprised to learn that occasionally a 'living donors' tranplant is carried out. It involves taking the bottom third from one lung of each of two donors, eg. siblings or close relative or partner! Its been interesting learning all this stuff this week! I do hope this finds you as well and positive as is possible, and also that this info may be of some use to others too. luv Vanessa smile

    Report
  • Posted

    Hi Vanessa, I thank you very sincerely for being such a mine of information. I tried asking the expert but it did not address what I needed to know and they are not accepting more questions on this topic at present. I have also enquired about the lung reduction but apparently I have the \"wrong kind\" of emphysema for this to work for me. The damage needs to be localised and mine is not, it is throughout both lungs. The problem is that my calcium levels are already so poor that they would refuse me a transplant at present (I have severe osteoporosis) and so I need to address this and look to increase the bone calcium over the next few years. However, the doctor is talking of giving me a drug called Fosamax and research of this threw up some problems, some patients have had severe muscle/joint pain and had to stop taking it but the pain has not always reduced when it has been stopped. Also, there appears to be a question mark over whether or not it causes something called ONJ (osteonecrosis of the jaw) which means the jaw bone ossifies and dies. I believe that there were some law suits in relation to this in the US, the first in November 2009 was thrown out but the others appear not to have been heard yet - so it is worrying.

    Thanks again for trying to help.

    Report
  • Posted

    Jacee, so sorry to hear that your osteoporosis is too severe. It is a subject I know little about, so I can only say that if ever I happen upon anything that is believed to be of help, I will let you know. Also, can I suggest that you post on several sites, both UK and USA, but DO entitle your postings as Osteoporosis, so that it is more likely to attract the attention of those likely to have experience or knowledge of this.

    Hope you are not too discouraged by all this, I know you are usually a very positive person so DO stay in that fighting mood! And remember - exercise is good for bones too (though do go carefully).

    Best wishes to you and yours, Vanessa.

    Report
  • Posted

    Thanks Vanessa. It is a bit disheartening; but I have joined a site called the Second Wind Lung Transplant Association, which is American and is similar to this but specifically for people awaiting lung transplants. Many of them are old hands at this and have been very helpful and encouraging. I am trying to exercise more but had a bit of a setback on New Years eve when I ended up in hospital overnight. Nobody knows why but I was suddenly much shorter of breath. However, to look on the positive side, this has gotten a little better and I am starting back at work on Monday. Thanks again for your help and encouragement.

    Jacee

    xx

    Report
  • Posted

    Hi Jacee, just came across a lovely book on amazon called \" Taking Flight: Inspirational Stories of Lung Transplantation.\" by Joanne M. Schum. Although I heard about it through a Canadian site called transplantbuddies, It is made up of personal transplant stories from all around the world. It might make interesting reading if you are going to continue on the transplant path. I might get it myself, but think I am unlikely to ever have a tx. By the time my Fev1 deteriorates to say 15% or less I will probably have passed the 60 / 65 year age limit. Still, I will be happy enough to get to that stage!

    Vanessa

    Report
  • Posted

    Hiya Vanessa, good to hear from you. There are some good sites aren't there? I am told that osteoporosis would not be a bar to tx in the US and they are appalled that this could be used as an excuse for refusing a tx here. However, we are at the mercy of the NHS. Speaking of which, I am supposed to be going to hospital on Monday for exploratory surgery re my bowel. I received a letter today asking me to get a printed list of medication from my GP before Monday's appointment (GP is shut until Monday so how will I do this?), to have a blood test completed at any walk-in hospital blood thingy (none of which are open at weekends except for emergencies) and I am apparently to give myself an enema an hour and a half before my appointment (they sent this through the post and I would have to be a contortionist to manage, even if I was not averse to giving myself an enema whilst in Court, where I will be giving evidence an hour and a half before my appointment). NHS now appears to be DIY. Whatever, if I did not find it so funny I would sit and cry. Keep smiling.

    Jacee

    xxx

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up