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Sick Lungs Don't Show

Lung Transplant



Lung Transplant Ctrs in Canada


Meet Melody (pre transplant ) The Waiting


Post Transplant Q's &A's of Melody


Follow a Couple of Tx Patients on Their Journey

This site & the information contained herein

2005 - 2015

You Asked Me......

(Past Q's of a Double Lung Transplant Recipient)

Q.  Transplant Cut Off Age

Hi Melody - glad to hear you are doing well.  I  am 57 years old and was diagnosed in January 08 - my FEV1 is 37%,  I am currently in pulmonary rehab and am doing quite well.  Seeing all the people there in various stages of COPD, I realize how bad it will get in time.  My question is - what is the age you are considered too old for  a lung transplant, and what can you do to prepare yourself ?



A.  Dear Linda..
I do believe that statute in Quebec is somewhere between 63 and 65...
As to what one does to prepare themselves?
Well, same info across the board to everyone.
Eat healthy, exercise everyday, avoid unnecessary stress, think positive and have faith in the people you choose to surround yourself with, be it medical or social.
That's my advice.
As to whether you will NEED a transplant, that is a serious question for your pulmonoligist.
Are you on oxygen?
Do you smoke?
btw...if you smoke, you must STOP immediately to get on the list for a transplant....I think you have to be a non smoker ; ) for 6 months before they accept you.
Talk it all over with your doctors.

Emphysema can worsen quickly or slower but it does not get better.

 It is up to you and your doctor to see over the course of time how you are doing.

When I was 49 my doctor told me I would not live to 60 without the transplant. At that point I was not on oxygen but my lung function was low.

By the time I had my transplant (wait time is approximately 18 months) my lung function

was about 17%. The year before it was 25% and the year before that it was 30 something....

Again though, every single BODY is different.
Discuss, talk and trust your doctors. That is pretty essential. The rest of us can help out with all kinds of support!
Take care and I am rooting for you!


Q. Current Number on the List

I'm wondering how you found out where you were on "the List"

while waiting.




A. Hi Gord,

In Quebec, all one has to do is call the Quebec Transplant Association,

give them your name, what organ list you are on, date of birth, and in

barely a minute or two, they simply tell you right then and there...

over the phone.

I used to call every week : ) And then less and less and then more and more...depending on my mood.
The association completely understands how excited we are to hear news and they do their very best to keep up our spirits.
Thank goodness for government institutions that actually work!
Best to you,


Q.  Single Vs Double Lung Transplant


Hi Melody,
Thank-you so much for the inspiring and humorous record of your

transplant journey. I am waiting (and hoping) to get on the transplant

list myself.  I am in a similar position to yours pre-op (female, 52. fev1

 18% - approx.), but also had a bout with bladder cancer in 2004

so must wait to be "cancer-free" for 5 years. Am wondering why

you had a double instead of single lung transplant and how you are

 finding the post-op drug regime?

Again, thanks for your frank and honest comments and stay well.

A.  Hi Barbara,
Typically in Canada we do double lung transplants because it seems to suit the patient better, all around. I can't give you specifics; I would leave that to a doctor.
The post op drug regime is alright. I must confess I do have my days. They say the first  year or so there are bumps along the road as you adjust. This seems to be true.
It is all worth it, to me...and I hope you get what you need when you need it!
Feel free to email anytime along the way.
Best to you,

Q.  Shingles

Melody, heard you're in the hospital with shingles. So sorry, my 
thoughts are with you for a speedy recovery. You're such a strong 
lady and you know G*d is watching over you. Hope you're already 
mending and looking forward to riding across green pastures.

