For All The Cookies

"I haven't a clue as to how my story will end. But that's all right. When you set out on a journey and night covers the road, you don't conclude that the road has vanished... and how else could we discover the stars?"

Author: anonymous

The long awaited day has arrived.  After four months of  financial, physical, and mental preparations, loads of medical testing, and tons of paperwork all coming down to this.  This is a one hour interview via teleconference call with Dr. Micheal Hutcheon (Respirologist) with the Toronto General Hospital. I have one hour to prove to him that I am serious and would be an excellent candidate for a lung transplant.  Being 52 years old and having been diagnosed with very severe COPD with less than 5 years to live, It's for all the cookies my one chance to perhaps extend my quality of life and my  life expectancy.

My husband and I arrived at the Queen Elisabeth Hospital early not wanting to feel rushed. I needed to relax and not be short of breath during the interview.  The teleconference room turned out to be about 8' x 8' with a desk with a television on top, along one wall. Adjacent  from this was a small table with three chairs where my doctor, my husband and myself sat. The communications technician sat along the adjoining wall.  I pulled out my chair and when in doing this I jammed my husband's finger between the chairs. I looked up and there was Dr. Hutcheon on screen waiting for us. Definitely, not how I wanted this interview to start.

After the introductions, Dr. Hutcheon asked me lots of medical questions which I answered as best as I could. Those that I couldn't answer my specialist answered for me. We next discussed how my echo-cardiogram turned out to be so cloudy and unable to read.  My specialist suggested that another one be done if and when I reached Toronto. Also some tiny amount of bone loss showed up on my bone density test,  this I wasn't even aware of and certainly threw me for a loop.

Dr. Hutcheon then described how lung transplant surgery is performed, how it takes approximately 8 to 10 hours, some of the anti rejection  and the immunity drugs that I would be going on after the surgery and some for the rest of my life.  We also discussed the life expectancy percentages after transplantation for 1 year, 3 years and 5 years etc. All of  this I had already researched when deciding if this was what I wanted to do. So when he asked if I had any questions I truly didn't have any.  Except for the big one, of course, the one that I couldn't get out of my mind. Which was, "Are you going to accept me?" Which I couldn't ask because the decision was not only his to make.  He would take the results from this interview to a number of  people that make up the transplant team. It includes a Transplant Coordinator, Cardiologist, Anesthesiologist, Thoracic Surgeon, Psychiatrist, Nutritionist and a Social Worker. They, together would decide if I looked like a good candidate.

I felt I had to explain why I didn't have any questions.  I told him about all the research I had done.  I told him that I looked very carefully at all my options and this is what I wanted and needed. Wow, It has been a lot of years since I was this nervous. I did manage to ask for a time line on when I might hear back from them. He told me it would probably be in the new year. Going through my mind was how was I going to handle the stress of waiting another three months. He also stated that I might be to early for this, but we will see.  This is not something I was prepared to hear. I'm not certain if this is a good thing or not! This also ended the interview and it only lasted about 30 minutes.

My specialist made a comment as we were leaving the teleconference room that he figured I would have had come in with a page full questions. I sensed that he was disappointed with me. That was it for me, on the way home I immediately started beating myself up over not asking enough questions. Thinking of all the things I could have asked and didn't. My husband kept saying that I did fine, but I was sure I had royally screwed it up!

Exactly, two months to almost the day, I received a call from Kathy Whytehead,  Transplant Coordinator inviting me up for my week of testing January17 to January 21, 2011.  YES!  I'm moving on to the next step!!!!!

 

Who Would Have Thought?

While trying to prepare myself for the possibility of having a double lung transplant, I was told that one of the requirements for lung recipients at the Toronto General was to be physically fit with a very strong heart.  They would expect me to be on a strict exercise program,  I was aghast, how could I withstand the rigors of exercise when I couldn't walk from room to room in my home without being breathless?  I truly believed these people must be loco.  However,  I will give it a try and hope they know what they are doing.

The following week I had a meeting with the educator with the Prince County Asthma/COPD Education Center.I found this meeting to be very informative.  We discussed everything from how best to take medications, early signs to look for lung infections, actions I should take for lung infections. How to handle stressful situations, air pollutants, and  sudden weather changes.  She also registered me for Rehab exercise classes.

Pulmonary Rehabilitation Classes were held at the Prince County Hospital for one hour a day, three days a week, for six weeks. Classes consisted of warm up and stretching exercises, 10 minutes on the treadmill, 10 minutes on the exercise bike and 5 minutes on the elliptical to work my arms and upper body.  On the second week of classes we added in some weight resistance training. It was very comforting to be exercising with respiratory technicians taking your heart rate and oxygen level every 5 minutes.   However, classes ended for me after three weeks when I developed pneumonia.

