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.

Tuesday, December 1, 2009

Loosing Faith

Note: Please understand the following is an expression of my anger phase.

This is never ending. There is to much to do. I have no faith anymore that this is doable. I want to strangle all the staff at St. Luke's. (A side note: the nurses and PCAs continue to be wonderful. Caring, attentive, helpful with local information.)

I want to go f'ing home! I want Tyler out of this hospital. I want to know what we did that was so bad to be put in this situation. I want the phrase "..works in mysterious ways" to actually mean something. I want to know what I'm supposed to be doing and striving for.

Tyler was going to have surgery today (12/2/2009) on his leg. Well, I guess not. His blood clotting factor is not high/low enough. Maybe tomorrow. Thank goodness that the doctors have been so "proactive" as to wait two weeks to deal with this. Thank goodness that it didn't take both Tyler and I complaining (it did!) to get the doctors to pay attention.
So St. Luke's can replace organs including a heart, but can't figure out how to deal with a blood clot/cyst in a leg. Hmmmm, maybe we should be in Denver for the leg and Houston for the heart. What is one more thing to deal with?

To do:
Make sure to watch the LVAD DVD with Tyler.
Make sure to learn how to change his wound dressing every day.
Go to the LVAD class.
Figure out what we'll need if we can ever get back home. Can we transfer care and be on a transplant list to Denver? Is that the right thing to do?
Deal with finances to make sure Tyler and I's bills hold steady until, what, medical bankruptcy?
Remember to thank the wonderful people who have already donated to Tyler and I, and who understand/accept our relationship. Remember to look past those people who don't understand.
Remember to thank those people in our community that have done everything they can to guide us through the "system". Even the Wells Fargo banker is going out of his way to help us try and hold it together.

Remember to try and figure out how to deal with my cancer treatment (Ha!).
Remember to take this day by day (the hardest part)!

Deal with comments from St. Luke's:
"We are working on getting you guys back to Denver and back to your old life....."
"Well, you should be going home next week, next month, yesterday, next year..."
"Well, the doctors get possessive and may not want you to transfer your care to Denver."

Can anyone one say indentured servant? Guinea pig?

Deal with trying to work so I can still bring in income.
From the internet provider in Houston: "Static IP? What is that? No one asks for a static IP here in Houston." In what suburb of hell have we landed?

Both Tyler and I have become very frustrated and angry with the situation and the responses we are getting. No straight answers....ever. And then we have the audacity to say to St. Luke's that we want to go home. And further more, where have the doctors that are so "possessive" gone? It seems the only doctor that has any interest is the neurologist. The others send surrogates who don't know what is going on and step into the room for a second and then leave, without saying a word. I don't think Tyler and I are asking to much to be informed about what is going on. Why do we have to constantly complain to get any attention? Why does Tyler have to say to the lead doctor, "....well, I'm not leaving this hospital with a fake heart AND a bum leg!", before the doctor pays attention?

Tyler is lonely and anxious. Nicole coming out helped a lot. I want to be there to help him through this, but my days are spent putting out fires, avoiding new ones, figuring out how to get back to Denver, figuring out how to live in Houston if we get stuck here. Juggling and fighting with insurance companies, mortgage companies, banks. Slashing expenses as fast and as deep as I can.

When? Where? How? All the questions that have still to be answered.
When can we get out of the hospital? When will they deal with Tyler's leg? How soon can Tyler start physical therapy again? How do we get back to Denver and our home? What is life going to be like?

Get Social Security Disability filed. Get Wells Fargo checking handled. Get SUV loan handled, mortgage handled, phone, utilities, house, condo, Houston, medical, mental....on and on and on. I would do this over and over again for Tyler and I. It sucks, but this is where we are at. And "so it is".

Okay, rant over.

Tyler made Denver news. In the December 1st, 2009 paper, a regular columnist (Penny Parker) mentioned Tyler and the fund raiser at Rock Bottom Brewery. There are several people working very hard to make this a success. My thanks to them and to Rock Bottom for doing this. It is the love and support of friends and family that will get us through this.

I spent the night in the hospital room with Tyler, on the torture twin bed couch thingy. It was nice to at least be close to Tyler overnight. I'm trying to figure out how to schedule my day so that I can be with him at night. I'm also trying to keep his room straightened up. Most of the staff just throws stuff into his room and it is a pile of clutter when I get there (oops, another rant slipped in). He is still in a lot of pain and stuck in that bed. This is not Tyler. He keeps pushing himself to do as much for himself as possible. He gets dehydrated but he isn't supposed to drink so much water as his sodium levels are low.

We will overcome this, if for no other reason than to spite the universe that has put us in this situation! I know that support is out there. I know that Tyler is a fighter. I know that something will come of this that is meant to be. I'm just hitting a large speed bump in this event. Tyler and I will be okay.....someday.

(Final Note: Please, please, do not freak out about this posting. Just needed to unload so that I can take the next baby step.)



  1. Good Robert - get it out there so we can all support you in the best way possible. Baby steps. Baby steps. Baby steps.

  2. Of course you need to vent, Robert. It wouldn't be healthy if you didn't. You are a very strong person, but life has given you an awful lot to deal with lately. We're just sorry we can only be a "virtual" shoulder to cry on.

  3. Everyone's listening!! Venting is healthy.. venting is a MUST!!! It is cathartic!! Hang in there... Susan

  4. If being there, physically, for you wouldn't be such a distraction from the things you need to do, I would be on the next plane. Vent, cry, then do it again.....