From the outside, many people will say that my illness is a curse. I'm not convinced. I have faced challenges that have made me stronger in self and stronger in many relationships. I have also met some incredible people.
When I was told that I may need a heart transplant my Mom was connected with an old friend from high school that works with the transplant team in London. It's a very small world. It was this lady, Jane, that made our situation seem more hopeful. She was the first person that mentioned the LVAD to my Mom and told us to get to a hospital that could supply the life-saving device. Unfortunately, London has not accepted the LVAD into their hospital, as of yet. I was initially followed in London as an out-patient for a heart transplant but could not continue as a patient there for this reason.
Well we have been sending emails back and forth with Jane for a long time now and finally this week we got together. It was a wonderful visit! She brought her partner Bill Wohl with her, which was another wonderful surprise.
Bill is from Arizona and is not only living proof of a successful heart transplant, but living proof of the SynCardia Total Artificial Heart. I agree, I had never heard of it either. To briefly summerize, it is similar to my artificial heart but it is for the entire heart. Bill's heart was no longer in his body, this had taken it's place. That's what I said, no heart.
The SynCardia Total Artificial Heart was in clinical trials at the time Bill was supported and he was one of few to experience this device. The patient must remain in hospital on this heart because it requires close monitoring and it is very large.
In the states, recipients are allowed to meet their donor family. Something not accepted in Canada. Bill was connected with his donor family and has learned so much from this experience.
You can't deny that his story is interesting. Go to this link HERE to read more about the story and watch a FOX TV highlight.
Jane's story is a little different but there is certainly plenty to learn from her as well. It took specialists years to figure out that she was living with heart failure. She was told she had asthma for the longest time and took puffers regularly. This did not lessen the symptoms but she was lost at what to do. When the professionals finally determined she was in severe heart failure she was sent by air to London to undergo an emergency heart transplant. There wasn't a heart available for her at the time and so they administered several drugs. It was determined that since she had never been on heart medications before, they were doing great things for her. Jane was no longer in severe enough condition to require the heart transplant and she was sent home. Her left-sided heart function is now at about 25-30%. While she does not need a transplant, she continues with this severe lowered function. I know what it's like to live with 20% left-sided heart function and I was beginning to plan to change my life. There are many things that I just couldn't do. I didn't expect to go bike riding, canoeing, hiking, or even work full time ever again.
Jane told me that she would have preferred a heart transplant. There is no end to her illness.
While she is living with this barrier, she has shown me opportunities to make situations better. Jane became a volunteer with transplant teams and has made improvements to save lives. She is a wealth of knowledge in this area and I will look to her for advice and guidance when I pursue my interests.
It was a wonderful visit with Jane and Bill. I look forward to our next visit.