A. Dear Shelley,
Thanks so much for writing.
Yes, Shingles are NOT fun.
Apparently I was a perfect target for this virus.
If you are 50 or older, have stress, low immune system or transplant recipient...
LOL....guess it was just a matter of time.
Here's the thing about Shingles. I thought when I first saw this "rash", it was from the heating pad on my back.
This is a common mistake and if you let it go for a couple of days, it gets worse, quickly. My rash developed into blisters.
The virus attacks the nerves under the skin and follows a path...I won't explain it any further because I don't know the biology of it all.
I can tell you, if it is caught in time, you take anti-viral pills and it gets better fast.
I did NOT catch it in time and had to take the anti-virals by intravenous in the hospital and be isolated.
Let me tell you something. I think the pain of the Shingles was worse than the pain of the transplant.
I kid you not.
So while I am a tough and brave lady (or so you think....), there was much pain medication/management involved.
If you meet someone who has had this, know that they have gone through a real tough time.
Thank G0D it has passed. And I am back to riding my horse and even bought a bicycle  the other day.
Take good care, stay fit, eat well and enjoy every little thing.


Note:  Melody has added additional info to last week's question of.... "Melody, you are a blessing and you never cease to amaze me and give me hope. My question is...did you first get listed when your FEV1 was 17% and was that 17% before or after your inhalers? If it was before taking your inhalers, what was your FEV1 after? "

A.   Hi Shelley,

Short sweet answer….after my inhaler, the needle barely moved anyway. It hopped up to a soaring 17.2




 Interesting,though, my oxygen saturation at rest was always in the upper 90’s.

So, I suppose, if I sat still ALL the time, I could have gotten by without the transplant for a while.

Not so much what I wanted to do. Though, I DID try to convince myself for a nano-minute, that it wouldn’t be so bad.

Then I realized I DID have an option.

You know, you play the cards that are dealt. And if I could not have had the transplant.

I WOULD have sat in a chair and made jewelry or wrote articles or do whatever I COULD…

Again, if you qualify, let me tell you, it’s not without its bumps in the road, but to walk down the street, sit on a horse, etc…is a good thing.

My sincerest wish is to help everyone here do the best and be the best with everything they have on hand.



QMelody, heard you're in the hospital with shingles. So sorry, my thoughts are with you for a speedy recovery. You're such a strong lady and you know G*d is watching over you. Hope you're already mending and looking forward to riding across green pastures.

A. Dear Shelley,

Thank you so much for your kind words and concern.

Boy, it really sucks..

I am out of the hospital, finished the anti-viral, meds and literally back in the saddle again.

Still, there is residual pain.

This, too, I have heard, shall pass.

In the meantime, I bought flowers for the flower boxes, working on a new painting and every time I feel the pain coming on, I move about, play with the flowers or paint…oh yeah, and TAKE PAIN MEDICATION.

I don’t believe in being a hero. Not when there is a way to get through it.

In general.

Though I do fancy natural medicines, i.e. acupuncture, etc.

Now, with transplants, herbal treatment and such are forbidden and THAT I agree with.

No room for error there.

But that’s just me.

Mel on the Mend in Montreal

Q.  Melody, you are a blessing and you never cease to amaze me and give me hope. My question is...did you first get listed when your FEV1 was 17% and was that 17% before or after your inhalers? If it was before taking your inhalers, what was your FEV1 after?

A.  I was listed at around's not so much the numbers....but really your functionality...
About the inhalers, I had been on them since childhood due to Asthma.
After the transplant...NO MORE Spiriva, Ventolin, etc.....because new healthy lungs don't come with Asthma!
So, that was a blast...throwing all those inhalers AWAYYYY!
Talk about freedom.
: )
Listen, if a couple of doctors or one really good one thinks you qualify and you can get on a list....I would seriously consider it....cause usually the trend is for the FEV1 is to go down..if it goes UP by a point or two....that's nothing great..
I mean, I was at 17% and now....108%....
As they say, " You do the math"....
And I am awfullllllllllll at math!
Best to you my dear,

P.S.   "..they listed me at 20 and by the time I got the tx I had gone down to 15,5...The drop was over 18 months,,,,that's why I am so adamant about getting listed asap!"

