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.

Monday, June 28, 2010

LVAD Social

Today we went to Univ. of Colorado Hospital's first LVAD Social.  I'm not sure if this was the official name of the event (okay, it was Mechanical Circulatory Support Meeting or something like that, but I'm calling it a social).   It was very good to meet the other LVAD people in the Colorado area.   In fact, we met one woman who had just gotten back from St. Luke's where she had Dr. Kar as her doctor and Peggy as her VAD coordinator.  And she went through the same floors as we did.   Made me miss the St. Luke's staff (and gave me some very weird flash backs).   She told us that we were mentioned to her while she was there.

The group was a mix of ages and most have the LVAD as a destination therapy (not going to be put on a transplant list).   In fact the woman we met won't be available to be on the list for 5 years as she had just finished chemo the week before her heart event.   Kind of made me re-evaluate our bad luck...... maybe it wasn't as bad as it could get!    Everyone was very nice, talkative, and very upbeat.    Some had just gotten the LVAD while others have had there LVAD for years.    

We also went to clinic today and things still look pretty good.  Tyler's INR ratio dipped slightly, but not enough to change anything.  We were able to have a good "heart to heart" (pun intended) with Dr. Brieke about life with an LVAD vs. a heart transplant.   It has been good to have the time to weigh the risks and benefits of both so that we are ready for the next step when it happens.

We are taking a trip to Indiana on July 8th so Tyler can visit friends and family.   We are going to drive instead of flying so we can avoid the airport security headaches with all the equipment we'll be taking.  This also gives us the opportunity to take the dogs (Toby and Bowser) with us on the trip.    Should be interesting!


Tuesday, June 22, 2010

Doctors and more Doctors

So what has been happening since April?
Life has calmed down somewhat, but Tyler continues to have multiple doctor appts.  Orthopedic, General, Cardiology, Neurology, Psychiatry  & VAD clinic.   Due to the meds, which caused constipation, Tyler developed a hernia.  At first there was going to be surgery, but now that he is off the Fentanyl and has reduced the hydrocodone, it appears the groin hernia is reduced enough that surgery isn't necessary.  There are still some other issues, but due to decorum I wont' go into those.  I figure talking about his constipation is good enough for now.  His leg is getting better and better.  The neurologist said that the damaged nerve was his sciatica.  Great.   Now he can walk around saying, "oh, my sciatica!" like an old man.  But they also said from their test that they expect full recovery.  They also said the pain will probably get worse as the healing continues.
With the Univ. of Colorado Hospital staff, we have been able to adjust some of the meds (reducing some and eliminating others).  His INR (blood clotting factor) dropped a bit (to about 1.2) and they added an extra amount of Warfarin Sodium.  This got the level back to where it was supposed to be. 

We lost power to the house in May and what a fun time that turned out to be.   We were asleep when the power went out and the main power unit that Tyler is hooked to at night let us know the power was out with piercing alarms.   Tyler switched to batteries and we thought "that was that" and went back to sleep.  Unfortunately the power came back on and then went back off.   More alarms.  Finally, in the dark, we were able to disconnect the cables so it would quit alarming.   I wondered how long the power would be out before we would need to make some plans.
Well, it seems being on the power companies list really works.   Kudos to Xcel Energy.   About and hour after the power went out, the crews were outside the house working on things.   At 8am there was a knock on the door.  The power had been restored but guess whose trees were causing the problem! 

We are now in June and Tyler is getting stronger to  work out with his trainer Lasha.  The hospital staff has been impressed with his efforts.   There was even mention of trying a 5K.   We'll see.

It is good to be home and Tyler continues to try and figure out the next steps.   For now he is still not on the transplant list.   At first we were not happy about this (let's get this over with!.... Robert is tired of blogging!), but this has turned out to be a good thing.  It has given both of us some time to adjust before the next big thing.   Tyler is also now dealing with his own meds (scary) and changing his dressings.   He continues to become more and more independant.

I've been following my friend Janet's (Houston) Facebook postings.  Appears a family that was there when we were (Chessers) are having issues with a heart transplant rejection.   Tyler and I talked a bit about this and he is still trying to get his head around having the heart transplant.  A little more time on the LVAD will hopefully give him the time to figure things out.

Other than that, I continue to try and make things work at work.   Tyler is still trying to figure out how to rebuild and how we will deal with things.  But thanks to the wonderful benefit in Denver last fall, we have been able to make it to this point.   Life is actually good, just scary at times.   Tyler and I took the dogs for a walk last night.  I was riding my bicycle and rode ahead to the house.  After a while I took the bike back out because Tyler still wasn't home.  Yes, the thought ran through my mind!   Of course, there was Tyler talking to a neighbor.   Sometimes things actually don't change.