 Some very important things I learned during rehab classes were don't pay any attention to the people next to you.  Don't let yourself get anxious or upset if that person is in better shape than you because even if we all are copd patients everyone is at different stages of the disease. Another very important lesson I learned was that any amount of exercise helps.  Just start out a little at a time and increase it when you feel comfortable.  It might even mean walking out to your driveway and back at first and each day increase it a few more steps.  Another lesson for me was my oxygen level could be perfect one minute and then drop drastically the next, so it's important for me to have an pulse oximeter which allows me to measure my own heart rate and oxygen levels while exercising at home. Once oxygen levels drop below 85 it starts putting more pressure on the heart until eventually it will begin to do damage. When I notice my levels dropping, I'll take a little break, get my breathing under control and then start exercising again.
.

 
Ideally some breathing and stretching exercise for starters then add some type of aerobics,such as walking or biking. Eventually, add in some resistance training with the weights and you will have the perfect balance. I lucked into a COPD exercise Instruction dvd given to me by my copd educator.  This dvd comes directly from the West Park Health Center in Toronto, which is known world wide for excellence in Respiratory Medicine particularly  in Respiratory Rehabilitation.  These particular exercises reinforce proper breathing techniques,  improve general flexibly and helps to clear lung secretions. The dvd is 30 minutes long and they recommend you do it  every morning.  Plus I add in my aerobics and weights 3 days a week. http://www.westpark.org/

 Who would have thought but eventually you will start to feel better. The more exercise you do the more energy you will have, the more energy you have the better you will feel and the longer it will take before coming short of breath.  I believe most copders lose muscle tone very quickly, and for this reason it is very important to keep exercising.  It really has been working for me!!!!

Is That A Light I see...?

Sometimes in our life we all have pain,  we all have sorrow,  but if we are wise we know there is always tomorrow

It has been, at the very least, a year and a half of waiting. but the day has arrived.  I finally have an appointment with a specialist. (an internist specializing in respiratory medicine). 

He walked into his office introduced himself, sat down and started to read my file.   He told me how, since I was diagnosed 11 years ago at the age of 41 with severe copd that it was most likely caused by heredity.  He then asked if I was aware of anyone in my family having copd.  I told him my father died from pneumonia ( a complication  of copd)  in 1983.  He said  that he wasn't saying that smoking didn't play a part in it because it did but that to be so severe at such a young age than heredity definitely factored in there. He would run a test for Alpha 1 antitrysin deficiency which is a condition in which the body does not make enough of a protein that protects the lungs and liver from damage. The condition can lead to emphysema and/ or liver disease. www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001178/

While listening to him speak the guilt was instantly lifting from my shoulders, the guilt that I was carrying around for the last 11 years.  Maybe,  just maybe I didn't bring this all on myself.  Oh!  I know I did,  but at least it's making me feel a little lighter. It also helps me understand a question I have had in the back of my mind for a long time. Such as why, with all my inhalers, antibiotics, steroids and awareness am I so much worse then my father was and at a much younger age?

I have never in my life had a physical exam such as this.  He pressed and knocked on every muscle and bone in my body, while asking questions about every area he was testing.  I was totally amazed.  Any questions I planned on asking him, he had them answered before I could ask.  He also told me that  I had less than five years to live and that my lung capacity was only at 23%.  For a normal person to understand this they would have to walk around doing their normal chores while breathing through a straw. Or they would have to run up and down a flight of stairs six times and try talking immediately.

Next we talked about how,  in today's world,  51 years of age is just a baby and that if I wanted to live beyond the next five years I would have to have a lung transplant. Since there are only five hospitals in Canada which do lung transplantation he would send my name to the Toronto General Hospital to be put on their list. We discussed that there was three areas that I had to prove and pass,  in order for Toronto General to even consider me for transplant.

First,  there would be a series of tests that he would have to run on me, proving that my heart was strong enough to withstand the transplant and that there was no sign of cancer.  The tests were blood work,  x-ray, bone density, 6 min walk test, blood gases test, ecg and an echo cardiogram. If I get by these tests. than I would have to show the next two requirements during an interview by a teleconference call, and if this goes well then I will be invited up for a week of interviews and more testing.

Secondly,  I needed to check with Prince County Hospital to see if they were running any kind of pulmonary rehabilitation so I could start an exercise program immediately, as the stronger I am,  the better chance I will have of withstanding the transplant.

Lastly,  they would be looking to see if I had a strong family/friend support team.  Transplantation would require me to move and live in Toronto for possibly two years and I would to have someone to be my support person who would be with me 24/7.  I would need to prove to the transplant team in Toronto that I can handle this mentality, physically and financially.  If I fail to prove any of these area than I wouldn't be accepted as a candidate for lung transplant.

Needless to say when it comes to having  a chance to live a normal life for however long that maybe or living  with a 23% lung capacity for the next 5 years, I choose transplant. I am aware that this is the most dangerous transplant they do and  I am willing to risk the possibilities of rejection and an earlier death from complications. It's a no-brainer for me,  I Need this and I Want this Transplant! I want the second chance of maybe making it through and living another 10-15 years with a brand new set of air bags. and the feeling of being able to take a deep breath and actually fill my lungs once again.