Monday, April 28, 2014

Getting used to medicines

It's been a long time again since I've blogged. I appreciate the people who ask about Danny from time to time because it reminds me that people are thinking, caring, and praying for us. I get so wrapped up in keeping things together that I forget about others I guess. 

I am so grateful and thankful to say that Danny still has not had ANY rejection. I have to keep reminding myself of that and be intentional about thanking the Lord because the medicinal side-effects are so difficult for Danny...and therefore me too.

  • intense burning all over his body from the inside
  • intense fire-ant bite like feelings all over
  • Intense itching everywhere
  • horrible vision, causing headaches and dizziness
  • confusion/concentration problems
  • mood swings, severe
  • surgical pain, controlled with pain is a 6/10 on pain scale (10 being worst pain possible)
  • cramping
  • weakness
  • shakes
  • excessive sweating during sleep
  • sleeplessness
  • exhaustion
  • depression

If you add all of those symptoms together, it makes for one hard day...for Danny and those around him who are trying to help him. 

The medical bills are just scary. He has had three open heart surgeries so far...

  • LVAD (mechanical heart pump) implanted
  • Heart transplant and LVAD removal
  • Repair of transplant surgical complications

Those three surgeries required months of hospitalization and that adds up quickly! After a transplant the doctors do biopsies routinely to check for rejection. Biopsies aren't fun because it's a tube going in through the carotid artery on the right side of the neck that is fed over and down to the heart. A small chunk of the heart is cut off and removed for the biopsy. They have always taken a few chunks with each biopsy...I guess to make sure they have a good sample. Biopsies aren't anything new, but now there is a blood test that can be done through blood work. It's called Bio Map (I think that's how it's spelled). Anyway, obviously it's great because for Danny it's just more blood that has to be drawn and no matter how someone hates having blood drawn, it's always going to be more pleasant than an actual biopsy. So far Danny has had three Bio Maps done, and each of the results has matched the traditional biopsy results. The plan was to discontinue doing the traditional ones and do only Bio Mapping in the future. Danny and I found out (after 3) that Blue Cross won't cover the Bio Mapping because it's still in an investigational stage. Ochsner sent documentation to Blue Cross to explain why it is medically suggested for Danny and all of the current statistics, but Ochsner stood by their original denial. Each Bio Map is extremely expensive, and unfortunately it's our bill. I think Danny is going to request to have traditional biopsies instead of the Bio Map since insurance won't cover it. 

He will soon be returning to work. I'm not sure how it will go because programming is such a detailed and technical thing, but returning to "normal" will be a good step. His work is so great and I know they will work with his shortcomings until he is weaned off some of the medicines with such terrible side-effects. He is supposed to wear a face mask anywhere away from home for a least a year after transplant, so I'm not sure how that will work. Wearing a face mask throughout the work day doesn't sound like fun to me! 

Prayer requests:

  • finances
  • medicine side-effects
  • encouragement
  • faith

Thanks for continuing to pray for us. We still have a long road ahead of us!!



  1. Thank you for posting! I think about and pray for y'all often, and I truly worry when there isn't an update. I hate to ask too often because I know that you have a lot on your plate and don't want to add to it. I know you must be exhausted and I wish there was something we could do to take some of this burden off of you, even if just for a l little while. In the mean time I will continue to pray.

  2. Hey. You guys don't know me. I just happened to stumble upon your site. Wow! Danny is such a trooper & so are you Tricia! 4 years ago I had a major cancer operation for a stomach cancer. It was 15 hrs. I'm sure Danny & I could share some war stories. Hey Danny -- You hang in there buddy! You are a true champ!!!!!

    Blessings from your Brother in Christ,
    George Landes