December 23, 2013

Dave was released from the hospital about 4:30 today. We got the okay to leave the state. Dave needs to be back at 8:00 a.m. on monday 12/30 for clinic.

Our car is packed and we decided to get a few hours drive time in this evening before anyone changes their minds. Dave is feeling good. His triglycerides are still high at 2100 and he will be on insulin 4 times daily while at home to offset this. He is also back on tube feeds and 20 grams max of fat, high protein per day diet. We promised to have labs drawn on thurs in Florida, the results to be sent same day back to his transplant team coordinator for monitoring. They will call us if he needs to make any changes in his meds. Should an emergency arise, which we do not anticipate, he will go to Mayo Clinic in Jacksonville.

Happy Holidays to everyone – will not post an update again until next week.

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December 22, 2013

Progress has been made today. Dave’s triglycerides dropped to 2500 after his tube feeds were stopped. Giving credibility to the theory the liquid food had too much fat and was offsetting the benefits of the insulin drip. Endo team wants one more day on the drip to aim for a number less than 1000. Of course, his weight has suffered and he is back down to 101, but we have found a high protein, 100% Whey, near zero fat product from GNC to mix with fruit for smoothies. These fills him up and provide needed nutrients that have been approved.

We need to wait and see what tomorrow brings. Car isn’t packed up yet but the gas tank is full – just in case…….! HAH.

December 21, 2013

Dave is still in room 2111 at Duke. Day #5 of the promised short stay for those that are counting. I’m so frustrated at this point I don’t know where to begin. Overall Dave is good. At last post, Dave was being hooked up with insulin drip to bring down his triglycerides. For the first 24 hours it worked great. They dropped to 6400. Yesterday though, they only down to 5500 and today they are still over 5000. Also, Dave tried solid food again. Baked fish and mashed potatoes. This did not settle well and nauseated him.

All this time Dave has continued with the tube feeds as well to maintain weight, which seems to be working. Between his reaction to the food, and the fact that his triglycerides are still so high, he is again NPO. Meaning he is off of everything but the insulin drip.

Here is the frustrating part. There are a lot of “teams” involved in Dave’s care. Unfortunately the one team that was never consulted was the “lipid” specialists. A sub specialty of endocrinology. The endo team on his case are diabetic specialists. In other words there are way too many sub specialties and you have to make certain you have the right specialist. Just having endocrinology involved wasn’t enough, apparently. The transplant team’s job is to fix all damaged organs, so we have both surgeons and organ specialists. But what we did not have, apparently, is anyone who really understood the rarity of David’s genetic defect to begin with.

Remember way back when the liver specialist said Dave’s new liver should produce the missing enzyme? Wrong! My requesting the insulin drip prompted a call to a team of lipid specialists. And guess what! The current top recognized lipid specialist is here at Duke. He took a brief look at Dave’s history and said if he has type 1 hyperliperprotenemia , which he does, the new liver still will not be able to produce. Thus all the lipid infused TPN and tube feeds being used to help Dave gain weight to this point are just piling on the triglycerides. His body still cannot break them down. So, the insulin drip going in while tube feed going in, was offsetting. The first 24 hrs he was on the insulin drip the tube feed was off which was why the big drop initially.

We are back to square 1. Dave is on insulin drip only. No solid food, no tube feeds. The nutrition team has been tasked with researching the possibility of TPN and/or liquid food that is fat free. No one seems to be aware of any. Dave is NPO until at least tomorrow and whatever nutrition he finally gets in, no matter what form, will be fat free. Now that he isn’t taking in any fat/lipids, the insulin drip should drop the triglycerides quickly for real this time.

We have no idea when Dave will get released from hospital and when or even if we will get on the road to Florida any time soon.

 

 

December 18, 2013

Things looking a bit brighter today as we knew they would!

A lot of hydration has perked Dave up considerably. The CT scan shows some inflammation in the tissue surrounding the pancreas. The pancreas itself is not inflamed. We caught it very early and avoided a major problem. Apparently there had also been an issue with some of his kidney function labs from the day before, (bun and creatin). Although this was attributed to his dehydration. Dave is where he needs to be right now, and hopefully it should be a short stay. We’ve heard that before!

Kudos to Dave’s brother, for reminding me last night of a relatively new therapy his doctors in Jacksonville used to quickly reduce his own triglycerides when suffering from pancreatitis recently. I spoke with the transplant team today at Duke and they wasted no time in getting ahold of endocrinology, asking about the 24 hour insulin drip. Within an hour they were in Dave’s room. They pulled info and decided it should work, and got the drip set up. I wish I had remembered last week! How frustrating. How refreshing though, that just because one group wasn’t familiar with treating high triglycerides this way, they didn’t shut down the idea.

Dave is back to tube feeds only, once again. He seems to be holding at 103 lbs. I, for one, don’t want to hear the word TPN for a very long time!

Thanks for staying interested in Dave’s journey – we appreciate it!

