Wednesday, 27 February 2013

Background Story

It struck me, after talking to my cousin Ralph several weeks ago, how out of touch I have
become with old friends. We send jokes and articles to each other while becoming personally
more disconnected. It all came home to me when talking to Ralph exactly how acute it has
become, so, I would like to update you all. I am terrible with dates, time seems to pass by very quickly, but I believe that this last adventure started in 2009.
 I went to the doctor having become frequently quite short of breath. I was doing my job, but having to pause frequently to catch my breath. I was referred to a Respirologist who began a period of testing me for various things. I can’t recall exactly when he came up with the answer but it was finally diagnosed as idiopathic pulmonary fibrosis.
 Did idiopathic mean somehow that I was an idiot for having caught it?? Apparently, idiopathic means
that they don’t have a clue how people get it! Now I’ll bet that all my old friends will
immediately assume that my years of smoking finally caught up with me. Apparently though,
there is no evidence that smoking causes the disease, but that it might egg it on a little! This
disease, they believe, is caused by some foreign substance that one might be exposed to like fiber
glass, asbestos, mold ... or some other unknown irritant. So, “idiopathic” means that they don’t
have a clue!!
This disease has no cure, or real treatment, and is deadly. It certainly will not get better,
but my doctor had told me that some of his patients have lasted a number of years. However, one
of the British studies I had read said that 50% of those diagnosed, died within 3 years.
I was able to continue working, doing most of what I had to do throughout 2011, but I
was having to take longer pauses to catch my breath. I could load luggage into the back of a van,
but I had to pace myself carefully. I was becoming more and more aware that my passengers
were certainly noticing my heavy breathing, but my employer was allowing me to continue
working. Driving was a big part of my job, and I never had any problem with that part of the job;
that never stressed my breathing.
The date January 9th, 2012, I will not forget. I started loading luggage that morning, and
was having a lot of difficulty. I told my supervisor of my breathing problems, and she suggested I
get another driver to help me. He did, and I got the vehicle loaded, and the drive to Detroit was
fine. That day though, my pride kicked in, and I realized I could not expect others to aid me in
my job. It was my last day of work…
During the next few months I had several meetings with my Respirologist and was given
several pulmonary function tests. I was put on a drug called Prednisone which scared the heck
out of my lady. She had been married to a man on the drug and has experienced some of the
nasty side effects of the drug. Apparently, it promotes weight gain, and be quite a mood changer
in some people. Her way of putting that was not quite as polite. (Susan here: I call it the nasty b@s*!@rd pill)
I had developed quite a nasty cough and the Prednisone had helped it a fair amount but as I was
weened down in dosage, the cough would come back. I could not sleep other than on my left side;
anything else and I would cough badly. As the cough got worse, I would fight to find enough
time to catch my breath, and it would become quite scary.
Finally, in late June, Susan would ask me repeatedly to go to the doctor when it became almost
impossible to catch my breath. We called the family doctor, who was away on vacation. I went to
see one of the other doctor’s in the office who immediately suggested that I head for emergency
where she thought tests could be better carried out..
I have tremendous respect for our medical system in Canada, but waiting for 4 or 5 hours
in the waiting room is uncomfortable anyone. When I was finally seen, I was put on oxygen, some tests were conducted, and it was decided that I should be admitted. My oxygen levels at
that time would get no better than about 74. (We would not find out until mid-morning the next
day that there was a problem with the oxygen generator at my station ). The nurse in the morning
told me that they had a room for me on the cardiology ward but that she did not want to send me
up there with the bad readings I had, so the respirology techs were called in. It was amazing that
this one gentleman came in and immediately found the defective equipment. When it was
replaced, the oxygen was able to bring my levels up to normal while on O2 supplement.. Through the next several days, I was treated for a lung infection, and then informed that I would be on oxygen 24/7. Several
more days and I went home with prescriptions for 2 antibiotics, and a plan to again ween me to a
lower dose of Prednisone.
I guess at our ages, now a senior citizen, we don’t think of things that might be available
to us. I had gone to the Respirologist before and had asked many questions about the disease, and
had read quite a bit also. I was resigned to the fact that this disease was not treatable, and that
there were different speeds that the disease took in different people. I had been asked to be part
of a study for a new drug that was being tested to perhaps slow down the progress of the disease.
I immediately agreed, but testing proved that I did not meet the requirements; I had an elevated
white cell count, probably the result of me being on Prednisone.
Oh yes, back now to one of the questions I had never thought to ask. I figured what was the point,
I was a senior citizen! ||The question entered my mind suddenly though, and I blurted it out to
my Respirologist. What about a lung transplant????? I had not before thought of the possibility,
but was surprised when the doctor said that they were possible… Even for someone in their 60’s,
and 70’s; perhaps not so much for those in their 80’s etc…. I got the sense though that even that
might not be impossible.
posted by Carl

