I am a 50 year old male.
Just been told that I have Copd Emphysema, and that I should start thinking about having a single lung transplant.
I was wondering if any one else has been through the same.
I know it is a major operation, with a lot of for's and against.
I really don't know what to do.
I'm looking forward to any replies you get, and am wondering what situation you're in that you've been offered this? No-one has ever offered me a lung transplant or I'd jump at the offer!
I, too am wondering how you got this offer. I assume you are in UK - yes 1? I am in Australia and have no chance for transplant.
I'm in Australia too and when I see my dr next week I'll ask him what the chances are: I'll bet 100% if I had private health cover, but I don't ..... I'll update on here when I have that info.
I will try and give a bit more information of my copd.
I have had test which we thought showed mild copd,
then I had a CT scan which showed both my lungs were
in a very bad way.
So every thing changed from then, I was told to think about a single lung transplant now.
As the doctor didn't want to have to tell me at my next appointment that it's to late.
So really it is hard at the moment trying to think straight, as it has all happened so fast.
With regard to the lung transplant, I just don't know.
As I have said I am 50 yrs old, all my kids are adults.
So really if a young man needed a lung who has a very young family I think that he should have the lung, if you know what I mean.
I really don't know if my body would be able to take the opperation etc.
I hope this gives a better picture.
Thanks heaps for the explanation, that sounds like a very difficult situation you're in and not much time to decide.
All the best and please let us know how you get on.
Hi Stuart79383
I still am wondering what they saw that made them suggest transplant so fast and clearly they are showing you a sense of urgency. I do want to say this Stuart79383 .... 50 yrs old is not old. I get what you are thinking about someone younger needing it more than you but trust me they will do in order of urgency anyway...without you worrying about it. So stop that. Having said that then the next thing is yesssss.....have it done!! You can hurry and get a second opinion if u have insurance and can do that but that's not a surgery that they do everyday so surely it is needed. I'm like jude....I don't have private insurance so I'll probably never get offered that either. But you said your function test was ok but what did they see on the CT scan that merits a transplant? A large tumor? Must be a mass of something but they didn't tell you?? Anyway....you are extremely important to those that love you so just say yes for them my dear. You are still young. Let us know everything!!!!! Ladyjack51
Jude, did they see scarring (idiopathic pulmonary fibrosis), or some kind of damage on the cat scan? Also, try obtaining a list of charities you could call for gaining some possibly fundng for the transplant. Many times the pulmonologists offices have a list for them, or possibly find them online. IPF usually is very serious, because many pass away by their fifth year after diagnosis, and the victims can be any age to have it. They don't know what causes it. Also, I hope you are not a smoker, because I don't think anyone can have a lung transplant who smokes. It would be nice to have more information regarding what the Dr saw on your cat scan. I
I haven't had a cat scan, emphysema diagnosed by spyrometry. Are you saying any of us could have IPF and not know it without a CAT scan?
Sounds like something else to ask my doctor about on Monday..
I'm not a smoker since more than 5 years ago and I wouldn't blame them for not doing a transplant for a smoker: hospitals here won't do liver transplants for people still u drinking either, and neither should they.
I am only asking you, not everyone, in order to try to help you with your posting. You should have a lot of tests given before being told something as serious as having a one lung transplant. A one lung transplant is a very serious surgery. Plus the medications you have to take along with it for the rest of life. I only mentioned IPF, because this is one of the main treatments for this type lung condition, and I thought this is possibly what you probably have. This is why we want to know what lung condition you have been diagnosed with, since their are many that cause COPD, many that cause obstruction in our airways. A cat scan is better than an xray in order to find what condition it could be. The spirometry test is the tube you breath in when you take the PFT (pulmonary function test). This test only show the degree of obstruction you have in your airway, then based on the degree, their is a classification given (mild, moderate, severe, very severe).
