Woman Getting 2nd Lung Transplant

[Blossom/Jackie W.]

Note: I opted against putting this in the COPD section. Although this is lung transplant info, the reasons weren't COPD as far as I know) I thought you might fins this article interesting.

I read this in the morning’s paper about a lady here in Nova Scotia. Additionally it brought up a matter that Bear and I have been working on….(trying to find out from the Ministries of Health for each province).who pays for the after care and meds (by province) when a transplant is done. Anti rejection meds are on going and can be pricey…

Woman Set for Lung Transplant – Again

An Annapolis Valley woman is heading to Toronto next week for her 2nd double lung transplant in 9 years.

Sandra Winter of Kemp Shore, leaves next Friday for Ontario where she will meet her surgeon the following Monday and receive a pager so she can be summoned the moment a suitable donor is found.

That doesn’t mean it will happen any time soon, though. Ms Winter says she knows of people who get their transplant in 11 days and others who have to wait 8 months. She will live in an unfurnished apartment until then and spend another 3 months after her surgery recovering before she returns to Nova Scotia.

That means plenty of expenses for accommodation and drugs and friends have rallied around her with fundraising campaigns including benefit concerts, art sales and yard sales.

She has $23,000 so far, enough to get her started. The province of Nova Scotia will cover the surgery, but not the drugs. She estimates she’ll need $60,000

Ms Winter received her first transplant in 1998, when she was 45, after being diagnosed with a condition in which the lining of her lungs thickened and made it difficult to breathe. After the successful surgery, she moved back to Nova Scotia where the new lungs served her well until this past November, when Doctors wanted to see her after her annual assessment.

She was diagnosed with a similar condition in which blisters form on the inside of the lungs, making it harder to breathe.

The condition is not uncommon in transplant patients she said.

While second transplants are rare she said, Doctors told her that her kidneys and heart were in good enough shape to allow for a second procedure. Since normally bodily processes are shut down during the operation, those organs need to be strong enough to be restarted after surgery.

“I feel very optimistic about it” she said.

There are about 40 lung transplants at Toronto General Hospital each year, and only 2 or 3 are repeat recipients, Ms Winter said. ‘They’re much younger than me........."

(Note: for anyone who has been following Melody Pearson's lung transplant wait/info, as of yesterday June 7th; she's now 7th on the list. (you can read more about her at www.copdcanada.ca there's links near the bottom on the right hand side) Melody is a different lady than the one in this article.

[John]

Interesting !Sure does raise some questions! I'm not sure how I'd feel about getting a lung transplant never mind two ! Thanks Jackie

[the bear]

Hi Jackie; If you can find out the doctor, is it Dr. Waddell perhaps I can find out more about costs from the TGH and you can fing out more from Nova Scotia about the rejection drug costs there. bear.

[cocojax]

Bear Dr. Waddell is the surgeon who will be doing my surgery, I am hoping if I get on the list that all my drugs are covered from my drug plan, I guess I better do some investigating myself...

[muffin]

Read that in our paper about a week ago. I found it interesting, I really didn't know they would do a second transplant. I'm thankful she will get another chance at 9+ more years hopefully!!

[Blossom/Jackie W.]

Ellen; if you're on a drug plan chances are your meds would be covered. However; I'd still check into it.

Bear; I'm gonna try and get ahold of the reporter first of the wee and see if he can put me in touvh with the lady (with her permission). If it happens, I'll ask. From the cost of the meds it sounds to me that it might be in keeping with the info we've been seeking. Looks like it's not covered. But; I'll double check.

[Blossom/Jackie W.]

I'm really happy for her too Arlene. Though they don't say "what" the problem is with her lungs, it sounds to me IPF (Idiopathic Pulmonary Fibrosis)

[cheryl]

Jackie,

When you say Melody is 7th on the list -- Is that because her situation is not a dire emergency? I'm just curious because Ken's condition came to light just this past October. I'm wondering how the pecking order is determined.

[Blossom/Jackie W.]

Cheryl; her situation isn't good though she's in good shape compared to what I gather Ken's was. So probably a combination of that (she might have a bit more time so to speak) but also it's her blood type. That's basically the list From what I understand) she was on......for Her blood type)

[LindaNY]

spencer said:

Interesting !Sure does raise some questions! I'm not sure how I'd feel about getting a lung transplant never mind two ! Thanks Jackie

I'm with you. I don't think I would bother at my age.

From what my Pulmonologist said most patients generally don't do too well anyway, especially older ones.

