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............
Having only been going through this since February, (with my son) it's hard to know what to say to status changes, or anything else. Having LVADs and transplants are both scary endeavors, that can change on a dime.
ReplyDeleteI overheard my son discussing being waterproof, just yesterday. He longs to just be able to lay in a tub of water, or swim, or go out on a boat. He is currently in the hospital, listed as 1A and has already gone through a pump exchange after only having the first one for 5 months. The second pump has developed a clot after only 2 months.
2013 has been a huge challenge for the entire family, but especially for him.
I'm following you, so I hope you will update more often and keep me posted with what's going on.
Good luck!
Peter,
ReplyDeleteI'm glad to see an update from you. I've followed your blog for a while, but have never posted anything. I, too, have CHF and cardiomyopathy, as a matter of fact, I'm coming up on my 7 year anniversary of being diagnosed here shortly. I'm doing great, but have been told I'll eventually need a transplant, so I try to follow stories of survivors and hear there successful stories. Yours is by far the best!!
Please keep posting or have your wife post once you receive your wonderful new heart. You are a great inspiration!!