Q. Melody,  Thanks for being an unbiased opinion.  Most of the information out there is from people who profit from these surgeries and I just don't trust their opinions.  The other side is the people who do not want to be sued, so they want you to sign something that tells of about four good benefits of the surgery and three pages of things that can go wrong. My name is Larry from Oklahoma, US.  I'm 61, Youngest son is a  college Pharmacy student.  My stay at home wife is now going to nursing school. I have retirement from 21 years in army reserve, 25 years with 3M co. good social security benefits and will not live long enough to enjoy any of it.  Thanks to you I think I will try to get on the list. My lung capacity is 18% and it is the only thing wrong with me, unless you ask my wife.  If you have advice for me. Feel free to give it. I would love to go dirt biking or water skiing or just go for a long walk and not be afraid I won't make it back home

A.  Dear Larry, (wasn't there a TV Show like that?)

I think it's fantastic that you are at this particular age and seem to have no underlying problems..(yeah, and you can speak to my husband, too, on that one!)

I completely get how you feel about biking or water-skiing...It's an amazing thing to be able to do what you have missed doing for so long. (Riding, swimming, many firsts that it's a joy!)

Granted, while I was waiting and my world seemed to shrink, I did take up other hobbies. However, if you qualify for a transplant and you trust the team of doctors, my take on it is to go for it.

However, you have to know, as I am sure you do, there are no guarantees in life. And you will be given statistics before you agree to sign up, after you have passed all the testing.

Personally, I looked and listened to the statistics (they seem to change all the time) and I just wasn't going to spend my days in this particular condition when there was a viable option to improve the quality of my life.

If you have medical insurance and all that it takes in the U.S. to cover the procedure and follow-up, that's just great. In Canada, we have socialized medicine so it's not a big problem.

Larry, I wish you great success. You sound positive and willing and believe it or not, attitude is so very important. I am sure that it got me through some bumps in the road, and continue to get me through a few more.

Whatever you decide to do, you should only be happy and live your life your best ability.

Please keep in touch and let me know how you are doing and where you are on this journey. I am happy to listen to how you feel. We all need someone to share our thoughts with...and perhaps, because I have gone through this procedure, and still recovering, I am not shy at all to hear and talk about whatever is on your mind.

Fondest Wishes,


Q. You; dear lady, are a remarkable woman.  I have a question and maybe I shouldn't ask but here goes.

Did the Dr's give you any indication of how long (on average) survival is for transplant lungs?

A. Ha. Statistics. I use the word “sadistics”….hmmm…well, the survival rate ranges from 5 to 20 years as far as I know…One woman here in Quebec has survived 20 years. Imagine that.

So, personally, I don’t think about it much. I am happy. I can breathe. And I have a gut feeling, with the proper care, nutrition, faith, positive attitude, that I will be around long after everyone gets sick of me!

Life has no guarantees. But you know what? After my doctor removed my diseased lungs, he told me, I had 6 months left with them. Now, that’s scary.

I once asked a man in a waiting room if he was “scared” for the operation.

He said he was scared he wouldn’t get it in time!

This is always a personal choice. Talk to your doctors. There are no guarantees.

Personally, I found that breathing was almost an impossible habit to break.

How many years? I couldn’t say…but I have a good feeling about this. And I certainly have a good feeling walking and swimming and riding horses….

So goes my experienced so far….I hope you can use some of this information to help you think about what is right for you.

Best, Melody

Q. I have been offered a lung transplant in uk, but I am frightened, simply because it seems such a trial and error op as opposed to a kidney or heart transplant. Plus the fact I am slightly overweight. Where did you get your strength from ? xx

A. Well, it can be a frightening prospect but one must contemplate the alternative and also take into consideration the quality of life you are leading at this point. Lung transplantation had really improved over the years and for my part, I had and continue to have great faith in my surgeon, the pulmunologist and the transplant team.

Being a bit over-weight can be corrected. Even on oxygen, I could walk on the treadmill, eat smaller portions, eat better foods. Anything and everything is possible.

For me it boiled down to whether I would want to continue living with a very low lung function that could deteriorate over the years (in my case, months) or go for the transplant.

I went through a batter of tests. I got on the list. And my life was saved.

As a matter of fact I went horseback riding last week and by June 1st I am receiving a new horse, all mine, for my 51st birthday.

Where do I get the strength? Faith, G0D, family, friends and an overwhelming desire to live my life “out loud” .