[cheryl]

"From what my Pulmonologist said most patients generally don't do too well anyway, especially older ones. "

That saddens me. I hope some have a better quality of life afterwards.

[cocojax]

How old is old, and sometimes what choice do you have? I won't post what I am thinking in my mind cause I am trying to think positive...

[morningstar]

Friends,

To me at 51 almost 52 I know it would not be a option for me. It is my belief that it has to be a certain type of personality to do this. Because it not only works on the body but the mind plays a very big part in it. My mind would not ever accept it as such. So I surely wish any well that does this but for me it is not something I would consider.

[Blossom/Jackie W.]

I think there's a bit of validity to what Rose is saying....at least from the mental perspective. Your mind has to accept it and it sounds like her's has. As for age. Her first one was done at 45....it lasted 9 years (again though I suspect the culprit is a genetic one that may have casued them to fail otherwise they'd still be going). Regardless; that puts her now at 54. To me; and by today's standards, that's still pretty young.

Given the opportunity.....I'd do it again.

[cocojax]

Thanks Jackie, I'm positive it has a lot to do with the mind, I am 55 and according to Dr. Waddell that is still young for this surgery, I do have my doubts at times and sometimes I am so scared that I break down and ball my eyes out like a baby. But what are you going to do. I may not even pass the requirements to be put on the transplant list. I hope I do, but I am also hoping in between now and then that something could change with stem cell research or some other kind of less invasive procedure...

[Blossom/Jackie W.]

Ellen; If attitude has any bearing on all of this YOU are at the TOP of the list!

There's a lot of factors involved with the transplant issue; from what I gather it starts with a recommendation from your Pulmo Dr. Sounds to me like you crossed the FIRST biggest hurdle; getting referred! You just make darn sure you're in the the best "physical shape" you can be in for your sitiuation. AND you are still young (though you may not feel like it)

Who knows...maybe your lungs are not in bad enough shape yet? (just josting with you )

You're not alone on this Ellen. Look at Cheryl's uncle right now; seems to me he was in a lot worse shape.

Keep us informed as you go through the process.......we'll be here.....

[LindaNY]

I certainly didn't mean to dampen anyone's entheusium, but that is just what my one doctor said and I personally at my age, 64, would not even consider it.

There is always hope for younger people. Hang in there.

[cheryl]

Something I'd like clarified.

I was discussing lung transplants with a friend and she mentioned that she thinks some people just would not be able to accept the fact that another person's organs were in their body. Is this what you are meaning when you say "the mind has to accept it"

[LindaNY]

I was discussing lung transplants with a friend and she mentioned that she thinks some people just would not be able to accept the fact that another person's organs were in their body. Is this what you are meaning when you say "the mind has to accept it

For me that would not be an issue at all.
I'm not a bit squeamish. Not after working all of those years in the OR and on the ambulance squad.
Perhaps the others can voice their opinions.

[cocojax]

For me Cheryl I meant that I personally would have to think positive, that the outcome of the operation would be a good one, that the risks, and success of the operation would outweigh my quality of living now.I am not on oxygen just always SOB, they told me my FEV1 was 33% 3 hours after taking my spiriva and advair and about 2 1/2 hours after ventolin. You know when I went to Toronto I did not even think about lung transplant, I thought I was going for something way less invasive. That is where my mind is now, if that makes any sense. As far as having someone else's lungs in me, I thought about that for a fleeting moment and then I knew I would be so honored that someone would be so generous to give some stranger the chance at a new life. There is no better gift really...Save a Life sign you donor card...

[cheryl]

I don't think it would bother me either. I'd be grateful that I'd been given a second chance. Your health at the time would obviously be a big factor too.

[morningstar]

Cheryl,

In a way that is what I meant. Someone else's lungs in my body. But , more I meant that I am such a worried and I panic so easy that I don't think my mind would handle it. I have a cousin that had a heart transplant almost two years ago. He is just 61 now. He is doing great. Goes out and talks to group of people about it. But at first he had a hard time with the fact they had taken a heart from someone else and got rid of his and replaced it. Now I know there is much more attached to the heart with people thinking they love with the heart and all the mussy stuff. But I know me and I would have trouble every breath I would take thinking they were someone Else's. Some kind soul gave them to save me And the hurt I know they would fill would probably cause me to reject them. I don't know about the lungs but after 3 years if Danny (cousin) wishes and the family agrees they are allowed to meet. He wants to do this. I could never do it.
Tom is a Donor has been since he went in the service in 76 I am proud of him for it yet I hope I am not to selfish if that part of our life falls to me.