Hurry up and Wait

If patience is a virtue we must be saints. lol
We will fill in more background later just wanted to give you an up date. We have a tentative date for the week of testing in Toronto.... April 15-19, 2013.
Saw the local Respirologist on Friday last and he is going to call Toronto and see if we can fast track the evaluation testing.
One of the many tests Carl has taken requires that you walk up and down the hall between two cones  for six minutes. They measure the distance walked in the 6 minutes compared to his supplement oxygen level.
Emily's first birthday November 2012

Back in November 2012, Carl walked 267 meters on 3 L of O2. Last Friday he walked 302 meters in 6 minutes but he was at 8L of O2.
The Dr said he was going to call Toronto and see if they would consider admitting Carl for a week for the evaluation testing as he is concerned at the progression of Carl's disease. Today Carl spoke with his Dr and he said Toronto is receptive to that idea and we may hear from them in the next day or two. Keep your fingers crossed. The sooner we complete the evaluation the sooner we get approved and then on the transplant list.
Fleetwood Mac is in Toronto Apr 16th
We just heard Fleetwood Mac will be in Toronto in April 2013 ... sigh ... if only we could get tickets.
posted by Susan

Monday, 25 February 2013

Three steps at a Time

This is a daunting site to a person with advanced IPF. It wasn't that long ago (January 2010) Carl could take these stairs three steps at a time.
Positive attitude is vital when facing a lung transplant.
We have a Goal. We have a plan. Post transplant we are going back to this resort. When Carl is ready to tackle this flight of steps we will know he has won.
This will never happen without the Gift of Life from an organ donor.  Please  register as a donor today. There are approximately 1500 people waiting for a second chance at life. ... posted by Susan

What is Idiopathic Pulmonary Fibrosis?

We have learned there is no quick and easy answer to this question. "Idiopathic" means they have no idea what causes the disease. The first thing you think of is, how did I get this? Science is trying to find and answer and you will be asked about areas of employment and where you grew up. All this in an effort to pin point a common cause in sufferers. We can't lay the blame at the feet of smoking for this one but undoubtedly if you are/were a smoker, as Carl was, it had an effect.
Mexico, January 2009
Pulmonary fibrosis (PULL-mun-ary fi-BRO-sis) is a disease in which tissue deep in your lungs becomes thick and stiff, or scarred, over time. The formation of scar tissue is called fibrosis. This impedes the ability of the lung to absorb or process oxygen to the blood.
Carl was originally diagnosed in 2009. We had no idea what exactly that meant. Life expectancy is 3-5 years, there is no cure. Oxygen therapy is essential to function. A lung transplant is the only solution.
IPF (short form) cause a deep hacking cough. I was buying "Fisherman's Friend" cough lozenges, 10 packs at a time. His prescribed drug, Prednisone, was increased and finally after weeks of coughing, he has relief.  Carl was hospitalized in July 2012 with a lung infection and upon release from hospital was on O2, 24/7.
We were at an appointment with the Respirologist when Carl suddenly asked, "What about a lung transplant." We were pretty sure that the answer would be, "No, you are too old." The Dr said that that would be an option if we were willing to go through all the testing but he found most people did not live long enough to be approved. Not exactly the encouragement we were hoping to hear.
We decided to forge ahead!
posted by Susan

Sunday, 24 February 2013

Hello everyone!

Welcome to my blog. It has been very difficult finding answers to some of my questions about Idiopathic Pulmonary Fibrosis. Our purpose with this blog is to share this journey back to good health with those who are experiencing the same challenges and to further awareness of the need for organ donation.
In a nutshell we are waiting to complete the evaluation process for a lung transplant in Toronto. More on how we got to this point in later posts.
Please post comments, encouragement is always welcome and we will do our best to share our experiences. We are not doctors we can only pass on information as pertaines to my case, helpful blogs, internet links etc. Your healthcare provider is the person you need to talk to about your specific medical questions. So, stay tuned!