Now that Mechanical Circulatory Support (MCS) is becoming a better known therapy option, articles like this one do a great job of telling the story. I wish I could say I would be explanted, but the truth is the quality of life I have with my LVAD (nicknamed Denny), is worth it knowing I will get a new heart sometime, hopefully soon.
Met another heart failure patient today, someone who is going directly to transplant. He and I might be buddies before too long. And, he knows how to play poker (hopefully spades too).
Check this link out:
http://online.wsj.com/LVAD article/
Monday, September 30, 2013
Saturday, September 28, 2013
Is congratulations the right word?
I haven't posted in awhile; life has a way of moving on. This past week I went to clinic for my 2.5 year follow up and did the normal stuff (labs, echo, pacemaker clinic, visit the docs). I have been trying some new driveline bandages and have developed a skin infection on my driveline site. I am now on antibiotics and have been put back on 1A, the top of the list. If I am not transplanted during the time I am on antibiotics, I will have chemo to lower the level of my antibodies. Then I will be hospitalized to wait for a new heart.
I shared this with my coworkers and peeps the past few days. People say "congratulations" when they hear that I am 1A, and then we look at each other wondering if they said something wrong, what should I say back, etc. There is no inappropriate response, but I am not sure there is an appropriate one. I guess this is another one of the things in this journey that there isn't a book you can read to figure out how to answer the question.
I am both excited at the prospect of getting a heart, since being 1A is what I need, but it does make me spend more time wondering if today is the day. The phone hasn't rang since I went to 1A on Thursday, but I have had dreams each night about it.
I am definitely ready to be done with the LVAD. I love my Heartmate II, I have done so well with it that I sometimes forget that I have this device. But I am quickly reminded as I tie my shoes and the batteries smash into my head, or I get out the car and the batteries are wrapped up in the seatbelt, that things aren't normal. I am ready to be waterproof, to swim and run again, to be able to play my guitar and not hear the hum of the pump.
Several of my LVAD friends have taken the next step and received the gift of life in a new heart. I can't wait to join the ranks............
I shared this with my coworkers and peeps the past few days. People say "congratulations" when they hear that I am 1A, and then we look at each other wondering if they said something wrong, what should I say back, etc. There is no inappropriate response, but I am not sure there is an appropriate one. I guess this is another one of the things in this journey that there isn't a book you can read to figure out how to answer the question.
I am both excited at the prospect of getting a heart, since being 1A is what I need, but it does make me spend more time wondering if today is the day. The phone hasn't rang since I went to 1A on Thursday, but I have had dreams each night about it.
I am definitely ready to be done with the LVAD. I love my Heartmate II, I have done so well with it that I sometimes forget that I have this device. But I am quickly reminded as I tie my shoes and the batteries smash into my head, or I get out the car and the batteries are wrapped up in the seatbelt, that things aren't normal. I am ready to be waterproof, to swim and run again, to be able to play my guitar and not hear the hum of the pump.
Several of my LVAD friends have taken the next step and received the gift of life in a new heart. I can't wait to join the ranks............
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