I hope this helps. And really, of course there are risks, but this procedure has really improved over the years. 

Best to you and write again if you need someone who wants to listen. I’m all about that.


Q Hi Melody, you look fantastic!!  I am currently waiting for transplant and have been on the list for about 18 months. I have a few questions if you don't mind.

How are you feeling ?

Do you remember being on the vent? This is what scares me the most.

Were you in a lot of pain ?

Did you know as soon as you woke up that you could breathe?

If this is too much to answer at one time its OK, thanks for making yourself available for this board. Jackie works so hard for COPD! We are lucky to have her fighting for the cause.


A.  Hello and good for you being such a “patient” patient..: ) I was on the list for 18 months, as well.

Here’s the good news and only good news, really.

I feel wonderful. I am getting used to some minor adjustments in my diet because of medications but that really is nothing considering my lung function is great and life is greater.

VENT? Ha….I hardly remember it. Trust me. PAIN? Not  too bad at all. At Notre Dame Hospital in Montreal, Quebec, where I had my transplant, they have excellent pain management. I had an epidural drip for the top half of my body, post surgery for about a week. Following that, pain medication.

Honestly, I gave birth twice. THAT’S PAIN.

And as soon as I was conscious, YES, I KNEW I could breathe. It was a miracle that I embrace all the time.

 I have no “down-side” answers for you. All went well. All still goes well.

I think having a positive attitude helps…along with a great surgeon and a great team taking care of you. Add a dash of faith, love and support and, well, there ya go…

 Hang in there and don’t be afraid. Honest. You will walk and talk and breathe on your own.

Next week, 6 months post tx, I plan on swimming.

Hope you get your call soon and just smile all the way to the hospital.


Q  How did you get past being afraid of a transplant and what kind of antirejection meds you take for how long?  That's a 3 in one question.  thanks  Ladyfaire

A.  Hi there,

 Honestly I was afraid of the transplant for about two minutes when I had to make the decision as to whether I would “ go for it “.

Once I decided, the fear went away. I had a lot of faith in the medical staff and just a whole lot of faith in life. I don’t believe in permanent failures. I believe in persevering and I think miracles happen all the time. Just like rainbows.

As for the anti-rejection meds….I think every case is unique. In my case, I am still adjusting to what goes well, food-wise, with them. For example, I can’t eat garlic with shrimp.  Or scotch on the rocks. : ) But the meds are not bad. They do the job they have to do. And that is what matters.

Remember the focus. Life. Quality of life…a little adjustments for you tummy and muscles (you can build yourself up again, too) soooooooooo beats the alternative.

It’s all worth it. So, there you have it. I will take the meds for the rest of my life or until science finds an alternative. I also get to breathe the rest of my life, too.

Be well and of positive spirit,


Q.  Because of your recent double lung transplant Mel, you were required to stop smoking for 6 months prior to the surgery.  I have recently given up smoking, but eating has become a real problem for me, everything makes me sick, bloated and uncomfortable.  Does this ever go away?  Am way beyond the x-plant age, but maybe I could hang around for an extra year or two if there was any hope of feeling better.

A.  Oh yes, the quitting smoke thing…and how I LOVED to smoke. That’s a good question because I am not wagging fingers and preaching about smokers. I was one. I quit 5 years ago. With great difficulty. Really. I used the patch. Had I put it over my mouth, it may have worked sooner.

As it was, it took a number of months on the patch and a lot of new types of behaviour. Like getting up on the other side of the bed. Using different soap. ANYTHING that changed my routine. These were MUST DO’s for me.

 I never felt bloated. I ate differently. I stopped talking on the phone a lot…I didn’t hang out with people who smoked.

 I can tell you that YES it all goes away. But you have to do your part to make it go away. Eat lighter foods. Drink water. Don’t get stressed. Try anyway and I highly recommend a website:

 Every month I get a report on how much money I have saved; along with that info, they tell me how many cigarettes I HAVEN’T smoked. Last time I checked, I saved over 20K…oh, and I have not smoked over 42,000 cigarettes in 5 years.  NO JOKE. How’s that for statistics.

