Tyler's Heart

Pictures - Pictures from Houston.
LVAD Video - A YouTube video about living with an LVAD.
HeartMate II Video Clip - Short video clip about the pump Tyler has.

Another good blog to read is from our friend Bill. Cozumel Part 1 - This Might Be Habit Forming.

Wednesday, April 14, 2010

Still Waiting .....

"Not motivated for a heart transplant". 

Seems Tyler and I might be a bit to grouchy for a heart transplant.   I guess our interview with the transplant social worker didn't go so well.   Hmmmm, why were we grouchy that day?  Okay, we got word that Tyler isn't on the transplant list yet.  Wasn't a final no, just some concerns.  The leg issues and narcotics for the pain is one and valid.  As for not being motivated or not understanding the importance of a transplant..... not buying that one.   If so, then I'd rather be in the Caribbean being unmotivated.   We just had a bad interview (wasn't horrible, but we have been a bit frustrated lately).   Dr. Brieke (Cardiologist) and Kathe (one of the VAD coordinators) are fighting for us.   Kathe is even checking up on my health and I think has become my "Stephanie" (St. Luke's transplant coordinator) in Colorado.  That is a big compliment, but I don't want to fan any flames of competition between Denver and Houston!

Tyler has an appointment with a director of the list April 19th so that the UCH staff can meet Tyler and get to know him and our situation better.  We will meet the transplant team more as time goes by and everything will be fine.   Sometimes I think Tyler and I can be a handful for the hospitals! I even mentioned that I was going to have to "re-engage in this full time again" if things didn't start progressing better.   Tyler is handling his care and I want Tyler to control his "destiny", but I may be getting a bit impatient.  Must.... control....  my....  control...   issues! 

Tyler has taken great strides in developing the strength in his bad foot.  The neurologist thinks it is stronger than his "good" foot.   He also continues to try and gain more weight (up to a limit...I mean we are talking about Tyler and you know, god forbid he gets fat.)   He has also gained more independence and is able to make short errands by himself.   He still gets tired and takes naps that are usually 2 hours or so.

There was another comment concerning listing on the transplant list: "... he is doing fine on the LVAD".  Tyler's response was "...let them have an LVAD as see how fine it is.".   I, on the other hand, went through the stages of coping in about an hour.  I'm getting much faster at it.  I went from "What?!" to "....I'm going to bomb so and so", to "eh, it will happen when it happens" pretty quick.   And it will happen when it is ready to happen.   We just need to "meet" the staff at UCH more.  I forget that my "meeting" with St. Luke's was intense and they were able to figure us out since there was so much "quality" time together!  I still miss my Houston team, but Colorado will pull through....no doubts.

Disability payments haven't started yet for Tyler and maybe they will in May.   The will only go back to a March date since there is a 6 month period before being eligible for payments.

We have had some bigger fights and both have wanted to just walk away.  But, we get over that intense moment or moments and keep moving forward.   We still have days of depression and it appears I have taken to grinding my teeth in my sleep at night but only about 3 times so far.  We tend to alternate depression days.  But we are still kicking (and screaming) along....

We had another "alarm" event.  We were being graciously treated to a dinner out with his parents from Lucy and Andrew at Elway's restaurant.  It is a very nice restaurant and was wonderful treat.   During salads we heard the battery alarm beeping.  This was the '15 minutes' remaining alarm.   Tyler and I went outside and swapped the batteries.  Decided we shouldn't do that in the middle of the restaurant.   I think we worried a couple of people but for us it was just another day.   We have become used to this and take it in stride, but it still tends to freak out some people.  For me at least, it is still better than last fall.


Robert

11 comments:

  1. 如果相遇.你會感到相知.那麼.有一種習慣叫做陪伴;如果陪伴.你會感到珍惜.那麼.有一種甜蜜叫做存在!......................................................

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  2. 向著星球長驅直進的人,反比踟躕在峽路上的人,更容易達到目的。 ..................................................

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  3. Lewis Richardson PCA ST Lukes HoustonApril 25, 2010 at 3:33 AM

    Hey Robert and Tyler! It's Lewis you know the pca from st lukes houston. just wanted to check in and say hi. hope all is well and we all have been thinking about ya and praying for yall. hey drop me a email every once in a while please let me know how yall are doing. maxwell1869@hotmail.com i will talk to yall later FROM ALL OF US ON 12 TOWER WE WISH YOU THE BEST AND GOD BLESS! Lewis

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  4. 先告訴自己希望成為什麼樣的人,然後一步一步實踐必要的步驟。........................................

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  5. 生存乃是不斷地在內心與靈魂交戰;寫作是坐著審判自己。.........................

    ReplyDelete