What am I talking about you may be wondering. Well I’m gonna tell you whether you were wondering or not *wink*
My first hurdle was when my oldest girl, Laurie,
who is a nurse and knows how important exercise is to keep the body
healthy, after hearing my diagnosis, asked the respirologist if there
were any pulmonary exercise programs available in our area. I looked at
her like she had just grown another head. I could hardly walk and
breathe, how the heck would I be able to exercise? But lo and behold,
there was just such a program at Freeport Hospital called the Pulmonary Rehab
Program. The actual course lasted 8 weeks and then graduates could go to
the rehab gym 3 times a week after that. So in January Eric and I trucked
off to Freeport every Monday to Friday for 8 weeks. We met the most
wonderful people who were also having a hard time breathing and we all learned
how to deal with shortness of breath and the various treatments
available. We also shared with each other what has and has not
helped. Much to my astonishment, I was able to do some exercises.
The staff started me off slowly and adjusted my oxygen as needed and before I
knew it I was using a number of the workout machines. As long as I have
these diseased lungs I’ll never be able to run a marathon or even walk fast,
but by pacing myself and using my walker to get around I have continued with
the exercises 2-3 times a week and I feel better off for it. Soon I will
have to start going to Toronto General to exercise there but for now I will
just keep on keeping on.
The next big hurdle for me was when I went for my
first apointment in Toronto. I was so naiive that I thought that my
doctor here would phone or fax the doctor there, tell them I needed a
transplant and one would be arranged immediately. Ok, maybe I knew it
wouldn’t be quite that simple but not so very far off. I’m not
kidding. I have since learned that the doctor I see there is a wonderful,
knowledgable and compassionate person but on that first visit I was stymied by
what he said. He was very straightforward to the point of being
blunt. He told me that this transplant, if it happens, is not a cure but
a treatment. He said when the transplant works and people are diligent
about their med regime after, they can have a number of good years (although 5
years is the median number they give). Some have lived 10 or 15 or more
years. BUT, when it goes badly, it can get very ugly. So we have to
be aware of the risks going into this because this is not a piece of cake
operation. The surgery lasts about 8 hours and is hard on the body.
The anti-rejection drugs and anti-inflammatory drugs I will have to be on for
the rest of my life are potent and absolutely necessary to stay alive.
They can eventually affect and even damage other organs. In other words, my
whole lifestyle will change. But if successful, I’ll be alive and I’ll be
able to breathe without needing extra oxygen and I’ll have my life back. Only I
can decide it the benefits outweigh the risks for me.
Then he dropped the biggest hurdle at my
feet. I was overweight. They simply will not operate on me at this
weight because history shows transplanted people who are overweight do not do
well after. So I was told me that I had to lose a minimum of 50 pounds to
be considered for a transplant. The more I lost after that, well it’s
icing on the cake because the surgery will be that much easier. Another
20 pounds for a total of 70 would be ideal but the minumum is 50. I
remember saying to my husband Eric on the way out of the hospital, “well
if he was trying to scare me, it worked.” I was confused and scared and I
cried a good deal of the way home. It was a cold, gray, rainy, yucky
February day and it fit my mood perfectly as we drove home.
Sometime in the next couple days though, I stopped with my little pity party
and I decided that not only did I need this operation but that I had a
right to this second chance at life that having this surgery would
give me. I understood what the consequences and complications were and I
decided I was willing to take my chances because really, when it comes right
down to it, without it I will die, so I have nothing to lose!
I decided that I was going to darn well fight for my right to have
it. I knew if I put my mind to it I could lose that 50 pounds. In
fact, like I said before, it felt good to have something I could take control
of and do it.
I’m happy to report that by the end of August I had
lost the weight, and they agreed to send me for the diagnostic tests to make
sure I was healthy enough to have the operation. I am still losing and I
have qualified for and been accepted to the lung transplant program. I
still have a hard time getting my head around that statement. They are
going to take out the lungs I was born with and put somebody else’s lungs into
my chest, right next to my heart. Mind boggling and miraculous and frightening
and totally wonderful and maybe even a little exotic because they use
such unconventional and cutting-edge technology that really is a
mystery to most of us. These are world-renowned surgeons who helped
pioneer and refine the lung transplant surgery to the point it is at today and
I think there is an aura of awe around them as well. Well at least for me
there is.
Anyway, I really am confident that I will not only
adjust to this new reality of mine, but come though this ordeal with flying
colours. I’m prepared to make the lifestyle changes I will have to make
so that I will see my grandchildren grow, I’ll be able to enjoy quality time
with my family, my friends and my hubby Eric and I will get to enjoy our
retirement together.
And as a very important aside, God bless all those
heroes out there who have agreed to donate their organs at the time of their
death. Without their generosity and compassion, none of this could happen
at all, for any of us who so desparately need them. If you are not
already an organ donor, please take a few minutes to sign up and you too can be
a hero! Just click the link below. It only takes a few minutes.
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