Time for an update and to wish a Happy 1st Anniversary to Dave! It was 1 year ago yesterday, September 9, 2013 that Dr Debra Sudan and her transplant team saved David’s life by transplanting into him a new liver, pancreas and small intestine. The national 1st year survival rate for adult small intestine transplant patients is 70% so Dave has reached a major milestone. He is an amazing fighter with a huge will to live and stay with his family. Everyone’s prayers and good wishes have been an important piece of this journey. On more than 1 occasion he thought about giving up over the past several years. I am thankful he has chosen to stay.
We have been home for 7 weeks now and Dave is doing good. His only complaint is still lack of energy. There have been a couple of bumps in the road but he has, as usual, dealt with them.
The first bump was the activation of the CMV Virus in his bloodstream and the surprise elevation of the EBV Virus(this has been active all along, but very low). The BK virus is no longer detected. The CMV Virus, if not knocked down quickly, is deadly to a solid organ transplant patient. Because Dave is still on weekly labs, the CMV was caught early, before he was symptomatic. The combination of Duke, Mayo and David’s family primary care physician, who is now also involved, worked flawlessly. Home healthcare was contacted to come to his home to re-access his port(been in his Chest now for 3 years) within 24 hours and got him started on a twice daily anti-virile infusion he self administered twice daily. We can now report that after 3 weeks, the virus is no longer detected. Crisis averted. He has stopped the IV infusions and taking the meds orally, daily to keep it at bay.
The 2nd bump occurred while Dave was actually back at Duke for his 6 week check up. His liver numbers had consistently been elevating (probably due to the virus) so to be on the safe side, his Dr felt it necessary to do a liver biopsy to make sure there was no sign of rejection. Good news is there was no rejection. The bad news is Dave’s body didn’t respond well to the procedure and he ended up in the hospital. Apparently instead of the normal 1 piece biopsy, they removed 3 pieces. The liver swelled, causing some complications. All turned out OK but what was to be a 3 day trip turned into 6. And………it was Gary who volunteered to run up there with him for the “quick” trip because I was sick with a fever and could not be near Dave. Gary said he felt like me out shopping for everything he did not bring – enough clothes, razor, underwear, lol! Gary’s description of the experience: “Dave really, really gets cranky when in pain. Hospital television channels are bad. Hospital room really, really small, food tolerable, information really slow in coming, days really really long!”
All in all, a good first 7 weeks. His next visit at Duke is November 5, unless something comes up and we get called back sooner. Dave is very much enjoying being home with Skye and Mackenzie and being a family. They have been to Sea World, a Rodeo, taken Mackenzie to start her first day of Pre-K, spent lots of time swimming, and done numerous other activities together as a family. Something Dave as not been able to do for several years.
As always, thanks for caring.
Dave and Linda
Dave firstname.lastname@example.org (904)327-1492
Linda email@example.com. (904)610-7352