Sharon’s Extreme Medical Adventure, Part Two

The following is part two of Sharon's account of her Extreme Medical Adventure (Double Lung Transplant).  If you missed part one, you can get caught up here.

This is the second in a series of articles I am submitting to Alpha-1 Canada Community News concerning my experience with end stage lung disease and organ transplantation.

Over the last few years, late 2005 and onward, the extent of damage to my lungs had progressed to the point that not only was it causing me great difficulty to perform even minor household tasks it was beginning to impact on matters of “self-care”.  It was most definitely slowing me down to such a degree that there was no way I could continue to “fake it” in the real world and so applied for the Canada Pension Plan (CPP) Disability Benefit in order to allow me the opportunity to “be sick” when necessary and take better care of myself more generally yet still contribute toward our household expenses.

The application to CPP is not a difficult process but does involve completing an application oneself and from your physician – I recommend using your Pulmonologist/Respirologist.  For the personal application it was simply a matter of being very frank and stark when describing the prognosis for A1AD and that the only treatment that might lead to the ability to return to work is an organ transplant.

I had long since applied for, and received, enrolment in Ontario’s Trillium Drug Program to help defray the cost of prescription medications.  This financial assistance had allowed me to participate in the workforce for a longer period of time rather than I would have otherwise and thereby allowed me to continue to make contributions to CPP and kept my family away from the social assistance cycle.  Similar programs are unfortunately not available in every province which is one reason why a few of our federal political parties were talking about introducing some form of national “pharmacare program” during the recent election campaign.

Along with the financial challenges inherent to any chronic, life threatening disease there are many and complex emotional issues that one confronts.  The combined stress can easily become overwhelming so it is important to establish/maintain at least a few good "caregiver" relationships to help sustain you along the journey.  For me, the Alpha-1 Antitrypsin Deficiency International Support Mailing List was an invaluable source of information, ideas and support when I was diagnosed in the mid 1990's and the connection to fellow Alphas provided a welcome sense of "community" I had not anticipated .  To subscribe send an e-mail to ALPHA-1-REQUEST@home.ease.lsoft.com and one of the List Owners will then follow-up with you.  Of course now we have Alpha One Canada which is able to facilitate a variety of support services that are more specific to the needs and concerns of Alphas in Canada – the regular toll free call-in support group meetings and Yahoo Chat Group are the most recent developments here.  For information about these go to the Alpha One Canada website www.alpha1canada.ca.

I have also been blessed with many good friends and co-workers over the years; however, not many of them were privy to the extent of my condition.  Many contributed to my well-being simply because I was able to keep involved in the world of paid and/or volunteer work in ways that were meaningful to me and because these relationship(s) existed outside of and detached from the disease state.  There was no possibility of the “pity factor” or outright “discrimination” when associates didn’t know the prognosis for Alpha One; and similarly; I could truly lose myself in my work and thereby manage to forget how sick I was - sometimes for days at a time – when not constantly being asked, “How are you?”

By the time I was officially “on the road to transplant” in the winter of 2007-08 it was time to come clean with everyone and back away from most everything in order to concentrate on all the preparations leading up to the week of assessment tests and potentially relocating to Toronto.  Unfortunately this ended up being a somewhat protracted process – spanning November to late March – due to the holiday season and also the difficulty of scheduling an Angiogram (should it be done in the North East or in Toronto?).  Some preliminary lab tests were able to be conducted near my home community and the results faxed to Toronto General Hospital (TGH).

A great deal of introductory information concerning the assessment process was provided both by telephone and by mail via the Pre-Transplant Coordinator assigned to my case.  In particular, it was stressed that any potential transplant recipient needed to have a support person in place for the duration of the pre and post transplant experience and that this person attend the pre-transplant assessment week.  In my case, that initial responsibility fell to my mother who was retired and therefore most able to make the trip.  But I also planned to explain that I would be taking a team approach to the support person position mostly due to not being able to maintain two households (one in the north and one in Toronto) and not wanting to overly interfere with the lives of the family and friends I could count on for some form, and/or duration, of “support.”

A booklet entitled “Pre-Lung Transplant Assessment Book” arrived by mail describing each of the tests I was scheduled to take at the hospital and included when and where in the hospital I needed to be, how long each procedure was estimated to take, and if there was anything I needed to do to get ready for a particular test (i.e. nothing to eat or drink from midnight before the test).  Aside from diagnostic testing there were also meetings with a Transplant Coordinator, a Social Worker, a Nutritionist and an Anaesthesiologist.  A meeting with a Cardiologist did not take place until after the Angiogram was completed in late March 2008.

The cost of travel, hotel accommodation, meals etc. is the responsibility of the patient.  In my case I was fortunate to be reimbursed for mileage as well as allowed one hundred dollars towards expenses through the Northern Ontario Travel Grant program.  This came fairly close to covering the cost of a car rental and gasoline but took about eight weeks to be received.  The cost of nearby accommodation (even at a “hospital rate”, if you can get it) can easily run over $600.00 and meals for two will likely be at least $40.00 a day so this step along the road to transplant is expensive.  Start saving early.

That week was very exhausting for both me and my mother.  The hospital was only a few blocks from the hotel but it felt like a few miles when walking some mornings – late November is cold and dreary – and the hospital itself is very big and has a complicated layout due to the numerous additions over the years.  The buildings don’t connect very directly with one another on many floors and you often can’t get to where you need to go without almost circling the entire complex despite the fact that you sense there is a diagonal shortcut somewhere.  The ground floor (which is where the food court is located) is the easiest common link to the elevators in each tower.  Most days were very full with some days starting at 8:00 am and not ending until 4:00 p.m. and some tests were not only tiring but stressful.

Just before Christmas 2007 I was telephoned by my Pre-transplant Coordinator and notified that everything looked good and that barring any problems identified during an Angiogram I should start planning to move to Toronto.  So I essentially got decision number four, “You are probably a suitable candidate and it’s almost time for you to relocate to Toronto to be officially listed for transplant and begin the pre-transplant program”, not one of the three possible decisions that I expected; but, I knew I was moving further down the road towards my extreme medical adventure.  It was a difficult kind of limbo to find myself in but it did allow more time to prepare and plan for such an uprooting experience.  And while technically it was still a wait and see situation I decided I should let my oldest son know that I was working on qualifying for a transplant while he was home for the holidays and to wait to tell my youngest son until the results of the Angiogram were known.  As it turned out that would not be until mid April and by that time I was able to tell the hospital that I would make my way to Toronto at the end of May 2008.

The next instalment in this series will cover the move to Toronto, official listing for organ transplant as well as my brief experience with the pre-transplant program at Toronto General Hospital.

Part Three is coming soon, watch for it in the Alpha-1 Canada Community News. Not a subsriber yet? E-mail Jim Mundy to add your e-mail address to our list of subscribers.