Sunday, January 25, 2009

Woman needs lung transplant but finds decision to have it difficult

Like Debbie Mullins, I was in end-stage respiratory failure due to idiopathic pulmonary fibrosis (IPF) and doctors said I would be dead within two years without a lung transplant. I had absolutely no problem deciding to go through with it no matter what; I wanted to live. Yes, there were expenses involved and complications from the drugs, but here I am seven years later still going strong and looking forward to many more years of productive life. But I guess each of us has a different outlook and we have to respect other views.

By Cory Hurley, The Canadian Press
Times & Transcript

CORNER BROOK, Newfoundland - When staring death in the face, a lot can be revealed about oneself.

If that's the case, Debbie Mullins appears to be one extremely strong and inspiring person.

She lost her father, John Smith, to idiopathic pulmonary fibrosis 26 years ago and she watched her brother, Brian, draw his last breath just three years ago. It's been five years since her diagnosis and she said death is only a matter of when.

Pulmonary fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker and causes an irreversible loss of the tissue's ability to transfer oxygen into the bloodstream. Idiopathic refers to no known cause.

Unfortunately, there is also no effective treatment or a cure. Mullins said it is a complicated disease in which even the specialists don't often have all the answers.

When her father, a Corner Brook firefighter, died at age 54 it wasn't believed the disease was hereditary. It was only recently determined that it was. In fact, her co-operation with a genetic study was what led to her diagnosis.

"I know what's coming, so it is just as well to accept it," Mullins said in an interview. "What scares me the most is my family and, if anything was to happen to me right now, they are not ready for it. They think they are, but they're not."

The lifespan for someone symptomatically diagnosed with the disease is usually five to seven years. While Mullins was diagnosed five years ago, it's only been two years that she has been experiencing symptoms, which can include shortness of breath, chronic, dry hacking cough, and fatigue and weakness.

Perfumes and things like scented candles trigger her symptoms. Mullins had to quit her job in a local warehouse and she removed all carpet in her home to avoid as much dust as possible, but mainly she is living a normal life.

"Living life when you don't know what might happen is . . . " she said, not finishing the thought. "I can't live life like that. I refuse to get in a bubble, not move, and not do anything."

She and husband Gerry have one child, Jennifer Brake, and a two-year-old grandson, Brandon. Mullins has a large circle of family and friends who naturally worry, but are also her support network.

"The worst of this is your family," she said. "They look at you if you cough. They are all worried and they are all scared, which they have every right to be, I guess, but I don't look at it that way."

At 53, she said she is full of energy and enjoys the days she spends with her grandson, taking walks and going to bingo.

Mullins has a local doctor she sees regularly, speaks to a research team in St. John's, N.L., often, has video-conferences with doctors in Toronto every four to six months, and has sought out and spoken to others who have the disease or their family members.

She recently returned from Toronto, where a lung transplant assessment determined she was a good candidate. However, that is not necessarily all good news to Mullins.

"Everybody says, 'Good, you can get a transplant and it will give you another five or 10 years of life,'" she said. "But if you see the drugs that I would have to go on after. You need up to $3,000 a month for drugs, depending on which ones you would be on."

Insurance would cover only some of the drugs needed, while others require a special authorization and some are not eligible for coverage at all. But cost is only one of the concerns. She also worries about her quality of life.

"If you live long enough with your transplant, they tell me you are going to end up with a liver transplant or kidney transplant because the drugs will destroy that," she said.

"It is just not so simple as to go and get the transplant. However, this (disease) is scarring up the lungs. It is going to choke you; it is going to kill you."

For a year, Mullins took a number of drugs, which might or might not help halt the progression of the disease. She described the side-effects as "hell" and said she was only too happy when she stopped taking them. However, her disease did progress, showing the drugs were not effective, so she was still left disappointed.

Mullins feels she has a lot of time to make the decision of whether to get the transplant or not. Family members have encouraged her to do so, but she said they, understandably, just want her to live as long as possible.

There is also concern about the transplanted lungs being rejected. She said 80 per cent of transplant patients have lived longer than a year and 50 per cent for five years.

"That's the decision I am trying to make right now," she said. "It's not the transplant that scares me. It don't scare me at all. It's the drugs after. You are so not yourself and I hate not being myself. There are just too many side-effects. ..."

"I don't think I am negative. I know what the end result is going to be -- either you get a transplant and deal with the drugs or you are going to die. When I get to that point, I think I will say, 'Oh, my God, I better try it.' Nobody wants to die and I know that is where it is headed."

Meanwhile, as a wife, mother, grandmother, sister and daughter, Mullins is living life to the fullest.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

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In Great Britain, register at NHS Organ Donor Register

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Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves


Anonymous said...

Hi Debbie,

I read about you and just wanted to tell you that I know how you feel. I had a heart and liver transplant last year. I never told anyone, but I had no intention of having it done. Every night I would lie in bed thinking about it, trying to find a way to tell everyone I was not going to have it done. Then the call came. I told them I was not coming in and they asked to speak to my husband. After that my husband and son coaxed me into getting ready. I suddenly got calm and decided I better go. Mind you I was throwing up in the car all the way to the hospital from pure fright.

I just want to tell you I am approaching my first year anniversary (re-birth is what I call it) and I am so happy I went through with my transplants. Life is wonderful and it is great to be alive. I know it is scary and I feel that you are using the medication issue as an excuse because you are scared. Please don’t be scared. The medications will be covered by Trillium if you don’t have a drug plan. The Hospital can arrange all that. I was lucky. My insurance covers my medications. You can consult with the Social Services department at the hospital.

I assume that you were seen at Toronto General. They are a marvellous, fantastic, innovative hospital. They took wonderful care of me. I felt no pain. They are true to their word when they say they have great pain management. The doctors and nurses genuinely care about their patients. My nurses even sang to me in the ICU. They were so gentle and caring.

I hope you will reconsider because life after transplant is so great. You will be able to breathe and live again and have fun. Once I recovered, I was like a kid in a candy store re-discovering all the things I could do that I had been unable to do for many years. I can understand your frustration after being sick for so many years. It’s easy to give up. I fully understand because I went through all of those doubts, frustrations, and fears myself.

There are lots of support groups online. I just joined . There are pre-transplant patients and post-transplant patients on this site and they are a wonderful group who can lend you support. I will lend you support as well.

All the best to you.


Unknown said...

not all transplant so happy i was done in may 2006 and had 3 strokes 7days later then i was left paralyzed on life support.the doctors told my wife i probably wouldn't live i did and have since had 1 more when you read all these success stories remember that many have went before you and died or are still suffering.not everyones like merv who got a single lung and found his calling as a excellent spokesperson for lung tx awareness.i hope this doesn't offend anyone. but the glossed over facts bother my morals.sincerely Brad Males still kicking with one leg and best wishes to all pre and post. take care all and yes iam seeing someone LOL.