Wednesday, January 8, 2014


First of all...Danny's 3rd biopsy was negative meaning still no sign of rejection. And, his white blood count on labs was back to normal. Yaaay!! One of the anti-rejection meds was a little high on bloodwork, which can apparently be toxic if it's too high. So, they decreased that dose a bit today. Just as we grew accustomed to everything being fluid with the LVAD, medications with a transplant patient, particularly in the beginning, are also quite fluid! He has labs again in the morning to see if that anti-rejection dose is correct now. Labs are tough now because they need to fill on average 6 vials now, but his veins "blow" after only a small amount of blood is drawn so the have to stick him over and over again. Before all of this heart stuff Danny's veins were fine and drawing blood wasn't a problem, but now it's like his poor veins shrink up and wiggle out of the way anytime a needle comes near!! Danny also has big bruises all up and down his arms. Most of them are from the IV's before, during, and after transplant, but some of them are new. I know he will be so excited when it doesn't hurt to touch his arms! 

Here's some irony. One of Danny's least favorite words is food...and now, because of the Prednisone and other meds, it's one of the main things he thinks about. He is always hungry! We have discovered that he really needs to eat a small meal with some of his meds or he will get sick. The thought of him vomiting this close to transplant makes me cringe!! Him thinking about food more than me is quite a change for us. I'm completely addicted to food. Thankfully, I don't suffer from any other forms of addiction...but my struggle with food is every but as real as a struggle with smoking or alcoholism. Food for me is emotional and physical. I turn to food for a variety of emotions and trying to eliminate sugar feels like what I would imagine detoxing being like. Anyway, because of the medicines, Danny is hungrier than I am and the terrible and completely selfish part of me thinks that's nice for a change! I think this is probably the first time he has ever felt consumed with hunger in his life and I think it will cause him to be more compassionate with my food battles in the future once he's out of this hungry stage. 

Danny's face is getting puffier. He doesn't like it at all but I think he's as handsome as ever. 
Facial puffiness timeline #1



We are going to write to the donor family tomorrow. Finding the words that best express how thankful and blessed we are in the midst of their sorrow will be tough, but I'm looking forward to trying! 

On January 1, many LVAD patients (along with many other Americans) lost their health insurance. The medical costs associated with an LVAD are staggering, not to mention the thought of being on a heart transplant list without insurance. I don't know how anyone could possibly pay for that. I'm not sure what Medicaid or Obamacare pays toward LVAD/transplant (if anything), but I know it's not as much as a reasonable private policy would pay. Danny and I gave his dressing change kits we had left over from when he still had the LVAD (about 2 months worth) to a woman who lost her insurance and she cried she was so appreciative. We are also donating his LVAD equipment to someone who won't be able to afford it anymore. We need to never forget to count every single blessing we have because there are people all around us who have so many more needs than we do. I take three medicines every month and the highest copay I've ever had to pay was $25.00. I refilled one the other day and it was more than $45.00. I thought geez...that's just one medicine and I have insurance! 


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