So after my last post I figured I needed to get engaged and meet with my doctors to make sure I had fully considered the risk of waiting a year. After lengthy discussion and reflection we have decided that that is not in my best interest. As my doctor explained it comes down to perception and how numbers can manipulate or distort reality. It seems simple to say 15 years after transplant and 1 or 2 years on the device maximizes that time (15+1, or 2....). The reality is that I probably have some level of risk of an adverse event occurring, significantly higher than any healthy person,, that I have grown to tolerate on a daily basis. Similar to a soldier making a foot patrol in hostile territory. You just get used to it and after awhile ignore it. If that risk is say 5% and I were playing the lottery I might take those odds if I thought I could win. If on the other hands that represented risk that something devastating would happen to my family on the next car ride I would never take those odds. So, how can I take them with my life? So after much reflection I have decided to take my 1A time starting on June 18th. I have 30 days of it coming to me for free (meaning no time in the hospital). Hopefully I am blessed with a heart in this time. I think about everything I can do now and it is bittersweet because I can't swim with my kids or run or road bike. I don't feel bad about that at all (well I do miss swimming with the kids a lot!), but I think by not challenging myself to move forward and get my life back unencumbered by cables, batteries, and shower bags, I am actually doing the 1 thing I swore I would never do, define my life by heart disease.
We were running a straw poll around the house on what date I would get a new heart. Unique things that you don't think about unless you are going through this, but hearties celebrate a 2nd birthday....the day the receive their new heart. How cool would it have been to get a new heart on my birthday in June? The kids chose that date of course. Unfortunately that won't be the case......maybe 4th of July?
The real countdown.....18 and a butt days..............
Your blog sounds alot like mine. I am on LVAD and just used my 1 month of 1A status. I sold LVAD squares guessing the date and time I would be transplanted. The winner would get half pot/half pot to charity. Unfortunately, I was not transplanted. All money went to charity.
ReplyDeleteBeing on 1A status for a month gave me hope. It was a little bit of a let down when I did not receive a heart, but I had adequately prepared myself. I am currently walking 3-4 miles 5 days a week and doing a very light workout with weights.