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Friday, January 27, 2012

Must watch this video

Here is a great video of a heart recipient on the exact minute of his 10th anniversary from transplant. Short, 3:45, but worth watching.
10 Year Anniversary Video

Interesting LVAD Story

I just received this story from a Google Alert that I get daily. Such a great story and it really summarizes the details nicely. The newscaster says his batteries last 7-9 hours although it has been my experience for 10 months that they last consistently 15 hours. The cardiologist said it was just approved last year, but I think he meant to say that it was approved for Destination Therapy (DT) just last year, it has been FDA approved for Bridge to Transplant (BTT) since 2004. The other funny part of this story is that while I am from the Hudson Valley, just down the road from Albany Medical Center, a close family friend of ours, someone my dad went to HS with was the first heart transplant recipient at Albany Medical Center. They no longer do transplants but it is nice to see them using the LVAD technology as I think it is a miracle. I have debated just living with this for as long as I can that it is so good.  Albany NY Medical Center LVAD patient Video

Wednesday, January 25, 2012

Making a List and Checking it Twice

I sat down last night and began to brainstorm how to get ready for the Transplant event. I watched an episode of Top Chef on Bravo the night before and it got my mind thinking. On the show the did Restaurant Wars, each team having to design and buy decorations for a restaurant as well as create a menu and cook for 100 people in 24 hours. What got me thinking was how they missed some of the big picture things that seemed so obvious. So in creating my to-do list for when the call comes I tried to see the big picture. I came up with a list of things I think we need to have a plan for. These are: 1) What to pack for me and Heidi 2) Create a call tree and notification plan (need to know, would like to know, should know) 3) An initial communication for Caring-bridge to alert people who are following my story 4) Child Care plan 5) Emergency plan - if something tragic happens who to call, where are the critical documents, what are my wishes etc. 6) Fundraiser - Do we want to do one, where, how? 7) Come home plan - When I first came home from LVAD surgery it was crazy trying to figure out life outside the hospital, and it was frightening. What do you do after transplant? 8) Rehab Plan - Cant drive for 60 - 90 days so how do I get to cardiac rehab 9) Contact List - Emails, phone numbers, addresses of people that I know and interact with as well as Heidi For those that read this are there other things we should work on? These seem to be the big items that I have pulled from other books/blogs.

Thursday, January 19, 2012

Clinic Day

Yesterday was clinic day.  I go to the LVAD clinic about every 6-8 weeks.  This usually consists of a blood draw, some time with the VAD coordinator who reviews my device log and care history (daily weight, temperature, and VAD numbers....PI, speed, flow, power), and then some time with the doctor.  Yesterday the transplant coordinator came to visit me and I spent about an hour with her.  We discussed what our response would be if I was called with a heart.  Currently I want to get to the end of April so my FMLA resets and it gets me closer to the summer months.  I explained that to Nancy, the Transplant coordinator, I think she understood.  We talked about the chain of events if I was called.  Specifically who would call me, where I would need to go, how fast I would need to get there, what I could and could not do (stop eating and drinking immediately and no more Warfarin).  In short I need to get ready.  Her advice was to wake up every day and say, "I am getting the call today."  So that means I need to accelerate the signing of our will and living directive, need to organize a fund raiser, set up a call list, set up a communication plan, child care etc.  There is a lot of stuff to do.

I have been sleeping great for many many months since I came home.  Last night I found myself having restless sleep and constant thoughts/fears/dreams about being called for a transplant, arriving and seeing nobody I knew (different doctors and nurses), unable to find my family.  I was so afraid of dying.  I feel week for saying that and honestly am shocked that I had those dreams all night long.  I thought I was further along the process than that.  I find myself wondering what it will be like to have a different heart in me.  I have a very strong sentimental streak in, and I protect things I care about.   I find myself asking am I still me if I have someone else's heart in me?  It makes all the sense in the world and at the same time no sense at all.  I am very conflicted about it.

I am trying to find a calendar tool that will allow me to record my workout activities on my blog.

