Help Tony's Lung Transplant Journey
Tony's health has been deteriorating rapidly and so he was referred for assessment for transplant. He's been actively listed since early February and he's just waiting for the phone to ring. [Which it DID - on May 4, 2016. Check the updates for his post-transplant journey.]
Turns out that except for his lungs, he's in great shape! A lung transplant will make all the difference - and according to his GP, he'll 'be a new man.'
All medical costs related to Transplant in BC are covered...so...
Why Do Transplant Families in BC Fundraise?
1. Families are financially as well as medically struggling. By the time a patient is listed for transplant they have been chronically and increasingly ill for some time. In our case, Beth has taken on an increasing caregiving role - with a concurrant decrease in her paid work.
2. Transplant recipients must have a full-time support partner. If a transplant patient doesn't have someone to accompany them in Vancouver for the duration of their transplant and follow-up recovery period, they aren't listed for transplant. This means that Beth will have a further decrease in her earning capacity for the 4-6 months that recovery and rehab takes.
3. Non-medical expenses aren't covered. Financially stressed families are required relocate to one of the most expensive centers in Canada for the short-term at a time when they are least able to afford it.
4. Charities don't cover every situation. There are low-cost and sometimes free housing options for families with children, and for adults who receive heart and kidney transplants. There are existing gaps that adults requiring lung transplants fall into.
While we wait for government policy to catch up to the medical miracles we can perform in the 21st century, we'll continue to see families fundraising in BC (and Canada) so they can access the help they need.
Did you know: From a government services standpoint, it is less expensive to transplant a patient than to carry them through a chronic illness until they die?
We're asking for help so we can access suitable accommodation near Vancouver General Hospital when the phone rings.
We estimate that we will need to raise about $25,000 to cover these expenses.
Any extra money we raise will be used to help other families in our situation.
One last thing...
As we work through this process and meet more British Columbians who have been helped by transplant, we're continually amazed. Transplantation has grown by leaps and bounds - with post-transplant survival rates and increased health getting better all the time!
We are, however, also learning about the significant gaps in service for families that find themselves going through the process.
We've started a website to encourage people to register as organ donors and find information about the organ transplant process in British Columbia. Please swing by - we're at TransplantRogues.com.
THANK YOU FOR YOUR SUPPORT!
Policy and Curriculum Writing Family Caregiver Needs Work!
Last year at this time we were still in Pre-Transplant Assessment.
It was a hectic and trying time for both of us. As for me, I was working to fit in consulting hours in the spaces between racing around for appointments (we counted 51 in 6 months), medication refills and all of the responsibilities of keeping up the house and caring for a very ill spouse with failing lungs. And making endless cups of tea!
We're not sure how, but we made it through 6 months of Pre-Transplant Assessment. And then the waiting list - which is a misnomer as we had pre-hab and some appointments. I was still able to put in some work hours and keep us afloat. We were fortunate that the wait was only 3 months.
When the call came, we had to relocate to Vancouver which is 4 hours away. I had already resigned from my local networking groups about 6 months before and we had a lot of family support during this time.
Now we're home and feeling stable (despite a surprise week in the hospital back in Vancouver a few weeks ago that put a bigger dent in the bank account) - and facing another challenge.
We've exhausted our financial resources and I need work! It's been about a year since I've been networking in my home community and while I'm set up and ready to work from home, I'm still a number of months away from getting back involved with in-person networking.
Transplant is truly a marathon, not a sprint! Caregiving diminishes, but is never eliminated. It makes a 'regular' job difficult.
Here's the Ask:
For Comox Valley Peeps: I do consulting for small businesses and organizations in the areas of Policy and Procedure documentation and training, as well as providing support in creating and editing documents like annual reports. Hate this stuff? Some of us love it. If you know someone, please share with them.
For Transplant Peeps: We have a workbook for sale online via http://TransplantRogues.com. If you know of people about to start their transplant journey and they're a bit freaked out about the steep learning curve with respect to medical knowledge and the financial burden please send them our way!
For Post-Secondary Students Who Want To Graduate With A Job: I'm also still looking for post-secondary students who want some effective *and* cost-effective online lessons and coaching so they can actually put their education to good use. #DontGraduateClueless http://TheCareerTutor.com. I especially love Arts students because they have so many skills and talents, but nobody's ever really helped them identify their potential contributions!
Thanks in advance for sharing. <3
Tony's clinic visits are every 2 weeks now and he has a spot in the Heart Rehab program in the Comox Valley starting in September.
We're busy eating weirdish clean-out-the-fridge meals and not worrying too much about packing as we'll have 2 trips.
We'll miss this little suite - it was like being a student again.
#YQQ or Bust!
This will diminish as he gets farther out from the transplant and his meds get reduced.
We're now getting ourselves prepared for going home. We expect to be promoted to clinic visits every 2 weeks soon and we'll think about moving home then. Tony has an opportunity to get into a rehab program in the Comox Valley starting in early September so we're making a case!
We spent almost 2 hours walking around Granville Street in Vancouver today. The weather's really good and now I'm home for a rest.
My breathing is getting stronger each day - I just have to make sure I take my pills, do my exercise and do what Beth tells me.
Take care and be happy love from Beth & Tony
I am so happy that you are on the mend...one day at a time. The world isn't going any place without you!
Love to you both. I do hope you achieve the goal listed. Fanny Bay, and the Comox Valley are richer for your presence as giving residents...and for simply being the people you both are!....so gracious, always with a smile....no matter the troubles that plague. You both are well loved and thought of, often...xo