It’s official!  Dave is cleared to undergo his surgery to reverse his Iliostomy, Monday, June 2. He has been looking forward to this day for months, ready to get his plumbing back in working order. It’s time to see if his new, small intestine will work as designed and get rid of his bag. Remember, as part of his transplant surgery, Dave also had most of his colon removed and 80% of his stomach.

For those who have asked if he has reached the targeted 120 pounds, no, not even close. He hovers around 109 pounds on average. The important thing is, he has stayed steady. While no longer a diabetic, he has to restrict his sugar intake until the Iliostomy is reversed, as it affects the output. So he gets no calories there. He must also continue forever to follow his <20 grams of fat per day diet. His muscle mass has also been reduced, so consensus has finally been reached that 120 pounds was an unrealistic goal in the short term. Steady weight was more important. I think I finally got them to also understand that at the peak of health, his maternal grandfather was only 125 lbs at the same height, so Dave’s small stature is also genetic.

We are not sure of Dave’s surgery time yet. Dr Sudan is performing a living donor kidney transplant before working on Dave. Most likely, his will start early afternoon. She said to plan on 2-4 hrs. Dave’s team is all very excited for him as this is considered a major milestone for small intestine transplant recipients. I will be posting status on Facebook that day, as Kathy will have started her back surgery at 7:00 a.m. that morning and for obvious reasons won’t be blogging for a few days.

Dr Sudan again confirmed that if no more complications, we will be moving back home in mid to late July. I’m not going to jinx it and rent that moving van yet, but our hopes are steadily rising! Hannah, mommy is coming home, I promise.

Hannah, our German shepherd, is very mad at me. In the past when I have Skyped, she comes to the phone, flaps her ears up and down, wags her tail and licks the phone when she hears my voice and sees me. 2 weeks ago she walked to the phone when Gary called her over. I said her name, she turned her head and walked away. Would not return when he tried to call her. I was crushed. The cats, on the other hand, each came to the phone and meowed. I know, you are all thinking I have lost my mind. Those that know me well, aren’t surprised by any of this and are laughing, hopefully.

Moving on, for those not connected on Facebook, today is 1 year since Dave and I arrived here in NC. Unbelievable. What a journey.

As always, thanks for caring.

Dave and Linda

Dave (904)327-1492

Linda (904)610-7352


May 23, 2014

Good news continues to come our way. Dave’s labs all look good this week and surgery to reverse his Ostomy still on track for the scheduled date of Monday, June 2. Only 1 week left to get thru.

Next week is full of clinic appointments to get the final approval from Chief Surgeon, Debra Sudan. Dave has the standard pre-op diagnostics, plus a CT Scan and because of his pneumonia history, he is getting a breathing treatment of medication into his lungs at the infusion center as a preventative measure. Infectious decease will also evaluate him and sign off because of the pneumonia and virus history. Prayers and fingers crossed we get the go ahead. This should be his last major hurdle. Dave is expected to be in the hospital 5-10 days to make sure the new intestine really does work, and then approximately 30 days after that he will be turned back over to Mayo Clinic and Dr Michele Lewis in Jacksonville, Florida.

Other news………Dave’s Aunt Kathy is having back surgery. Also on Monday June 2. We wish her well. She has been in major pain for a very long time and is looking forward to hopefully being pain free.

Since Kathy does the blog posts, we needed to figure out how to get his (and hers) update posted on Monday. I will definitely post on Facebook that day so many of you will see the update there. For others, feel free to contact me via email. My address is listed at the bottom of this email.

Last but not least, and not wanting to be left out – I am having a root canal on Thursday. A redo of an old root canal. I didn’t even know that happened! Doesn’t quite measure up to what Dave and Kathy will be doing on June 2, but it was the best I could do! LOL

As always, thanks for caring.

Dave and Linda

Dave (904)327-1492
Linda (904)610-7352

May 7, 2014

We have a good report this week. Dave is feeling good. His labs support that fact, so he got the news he has been waiting for. The surgery to reverse his Ostomy (reattach the small intestine) has been scheduled. It will take place on June 2. We should be heading home approximately 30 days afterwards, if all goes well, as is expected.

Dave must remain infection free and out of the hospital or the clock resets and we start a 30 day infection free waiting period all over again.

For those that have asked about the status of the BK virus – it is still active. Infectious disease continues to monitor closely with transplant team. The most recent labs show a reduction in the BK virus but, Dave’s liver numbers have moved outside the acceptable range, indicating his anti-rejection meds must be increased. They had previously been lowered to push down the BK virus. The teams have settled on a range for the BK virus that should not be harmful to Dave. Avoiding rejection of the new organs is the priority. That said, constant monitoring via labs will continue to be part of Dave’s life for a long time to keep things in balance.

Having a top rated liver transplant center such as Mayo Clinic in Jacksonville is key to David being able to get back home. If future complications arise with the small intestine, they will be key to identifying the issue and urgency of getting him back to Duke and Dr Sudan.

Lastly, I am taking a much needed break! My sister, Jeanne, is coming to keep Dave company for a week while I go off to meet up with Gary for our 16th anniversary. I think we have seen each other 5 times in the last year. He has been an amazingly caring and supportive step dad to Dave thru all of this. The love, support and patience he has for me is a wonder. Especially during major meltdowns, few and far between as they have been, when I think I don’t have one more ounce of energy to deal with another piece of bad news, Dr, hospital or living so far from home.

Thanks, Jeanne for making this possible. We appreciate it!

As always, thanks for caring.

Linda and David 904-327-1492 904-610-7352