Linda

 

December 17, 203

Dave waiting in clinic today

Dave waiting in clinic today

 
A Picture is worth a thousand words. Dave is having a very bad day. He is struggling with abdominal pain in his upper left quadrant. He has no appetite at all. Despite fluids being flushed thru his feeding tube and 18 hours of liquid nourishment he is still severely dehydrated. He also has low Blood Pressure. As if that were not enough he also has extremely high triglycerides of 11,000. Dave’s team is very concerned he will develop pancreatitis, which could mean damage to his new pancreas. Not wanting to take any chances, he of course is being admitted to the hospital once again. Unfortunately no beds available at this time. We were able to avoid the germ laden ER, though. His transplant team met us in the clinic. His surgeon did a two minute assessment and said they were not taking any chances. There is clearly something wrong, but hopefully not pancreatitis. Maybe it’s something from the tube placement yesterday? That is my vote. Special arrangements were again made to accommodate Dave in the outpatient infusion center, where he is getting plenty of IV fluids while we wait for a bed. We’ve been here since 11:30.

 

I will update everyone with results tomorrow. Looks like home for the holidays is fast becoming a non issue. Oh well, there is always another week. Christmas can be celebrated on whatever days we choose to do so. He can still watch Kenzie’s reaction to Santa’s visit via Skype.

 

Dave could use some Christmas cheer and he does enjoy getting mail! Please don’t forget him. I know everyone is busy and the excitement of the transplant is over but this is actually the toughest time. Christmas cards are greatly appreciated!

 

Thanks,
Happy Holidays to Everyone!
Linda

 

 

 

 

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December 17, 2013

Dave and cousin Anthony before heading back to Chicago.

Dave and cousin Anthony before heading back to Chicago.

First, I want to let everyone know that I (Kathy) have returned home to my family, and the snow, in Chicago. Prior to leaving my home in a rush to get to David last May, with intentions of spending a week in Florida, I was in the middle of some major home renovations, training our new Great Dane puppy and preparing for back surgery.

I now have a renewed drive, outlook and sense of humor. I may even blog about it (new address to follow) because as any of you out there that really know me and my family, this promises to be an quite an experience.

From this point on, Linda will be sending the updates to me. I will continue to do the postings and maintain this site.
David and I (Linda)appreciate the 7 months Kathy spent with us and will miss her. We are now on our own.

Yesterday was clinic day. This didn’t go so well, once again. Saturday night, Dave’s feed tube clogged up. We could not get the flow going which meant 18 hours without his liquid nourishment. We had 3 bad results this morning at clinic. His weight was down to 103 again, all efforts to unclog the tube failed and worst of all his triglycerides skyrocketed to 11,000. Reason for all this tied to changes in the liquid food and still some TPN in his system, the Doctors think. He had some fluid retention from the TPN, which showed up in his ankles swelling. This is gone now so some of the weight loss again makes sense plus he usually runs liquid food for 18 hours which shows up in fluid retention on the scale. So 103-105 is probably pretty accurate. The new formula was very high in fat to try to increase his weight. This new richer formula coupled with the TPN, caused Dave’s triglycerides to elevate along with clogging his feeding tube. Which resulted in, you guessed it, another day in outpatient surgery. So our 8:00 a.m. clinic appointment ended at 5:00 p.m. Unbelievable!
They would not give us the ok to go home for Christmas. We need to go back Thursday a.m. for more labs before we get an answer. The team understands that Dave needs this visit home from a mental health perspective, but they don’t want to risk his physical health. David is in a depressed state as you might expect under the circumstances. I think we will get the ok, but it may be for just 3 or 4 days.

Meanwhile I am also winding down my career. I cannot believe I have just 2 weeks left.

 

 

December 12, 2013

Dave arrived back at the apartment today looking better than he has in a very long time. He weighed in around 110 pounds today. Give or take a pound or 2 depending on the time of day and which scale is being used. His biopsy results from Monday were also clear. Meaning, he showed no sign of rejection. The only little bump in the road is the TPN caused his triglycerides to elevate to a whopping 9400 (normal is 150).
A refresher on Dave’s history. High triglycerides starting at birth, began damaging his pancreas, which as we fast forward, has brought us to where we are now. So, it was no surprise when a team member arrived in his room today letting us know they stopped his TPN. For the record, high triglycerides can cause inflammation of the pancreas resulting in pancreatitis. They don’t want him to get pancreatitis and start this whole cycle over again.

Dave seems fine at this time. It was caught early and his team is taking steps to reduce the high triglycerides quickly via meds and diet. They still let him out today, but he has to go for labs tomorrow and then back again on Monday.

Dave did come home with his backpack and tube feeds running 18 hrs. And an increased in his daily fat intake to 40 grams a day.

If all goes well, the team says Linda will be able to take Dave home over Christmas for a few days. She is trying to get approval for a week, but they will be happy with whatever time the doctors feel Dave can safely be away from Duke. We will keep you all posted. Fingers crossed!