Do it. Quit. Stay Quit.

 By the way, YOU will BREATHE better, COPD or NOT.

 Best to you and hang in there…YOU can do it.


Q.  Hi Melody,
You are truly an inspiration. I was diagnosed with COPD five or so years back but with each passing year it is getting worse. Fortunately, I am not on oxygen but I do use inhalers etc. My biggest problem is under minimal exertion I get SOB. What exercises and diet do you recommend and why.
Thank You.  George

A.  First of all, I strongly recommend you speak with your pulmonoligist who can direct you to a trained physio-therapist who deals with people with COPD; and a dietician who also deals with these issues.

 I followed their leads.

 All I can safely say, in as much what worked for me; was strength training and walking.

As for diet, I found the lighter you eat, the better you feel.  Don’t forget, with COPD or Emphysema, the lungs start to elongate and push the diaphragm; creating a smaller space in your tummy…So no huge steaks…

 Diet and Exercise. Everything in moderation, including moderation. : )

 Again, check with your doctors as you may have other issues that I did not.

Be careful. And be happy.


Q.  Do you know of any alternative treatment for copd, I nebulize, and am on inhalers?

A.  Other treatments? Hmmm…exercise, diet. I did YOGA…that worked for me because it kept me in shape and relaxed me. Relaxation is a very good way to “treat” any disease.

I cannot recommend other medications. That’s up to the doctors.

Again, I recommend, exercise, healthy food, positive attitude. The more you strengthen your body, the easier it is for the oxygen to nourish it. When your body is weak, your lungs have to work harder….actually the hemoglobin in your blood that carries the oxygen, has to be absorbed into your muscles etc…and if your muscles are weak, everything has to work harder.

(So I have heard…)

Bottom line…Sleep well, eat well, stay strong…and you can live and you can be happy.  Medicines are remarkable  and you can add to your arsenal of treatments with stuff YOU can do on your own.


Q.  My Mom has been trying to qualify for a lung transplant.  She has been turned down by OSU, CLeveland Clinic, and Univ. of Pittsburgh.   She has end stage emphysema and is 65.  She is on a ventilator at night.  So you know of a transplant clinic that is easier to get on a list?

A.  I cannot respond to what goes on in the USA. In Canada, you are tested for eligibility and you are put on a waiting list.

If I were you, I would make enquiries to different hospitals, directly.  I am guessing that the fact that she requires a ventilator at night may be a bit problematic for qualification. Nonetheless, I would not give up.

Call other hospitals. Try some in Canada? There is Notre Dame Hospital in Montreal, Quebec and a hospital in Toronto that does the surgery. Sorry, I don’t have the name of it on hand…Google it?

I wish you the best. And I pray your mother gets on a list. Be actively involved in a big way to make it happen. You have to give it your best shot.

I am sure you will. You sound like a marvelous daughter.


Editor's Note:  There's a list of Canadian  Transplant  Centres with contact info here on the website. You can also check with the Canadian Institute of Health Information.

You said you are 50years old. Prior to your transplant, I remember seeing some of your posted pictures in many different occasions. You did look somewhat 50 before because the illness kept you that way. But now, I would not give you even 35 y.o.
You look and I believe that you feel 20 YEARS YOUNGER !!!!!!


A.  Oh my, you are way too kind.

Bottom line. More oxygen to the body. More joy in life. Less stress. Learning how live properly or making better choices; being grateful for everything; yes, I must look younger because I feel re-born.

I will be 51 in June. OH NO!

Here comes menopause

It’s all good and thanks again.


Q.  Hi Melody...first, I'm so happy for you and I pray you have a very long and wonderful life. I think there must have been something in the air or water in Montreal. We are both from Montreal, I am 53, you are 50, I was diagnosed at 37 and you at 40. I also had another friend from Montreal, same age that was transplanted some years ago but I've lost track of him. I'm in Brampton, Ontario now and I'm wondering at what point did you make the decision to transplant. Currently, my FEV1 is 33% but my diffusion rate is low at 41% and I'm using oxygen for sleep and ambulation. I can still hold my sats between 92-94% when sitting. It's such a hard decision and I'm really trying to figure out when I should be looking at this option. To date, my respirologist doesn't want to discuss it and I'm concerned. Possibly, I'm missing the boat or lungs in my case.

