January 29, 2014

Today was a clinic day for Dave and what a great day it was! (Besides the fact that these 2 Floridians woke up to a snow covered car).  Dave’s feeding tube has finally been removed.  All his blood work relating to the transplant came back looking good once again.  His triglycerides are still high but we are dealing with that issue separately.  Our BIG NEWS this week is Dave’s weekly clinic visits are no longer required as long as his blood work continues to show normal results. He will go in every two weeks now.   This is a huge milestone.  It also means we will be going home for a visit.  Mackenzie got the news this evening and she is very excited.

Gary is flying in tomorrow night with plans to drive our second car back to Florida on Sunday.  We needed two cars here while Kathy was in Durham with us.  Now the three of us will all be heading back to Florida together on Sunday. Dave will have his labs done while in Florida.  Dave’s team is arranging for test results to be sent to Duke the same day they are performed.  This is key to early detection of rejection.

Unless things change, we will plan on updating the blog on his bi-weekly clinic days.

Thanks for caring,

Linda and David

January 15, 2014

Dave and Aunt Jeanne 1/15/14

Dave and Aunt Jeanne 1/15/14

We had a visitor this week. Dave’s Aunt Jeanne, mine and Kathy’s sister, arrived on Friday from Tampa for a 5 day visit. She was pleasantly surprised at how good Dave is looking these days. She had a chance to join us at Monday’s weekly clinic appointment, which ended up an all day affair, and to take cover from an approaching tornado while we were walking around one of the nearby small towns. We do like to provide diverse entertainment when entertaining visitors!

Dave’s report continues to be good. Last Thursday, we met with Dr Guyton, the lipidologist. He is taking charge of Dave’s endocrine needs. He is the top in the country and by his own admission stated to date he has only ever met four patients with David’s genetic defect – Type 1 Hyperliperprotenemia. To put it in perspective, he is 65 years old and has been practicing medicine in his field a very long time. He was not surprised at the lack of knowledge by the transplant team but very disappointed that he had not been consulted earlier in Dave’s care to avoid the precarious situation he had been put in.

Prior to our arrival, he had apparently gathered his endo team and educated them on the unique aspects as well. For instance, while in the hospital, Dave’s top team member put him on both fish oil and tricor. Standard therapy to reduce triglycerides. Dr Guyton took him off stating “there is no medicine that will reduce triglycerides in a type 1 patient!” In fact the fish oil will increase his triglycerides. His tube feed was also also stopped, as it had fat in it. A new one has been found with zero fat. Long story short – by the next day he had educated the surgical team, the liver team and the dietary team on this rare genetic enzyme deficiency and there is a new appreciation for serious damage that was underway to his new pancreas. Dave’s diet, and the only management for type 1 Hyperlipoprotenemia, is low fat (<20 gms), high protein, low sugar, no fructose, and high carbs to gain weight.

Monday’s clinic report was pretty good. Dave’s weight has been holding steady at around 106 to 107lbs. His Triglycerides dropped 300 pts to 4100. They should be better next week with the diet changes. Dave’s Ostomy output was high compared to input, so to be cautious, he had a biopsy. Thus the all day event at the hospital Aunt Jeanne got to enjoy. His results yesterday showed no rejection – yea! The new pancreas is producing insulin and his liver enzymes are normal.

We are still on weekly visits. Hoping in the near future we will get that expanded out a bit and we can then maybe start getting home a bit more often.

As always, thanks for caring.

January 8, 2014

Dave 1/5/14

Dave 1/5/14

First and most important. Dave is doing fantastic! Sorry for the long quiet spell. I retired on 12/31 and had to turn in all my electronics, which here in NC meant just about everything, my laptop, iPad and iPhone. My means of communicating was severely limited. Long texts on a phone are tough. Finally, I received my new IPad Air today via Amazon (retirement gift), so I’m back in business. David is patiently getting me up and running. I am technologically challenged, for those that don’t know me. Sad considering what my husband does for a living – it does challenge his patience at times. Enough about me.

At last report, Dave and I were in the car headed to Florida. We arrived around noon on Tues, Christmas Eve day. Mackenzie was so happy to see her daddy and to take him home that evening with her to await the arrival of Santa. On the way to their house, Dave, Skye and Kenzie stopped to visit with Skye’s parents, Mike and Donna Hayslip, who hadn’t seen Dave in 7 months, since the night we left Mayo Clinic for Duke. Donna prepared a wonderful Christmas Eve dinner for them to celebrate Dave’s homecoming and to have their family Christmas. The 3 of them went home to wait for Santa. Santa did not miss Mackenzie.

Christmas Day they came back to Grandma’s house, where we were joined by Steve and Riley. It was a great day to have the family together after what seemed such a long time. Skye had to work, so Dave spent the rest of the visit at our house. Thursday was a quiet day, and Thursday night it was dinner and an IMAX movie for mom ,Gary, Dave and Steve. Mackenzie came back on Friday and spent the night wearing daddy out, then playing all day Saturday. It was tough to say goodbye. I had promised I would have Dave back in NC in time for his 8:00 a.m. Clinic appt on Monday so we were back in the car heading north early Sunday morning, not sure what the holiday traffic would be like. (Not bad)

Dave has had 2 clinic appointments since we returned. All good news. It seems the holiday visit is just what he needed! All his lab work showed good results. Dave has had good improvement in all categories. Except his triglycerides, but there is a better understanding of his genetic deficiency now, so the panic has subsided. He is now steadily gaining weight and is up to 106.5 lbs. Will he someday start the cycle of chronic pancreatitis over again? Maybe. Probably. God willing, not for years.

There is a target date of removing Dave’s feeding tube of 2/14. Maybe sooner if he continues to gain weight at this steady pace and continues several more weeks of such good looking blood lab results. I have included a recent picture – judge for yourself on how good he looks. Everyone at clinic was so impressed with his improvement.

As always, thanks for caring.

Linda and David

Dave & Mackenzie 12/26/13

Dave & Mackenzie 12/26/13

Dave, Skye & Kenzie 12/18/13

Dave, Skye & Kenzie 12/18/13

Mackenzie & Riley 12/25/13

Mackenzie & Riley 12/25/13