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, March 9, 2010

Looking for a rock.....

.....to crawl under.

What has been/is going on:
  1. Three consecutive days of heart transplant evaluations planned for March 16th - 18th. University of Colorado Hospital (UCH) wants to do a full slate of evaluation tests before placing Tyler on the transplant list. Of course Anthem Blue Cross doesn't want to pay for evaluations that were already done in Houston. UCH and Anthem are supposedly working out what tests will be done and paid for. Otherwise we would have to come up for the money to pay for the tests. And if the tests aren't done, no listing on the transplant list.
  2. Still waiting on Anthem Blue Cross to approve, deny, or partially pay the Cozumel medical expenses including the air flight. We are stuck waiting for them to play the paper work shuffle games before we can file with the travel insurance. Even if Anthem would just deny the claims we would be better off, since we could send what we need (again) to the travel insurance company.
  3. My kidney stone surgery. Surgery went well and I had thought it went extremely well since I never felt any pain. Found out I still haven't passed the fragments. They are still sitting in my kidney. I would like just one of our ailments finished off. Maybe I'm asking to much? I'm sure the fragments will pick the most appropriate time to pass (like during a business meeting).
  4. Tyler caught his drive line in a car door. Also fell down a couple of exterior concrete steps and skinned his knee (yes, the knee on the bad leg). Luckily he is on blood thinners....oh wait a minute. Tyler called me to let me know what had happened so I figured since he was talking there was no reason to panic. He thought the same thing. Amazing what doesn't cause a panic anymore. He only split the cord cover a bit and barely exposed the internal wires. Went to the hospital and they taped it up and did an x-ray. Luckily none of the actual wires were damaged. They tested to see if there was damage to particular wires in the cord. Certain wires interact with the batteries and others to the power base unit. So you could cut some wires and have the batteries still work but not main power, or vice versa. Previously, if the cord was damaged, it would mean replacing the LVAD by having open heart surgery again. Thankfully there is now a repair-kit approved by the FDA. You can pick it up at any local hardware store....
  5. Been to a couple of VAD clinics at UCH. Anne and Kathe, VAD Coordinators, are great and funny. So far Tyler's blood work has remained in the range they want. Dr. Brieke, his primary cardiologist now, has a very nice laid back style. We have also met Dr. Reece and Dr. Cleveland, the heart transplant surgeons.
  6. A new year started for my insurance coverage and I have already had to meet the yearly deductible due to charges for oncology CT scans and x-rays, and the kidney stone surgery.
  7. Tyler not wild about going through a heart transplant and sometimes feels like he would rather stay with the LVAD. I still would like him to get the transplant. No more wires, can sleep in whatever position he would like, and (the most important) he could use the vacuum cleaner again!
  8. I sold my car. Just using Tyler's car for now. We'll see how that works out when Tyler is ready/able to drive again. But for now the extra monthly income will help out a bit.
  9. Tyler's parents coming for a visit. Haven't seen them since I used to live in Texas. I've fallen out of touch with them a little bit because Tyler is able to talk. But it will be nice to see them again.
  10. Tyler and our neighbor, Karen, took the dogs for a 45 minute walk. Tyler did this without using his cane and it went well. So the leg/foot is still improving. Still painful, but getting stronger. Still need to get his weight up. But he is now off the Nexium (acid reflux) and Furosemide (diuretic) pills.
As for life in general....not so great lately. We are still pushing through each day but it gets depressing. The medical bills are piling up, not sure about the transplant listing, still wondering what is going to happen, work income isn't enough to cover all the costs, and for me .... I can't seem to get a plan in place. Trying to decide if I should get a second job, but that wouldn't give me the flexibility to be available for cut cords, etc. Tyler is trying to decide what to do about bills and debts.... wants to hold on to his good credit rating and do the right thing but without being able to work and still waiting on a heart transplant, it seems insurmountable. Still waiting for disability payments to start. We are both worried about hitting Tyler's lifetime insurance cap with Anthem and what to do about future insurance for Tyler. Bowser, the lab, got an ear infection. Juggling my work needs (have two out of town trips coming up) versus what help Tyler needs. Does he need someone to stay overnight or not. But this is up to Tyler. There are LVAD patients that live alone, so he'll basically need people "on-call" just in case something happens.

Then for me there is the intermittent wondering, when things are very quiet, if Tyler is still alive or just napping. I know the last statement was pretty heavy and it isn't as if I'm scared that would be the case, but the thought does run through my mind every now and then. Just part of this experience.

Then there is the uncertainty of what we will be able to do since our relationship is "unrecognized" by the federal/state governments. Okay, a political moment. We are in this together but we have to make sure that if we aren't entitled to any "benefits" in this relationship, we are also not required to satisfy the "responsibilities" of a recognized relationship. Sorry, the government can't have it both ways. Okay, they can, but it doesn't mean I have to like it.

About two weeks ago I finally felt glad to be home. There were just to many adjustments/responsibilities to go through at the beginning. But we are home. I do miss my Houston buddies .... St. Luke's staff, Janet and David, and all the great people that helped me through the beginning of this. We haven't met other transplant patients in Colorado and it was nice to be able to commiserate with Janet. David had his own scary issue come up due to a staph infection. Luckily it didn't infect the drive line and his is okay.

I miss the days of just getting a cold.

It was hard to put out posts to the blog in the past month because I wasn't sure what to write and wanted to concentrate on work. The challenges also seem/seemed overwhelming and I feel like I'm whining. And it isn't fun to write about being depressed. But I haven't really been in the mood to do the "keeping our chins up", "hoping for the best", "we'll pull through", type of writing. But, I keep trying to remember that if I can believe that bad unexpected things can happen (cancer, heart attack....), then I need to believe that good unexpected things can happen. Like having Ed McMahon show up with my Publisher's Clearinghouse prize.....oh, wait a minute, he's what? .....damn! Guess that isn't going to happen.

Unfortunately for my mother, we had two consecutive phone calls where she caught me at my lowest. She thought I should ask my doctor about taking anti-depressant pills. I joked with her saying my doctor said that was what mothers were for. ;-) I appreciate the concern, but I'm not quite ready for pills. Amazingly I think Tyler and I still have fight left in us. I'm not sure what the other side of this will end up being, but sometimes I wish it would just get here faster.

Robert

4 comments:

  1. 世間事沒有一樣沒有困難,只要有信心去做,至少可以做出一些成績。........................................

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  2. Thanks for the update Robert. Believe me, you don't need to be concerned about how often you can do that. We're happy to hear news whenever you feel like sending it. We're still praying for you, and you're right - you are definitely due (overdue?) for some positive unexpected things.

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