September 10, 2014

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.

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As always, thanks for caring.

Dave and Linda

Dave dlmyersinc@gmail.com (904)327-1492
Linda linda212@tds.net. (904)610-7352

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July 15, 2014

We made it! Dave and I are back home with our families. I know many of you also follow on Facebook so this message may be redundant, but for those not on FB a few pictures of the move are included below.

Steve and Riley arrived Tues.

Steve & Riley arrive

Steve & Riley arrive

We snuck in a little fun time on Wednesday before getting to the hard work by renting a boat and spending a few hours on Jordan Lake in Durham.

Lake Jordan

Lake Jordan

Dave free and clear of tubes etc.

Dave free and clear of tubes etc.

Gary arrived late Thursday as planned. By then we had pretty much everything packed up. It seems we accumulated a few things this past year. imageWhen we arrived Dave was in a hospital gown and I had a small overnight bag! Gary, knowing me well, wisely rented a large truck!image Hah! In all fairness, besides accumulating “stuff” we also accumulated furniture.image. imageSteve, having recently moved into a new house just happens to have a couple of empty rooms – family room and kitchen so his house will be first stop.imageimage

Because we have to have drama we did have a small twist but all ended well. Mackenzie got strep throat! We thought Dave’s homecoming might be pushed out a day or two, that he would have to stay with us. But the antibiotics did their job, Dr said Kenzie was no longer contagious – you can see from pix all worked out. Dave is home with his 2 girls.imageimage

Dave does need to be back at Duke on August 27 to see Dr Sudan. She was adamant about the need to return for follow up. He is also on weekly lab draws until further notice. His liver numbers keep moving inside and outside the normal range. We all would like these to stabilize as it makes us a bit anxious but do not really expect any issues.

I received confirmation that all records from Duke have been copied and sent to Dr Lewis at Mayo Clinic. While he is not being passed back to them, I think I mentioned previously, Duke and Mayo will work in tandem to keep Dave safe.imageimage

So……from here on out I will be posting updates when we have his follow up appts at Duke or if something unexpected pops up.

As always, thanks for caring.image

Dave and Linda

Dave dlmyersinc@gmail.com (904)327-1492
Linda linda212@tds.net. (904)610-7352

 

July 7, 2014

July 2 – Dave had his last appt with Dr Sudan before going home. She got called in to do a pediatric kidney transplant. Disappointing but we understood. That said, we did meet with the rest of his team. His most recent labs continue to look good but will continue to have labs run bi-weekly at home. He will continue to maintain a daily log of all vitals which includes his weight, blood pressure and temperature. Any significant change in vitals warrants a call to the team coordinator at Duke. We are told he will need to come back to see Dr Sudan in the long term annually for rest of his life. HOWEVER, in the short term, maybe 2 years, every 6-8 weeks. What? Huge surprise, we were not expecting that. We thought Dave was being turned over to Mayo Clinic for ongoing care. Instead they will be working in tandem with them. Duke will get copies of everything. If he runs into trouble he will go to them and they will call Duke. A call is being set up with Dr Sudan for Monday so she can explain all this better.

July 7 – Our packing is almost done! Steve and Riley will arrive tomorrow. Gary arrives on Thursday. I’ll hand in apartment keys on Friday and the truck pulls out with Gary and Steve behind the wheel. WE will arrive home Saturday around noon. We are in good spirits. Mackenzie is excited because she can now count the days until daddy is home with her fingers on one hand.

11:00 a.m.- Conference call with Dr Sudan to answer all our questions and get him released to Mayo Clinics care. She wants him back here in 1 month! You have got to be kidding. And probably every month for the next 6-12 months. This is our first time hearing this. We had long conversations about the why’s. I asked about risks and longevity. We discussed national statistic outcomes of small intestine transplants in adults vs Dr Sudan’s personal statistcs (she has 100% survival rate at both 1 year and 5 year marks). National statistics are 70% 1st year and 50%, of the 70 %, at 5 year mark). Bottom line, her detailed attention to her patients is why they are all still alive. Dave will be back as often as she requires. We did sort of agree to a compromise. She suggested she might be comfortable with Dr Lewis, Chief of GI or Dr Ngyuen, chief liver transplant surgeon at Mayo doing an assessment every other month and getting on a conference call.

In the meantime, we will be back in Durham some time in August. As for transferring his care over to Mayo? Never 100%. The small intestine is very quick to become compromised if and when a patient picks up other illnesses. Unless a hospital has a small bowel specialist, which Mayo does not, and most do not, Duke will remain his primary care facility. Mayo, though, will play the critical role of doing immediate assessments, administer protocols as directed by Duke or arrange for transfer to Duke if it becomes necessary.
I asked her thoughts regarding the fact that Dave is immunosuppressed and Kenzie goes to daycare and will be starting preschool. Constant washing hands, both David and Kenzie. In those months when influenza are most prevalent if her school is reporting high illness or absence rates she should be kept home to minimize her picking it up and bringing it home. I guess we know when I might be babysitting this winter.

This past Saturday we said goodbye to special friend, Nila Nagey, we found here in Durham. The 3 of us went to see Jersey Boys and had a great dinner afterwards. Looks like it may not be goodbye after all!