Jud..see above posting....I am not saying you have IPF either, just assumed due to the doctor suggesting you have a one lung transplant. Also, I thought for your doctor to say this to you, that you obviously had a cat scan, since it takes a cat scan to find out if you have IPF. So, I don't know what you have, or what lung condition you have. You SHOULD visit your doctor and insist on more tests about your lung condition and insist he helps you figure out what condition you have. COPD has many different kinds of conditions...any condition that obstructs (chronic obstructive pulmonary disease).
My doctor hasn't suggested it! I was curious as to when and why it's offered to some people and not to others. Do you have me mixed up with someone else on here?
I am sorry Jude, I am getting you mixed up with Stuart..lol...I think I accidentally clicked on 'reply' tab under one of your above comments, and when you responded, I just kept responding, since I thought you were the poster...so sorry! I meant to address my response to Stuart.
But, Jude, to answer your question, I requested to have a cat scan after I took my PFT test, since I wanted to be sure, because I wanted to make sure it was what was diagnosed. That is just me.
But, if someone is going to get a lung transplant, I am pretty certain they will be getting a lot of tests, sooner or later, due to the seriousness of this kind of surgery. The tests are many such as, pulmonary (cat scan, Imaging studies, etc), blood and tissue type tests, cardiapulmonary tests (catheterization, echo, ekg, etc), and consultations with many doctor's or professionals that deal with transplants.
Not every doctor will have cat scans given, but if asked for one, like I did, then they may. Sorry I got your name mixed up with Stuart!
Referring to Stuart, I am wondering if his PFT is mild, but the doctor is offering a lung transplant after his cat scan, and I only wondered if it was IPF, since the only thing they can offer is lung transplant (meds don't help slow down progression). So just wondering.
Stuart, you are not old, and is considered middle aged. I would go for it, if I were you.!
Lolololol....I have to chuckle.....poor jude...I saw this coming yesterday when she first replied to you instead of stuart. I started to intervene but I figured I would just make it more confusing and let you straighten it out between you. Glad it's all good now right?
Yeah thanks,it did have me quite confused for a while
I will update you with as much information as I can. From my spirometry tests and pulmonary function tests I was initially diagnosed with moderate COPD pending further investigation. I had a CT scan a few days later and when I went for the results of the scan I was told that I had severe emphysema in both lungs and that I would need to consider a lung transplant. I was told that the lung transplant will not prolong my life but that it should hopefully give me a better quality of life. I have to undergo further tests to see if I am medically and psychologically fit enough to be accepted for a lung transplant, if so I would then be placed on the waiting list. From what I have been told the waiting list is between 12 & 24 months and I am not guaranteed that I will eventually get a lung, there is also no guarantee that I will live long enough to receive a lung. I have lost a lot of weight due to the Emphysema as the energy it takes me to breathe is the equivalent to running all day. Straight away this puts me at a disadvantage as I am now underweight and still losing more. Any advice from anybody in a similar situation or anybody who has been through the transplant process would be greatly appreciated. To clarify this has all been offered to me through our national health service. I would like to take this opportunity to thank people who have already posted replies regarding this.
Stuart, my doctor informed me that he would be glad to put me on a list for a lung transplant (not sure if single or double), but he did offer it to me. But, he said that the medications and work following it is tremendous. But, I think you should go for it, especially since your lungs are damaged from Emphysema. At least you will give yourself another chance, and at life too (which is prescious). Also, you are considered middle aged, in my opinion, not old! I wish you the best of luck, and you will be in my daily prayers too.
Stuart, forgot to add.....Also, the weight loss would be a good question to ask your doctor.
If a transplant won't prolong your life what good is it? I would think to improve the quality would also prolong it to have different undiseased lungs in you....even 1. Am I missing something? I'm not sure I would do it if it didn't also add to my years a bit.....
Hey, think it through Ladyjack: if the choice were 10 years of gasping for air at the end of your life or maybe half or more of that living a comparatively normal life, what would you go for?
None of the medication treatments for COPD prolong life either, but don't we all take them because they improve our quality of life?