Monday, January 16, 2012

Time to get focused

The phone rang at 3:30pm today and it was the heart clinic. They wanted to confirm my insurance coverage and make sure that there had not been any changes with the new year. I thought about it for some time and what I concluded was that they were verifying patients they expect to transplant this year. By my count I had 120 days of 1B time from April to August, then about 45 days of status 2 time, then back on 1B on September 15 till now. So that makes 240 days, or just about 8 months on 1B. I can't get an answer about where I am on the list but I am guessing todays's call should be a wake up call. I am not sure if I am scared or excited. I feel so good right now, but it is just a veneer for it could change tomorrow. The reminder that my LVAD is just really life support is sobering. So, I will just continue to put one foot in front of the other, be happy for each healthy day and make sure I am ready to go. Thank god for the YMCA 400yards down the road so I can work off the stress. Less than a month till spring training and just over 4 months till the Van Halen concert at the Xcel Energy center!!!!

Wednesday, January 11, 2012

Not just on Grey's Anatomy

When I was first admitted to the hospital, after the doctors told me I was dying, they offered me two choices.  First I could get a transplant or a LVAD.  I laughed and said, "That thing from Grey's Anatomy was real??"  Turns out it definitely was.

Turns out lightning does strike twice.  If you saw the Heart in a Box episode you will know what I am referring to.  While I have been aware of this trial and therapy for a couple of months this is the first article that I have seen that talks about it.  There are some really cool YouTube videos as well.

Tuesday, January 10, 2012

Link to Latest Transplant Stats

I just got this link from a Google Alert on Heart Transplant.  Since I live in MN I am in Region 7.

Some excerpts from the article:
* In 2011, 1,760 patients on the heart wait list received heart transplants. That figure represents a decrease from the 2,333 hearts transplanted in 2010 and the 2,211 in 2009.
* Currently there are 3,124 patients awaiting heart transplantation in the U.S. This figure changes immediately depending on adjustments. Below is a breakdown of patients currently on the wait list and actual transplants by region.
Region 7 – Illinois, Minnesota, North Dakota, South Dakota, Wisconsin – Currently waiting are 389 candidates. 175 heart transplants were performed in 2011.
* The breakdown of heart transplants by blood type in 2011 are listed below:
  • Type O = 719 Waiting = 1751

  • Type A = 711 Waiting = 1015
  • Type B = 238 Waiting = 327
  • Type AB = 92 Waiting = 70

Below are the statuses on the current heart transplant wait list:
Status 1A = 276
Status 1B =935
Staus 2 = 1,0167
Status 7 = 938

Sunday, January 8, 2012

A new year and a new challenge

This is my first blog post ever.  It is Sunday January 8th, 2012 and right now the Giants are beating the Falcons in the early playoff game. 

I wanted to capture my thoughts along the way to my transplant.  It is funny how it has become mine even though it is not guaranteed and I have no idea when or even if it will occur.  Since my LVAD surgery last April I have recovered and done well.  However, no amount of hard work and discipline on my part has allowed me to overcome the damage to my heart.  My most recent echo showed an EF of 10.  Despite the low number I have completed five 5K's, albeit as a walker, since my surgery.  My personal best is 36 minutes.  In August after no remodeling and many discussions with my doctors we decided to move forward to transplant. I am currently on the transplant list as a status 1B.  I have been 1B since about September 15th.  Because I have a LVAD I get 30 days of 1A time without being hospitalized and provided I remain healthy I will take the 1A time in June after school gets out for the kids.

Emotionally I am in a really good place right now.  For 9 years I ran as fast as I could away from my heart disease.  I didn't even know I had heart disease, but that is another discussion.  We couldn't talk about it in our house.  I just ran from it.  Amazingly, when I received the first diagnosis of heart failure I was relieved.  I didn't have to run any more.  Now as I move forward to the next step my attitude is more about refusing to let this define me.  I try every day to live my life as normally as possible and not be a heart disease victim.

Which leads me to this blog.  Now that I am on this journey and fight for my life I want to capture what I am feeling.  I have been through so much in the past year, but as I have experienced with my own family, I am finding it heard to remember some of the things I went through.  So I hope to capture my thoughts here.........