Dave and Nila

Dave and Nila

While things thankfully are winding down here in Durham, NC, we will continue to post updates as events occur. The move will be a big event so expect to see pictures of leaving and homecoming. From then on I will be posting status of check ups on monthly or bi monthly basis at Duke as they occur. Hopefully I will not have a need to post news of any interim complications.

Also, Dave’s Aunt Kathy’s first goal, now that she is able to sit at a computer again, is to complete the cookbook she and Chantel started. All the proceeds will go to help with Dave’s on going medical needs. His prescription costs alone will be huge.

Thank you to all those that have already sent recipes. Anyone who would still like to submit recipes, please send them to kathyquatraro@comcast.net. She needs more Appetizers, Drinks, Gravy and Sauces or Side Dishes. Although any will be appreciated. Kathy is looking for any homemade recipies as apposed to ones out of other cookbooks. Your favorite dish your mom or grandma made.

When it is completed, Kathy will post the information here for ordering your copies.
As always, thanks for caring.

Dave and Linda

Dave dlmyersinc@gmail.com (904)327-1492
Linda linda212@tds.net (904)610-7352

June 21, 2014

Dave is doing fantastic and we have the official word to make our plans to move back home to Florida. His wound from the Ilieostomy reversal is still healing, and he gets tired quickly, but other than that, he is in better health than he has been in years. Even the BK virus is almost completely gone. It is at a low level of 450, down from the highest point of 33,000. That said, weekly blood draws are in his future for some time to come. It is the single most important way to track any early sign of organ rejection, or any other medical issue that might occur with Dave right now.

Dave’s doctor at Mayo Clinic has been contacted, and I am told, was genuinely very excited to get the call that he was ready to come home. She quickly agreed to accept him back as her patient (she is top GI and pancreas specialist there) and is working to pull the liver transplant team together that will follow Dave.

Speaking of teams, meet DAVE’s CLINIC TEAM.
Dr. Rege, Abdominal Transplant Fellow – she has been his primary week to week Dr and also participated in his surgery. Julie, RN – Team Coordinator and our life line. She is the link that holds literally everything together. Kitzsa – Nurse Practitioner

Dave's team

Dave’s team

The move home is happening the weekend of 7/11. Steve and Riley are flying in on 7/8 to help pack up. Gary arriving on 7/10. He says he and Steve will start loading that evening, finish the morning of 7/11, after taking apart beds and getting us out of town before any Drs change their minds!

As of now, Dave’s last appt with Dr Sudan, Chief Surgeon, is 7/2. We aren’t expecting any surprises but we did leave ourselves a week. It is also our understanding, Dave will return to Duke University
Hospital, annually for a check up for the rest of his life.

Dave’s Aunt Kathy saw her back surgeon post op yesterday. 2.5 weeks ago she had 6 screws, 2 rods, 3 spacers (in between disks)and cadaver bone inserted at her L4, L5, and L6 vertebrae. She is up and walking about a mile a day along with performing most household chores that doesn’t include bending or lifting. She even went to see her son’s performance last night. Although, like Dave, she too gets tired quickly.

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Kathy’s Dr. had this to say. “You are a walking miracle! Not because of the surgery I performed, but because of the recovery you’ve made.”

Our family is proof that prayer produces miracles!

We will keep you all updated.

As always, thanks for caring.

Dave and Linda

Dave dlmyersinc@gmail.com (904)327-1492
Linda linda212@tds.net. (904)610-7352

June 10, 2014

Dave’s surgery last Monday, went very well, he encountered no surprises. The small intestine is working and he was released from the hospital on Friday. He is very uncomfortable and spends most of his time sleeping. The discomfort is from the terrible gas pains and bloating associated with this particular surgery. It can last 2 weeks or longer. He has no appetite and, as expected, has lost considerable weight. He is down to 103 lbs. Dave has an open surgical site. It is best for this to heal from inside out. My job daily is to clean the site and pack with a saline soaked piece of gauze. His daily routine consists of logging daily weight, temp, BP every morning. We then take a walk, a little more each day to help get things moving. He then goes back to sleeping most of the day away. In the old days, this was all done in the hospital as patients were kept a lot longer. The only thing he eats is Cream of Wheat (not grits, sorry all you southerners), his choice, once a day. Nothing else appeals or interests him. I have tried luring him with some favorites. I hate to see him so thin! He is also drinking a nutrition supplement once a day. Getting fluids into him is a challenge. He knows the effect of dehydration on him. I have done a lot of reading on this surgery/procedure. There is a high rate of patients returning to hospital due to all sorts of things, dehydration (affected by his absorption rate which is unknown at this time) and infection being most common. Hoping Dave won’t be among the patients that do. So far, so good.

Dave’s Aunt Kathy, is also home after her back surgery. She is still in a lot of pain and, like Dave, spends most of her time in bed resting. After all, it is just 1 week ago yesterday since both of their surgeries.

As of now Dave and I are still on track to move home next month. Seeing how the next two weeks go will be important to reaching our goal!

As always, thanks for caring!

Dave and Linda

Dave: dlmyersinc@gmail.com 904-327-1492
Linda: linda212@tds.net 904-610-7352

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 dlmyersinc@gmail.com (904)327-1492

Linda linda212@tds.net. (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 dlmyersinc@gmail.com (904)327-1492
Linda linda212@tds.net. (904)610-7352