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.

Sunday, February 14, 2010

No pain, no gain

We are both doing fairly well. Tyler should be placed on the transplant list again sometime next week. Looks like he will be a 1B status. The transplant surgeon commented that typical wait time is between 6 weeks and 8 months, with about a 14 day average recovery.

We met with a neurologist about his leg/foot issue and they will be scheduling a nerve test to further diagnose the nerve damage. But the neurologist felt that the nerve(s) were regenerating and should continue to get better over time. Still trying to deal with the pain medicine so that a good balance between pain and the number of meds can be found.

Tyler continues to do his cardio exercise. Lasha, a friend, comes over about 2-3 times a week and takes Tyler to the gym. His walking is getting better, but since he still can't really feel his foot completely, he is still walking with a cane and can't drive.

I've returned to working more while scheduling Tyler and my doctor's appointments. I had my kidney stone checked out and will be having surgery March 1st. The procedure is Extracorporeal shock wave lithotripsy (ESWL). Basically sound waves are blasted at the kidney stone to break it up, so that it can pass. The kidney stone has been lodged in my kidney since last year. The doctors knew about the stone last year, but wanted to attack the cancer first. The stone is not really causing any massive pain right now but I don't want to wait until it dislodges. Hopefully the surgery will break up the stone enough that it will pass through somewhat unnoticed. So, I finally will get some pain meds also! What a sight our house will be those couple of days! There is also a hydrocele that has developed and may require a hydrocelectomy. I'll let those interested look that up on the web (https://health.google.com/health/ref/Hydrocele).

We both keep plugging along looking for the end of this tunnel. Most days are just about getting through the day and are pretty uneventful. There are days that both of us express just packing up and running away. Tyler continues to try and deal with the medical bills coming in and whether they are correct or should be paid for. Still waiting for information about disability payments and insurance reimbursements. I've sold my car and we have re-financed Tyler's car to get the monthly payments lower.

The Univ. of Colorado Hospital is doing pretty well so far. The VAD coordinators are great and we are just trying to learn a new system of who to bug about what and when. In comparison to St. Luke's I think what I miss is the "built-in" staff of doctors. The cardiologists, neurologist, pain medicine doctor, surgeons, fellows, physical therapists, etc. But basically we just have to set up that group in Colorado and rely more on the VAD coordinators, who will guide us through this process.

We had a small glitch when Tyler's Fentanyl patch strength was increased from 12mcg to 100 mcg. A little to much to say the least. Made Tyler clammy and nauseous and made him vomit. We went back to one of the 12mcg patches and are getting a new script for just 25mcg. This is in hope that with the slightly higher Fentanyl dose, he can reduce the Vicadin tablets.

So, my hope that 2010 would be all good news isn't quite coming true. But we are still here, in our house, and with our pets. Hopefully the good news for 2010 will be a new heart so that Tyler doesn't have to carry around batteries, I remain cancer free, and no more surgeries for Robert (and just one more for Tyler).


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