A. I made the decision to transplant after they told me I qualified for a transplant. If you qualify, it’s their subtle way of saying YOU NEED THIS. However, if you ask the doctors if THEY would do the same in your shoes; they will not answer you. They are not allowed.

Look, I had a choice. Live a few more years, maybe…on oxygen; doing less and less because this is a degenerative disease; or take a very calculated and educated risk/chance and go for it. I had heard a lot of success stories. And personally, I felt  I had to do it.  My doctor, G-d bless him, has a great reputation and the transplant centre at Notre Dame Hospital in Montreal gets very high marks all around the world. So, there you go.

Funny, one night, midway being on the list…I was sitting on my bed, with my oxygen, playing guitar…and I called my daughter. “Amanda, this isn’t so bad. I can breathe with oxygen and play guitar; I am not in pain…why should I go through a transplant?”   She answered (She was 20 at the time)…” because wouldn’t it be more fun on a beach with ME playing guitar and then going for a swim?”

There’s my answer.

Next week I am getting back on a horse. And this week, I am going swimming.

When your lung function is bad enough or your quality of life prevents from really, truly doing things you want to do; and if YOU ARE LUCKY enough to get on a list…honey, the heavens are talking to you.

That’s my take. Take what you will from it.

There are no guarantees. But I sure prefer my life now than I did six months ago.

G-d bless.


Q.  I have been told by my pulmonary doctor that I am to old for a transplant.  I am 68.  I have emphysema, copd and asbestosis.
Is that true?  I would like to live for another 100 years.


A. Well, my first reaction is always get a second opinion.

My second reaction is to get a third opinion.

My third reaction is to tell you to eat well, exercise and think positive. Stay away from all kinds of negativity. Ick…

I know there are cut-off ages….but you never know if maybe someone, somewhere, will cut you some slack.

With that said, I too would like to live another 100 years, too. In fact I do believe I will never die : ) Too much shopping and painting and stuff to do…

In case I’m wrong, let’s make every breath count….push the envelope…inquire everywhere, as to what your best options are.

Never give up. Ever.

And smile.

We’re all on Candid Camera.

 Keep in touch and let me know how you are doing.

 Love, Melody

Q.  Where did you have your transplant done?

A.  I was lucky to be treated at Hospital Notre Dame de Montreal, here in Montreal, Quebec, Canada.

The entire staff, pre, during and post transplant are all amazing.

Best to you,


Q. My brother is 45 and just diagnosed.  He has diabetes too, so he is devastated. 
Do you have some advise?

A.  Hi,

I am sorry to hear that he is devastated. At what stage of COPD is he at…what does he have, exactly?  There are so many excellent treatments for COPD available and medicine makes advances all the time.

He needs to find out about all the resources available at his disposal, be it medical, emotional support, nutrition, exercise, faith if that suits him.

I understand all to well that immediate sense of devastation. However, it has been my experience that so many of us have faced medical challenges and we have come through on the other side; and if not that, we learn to improve our lives the best we can.

You know, when I could no longer ride horses or sing in a club or even walk stairs without oxygen; when it got “ real bad “….well, I learned to make jewelry. I read more. I compensated. And I learned a lot about a lot of new things that I never thought would be interesting.

I also found friends and the meaning of friendship. I had my little pity parties. That’s fine. Please tell your brother he is allowed to feel how he feels. Though, please stress to him that the beauty of the human spirit is its resiliency. And he is not alone. Hey, he may find out some really cool things about himself after he gets through this feeling of “devastation”. There are more good times to come. As we say in my faith, “Choose Life”.

And a single malt scotch doesn’t hurt either once in awhile. ;-)

Give him a hug from me and tell him I am living proof, along with so many others, that this is not the end of the road. Maybe it’s just a new beginning. 









Last updated Januuary 9th, 2010











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