December 31, 2019 New Medicine for Colitis

Yesterday after the call from Dr. Galati he said to send a text tomorrow (New Year’s Eve) in case he runs into a snag to be sure he gets going on Kevin’s medication. He went home last night and studied Kevin’s current list of medications to decide which one.

They got one called in named Asacol generic Mesalamine and it’s 1500 dollars for 30 days. Keith was at CVS and they worked up a plan to just fill 7 days worth. I texted Dr. G only for him to reply ugggh. So he has started those meds and we will wait. Now that our insurance United Health Care didn’t reach an agreement with HMH he also added we will cobble something together.  Our coordinators are our lifeline. I don’t want another coordinator! That’s who we would reach out to for information about this exact thing.

December 30, 2019 Pathology Results from Scope …

Keith said wait a week and text pretty much the same thing. Smiles. This time I waited a couple more minutes 😂

12:10

“Good afternoon Dr. Galati. This is Beth Troutman—Kevin’s mom. Checking in on possible pathology results from his colonoscopy on the 17th.”

Reply:

“Yes…checking

Beth…sorry for the delay. Just got the report now and spoke w the pathologist. I’ll call shortly.”

The phone call came after his day ended. Cannot tell you how much we love this doctor! I carried around my phone and paper for the ready. So glad of God’s timing! Kevin was actually finally with me. We were all home to listen. Basically, he said it is colitis for sure and leaning towards ulcerative colitis. He’s known all along it had to be colitis and wondered who missed this colitis on Kevin!? But even his last scope before transplant he thought where’s the colitis and never got it.

The second thing is a wait and see and a most likely stinking hopefully NOT. And it’s Host Verses Graft Disease. That’s a scary term for transplant patients. Aggressive. Rejection. Especially seen in bone marrow transplant patients of which Kevin is a liver transplant patient. BUT. Since a pathologist spotted what looks like that then dr g is sending it along to more eyes to see. If the meds he started this week for colitis work that’s a really good sign. So. We wait and see.

December 20, 2019 Text to Dr. Galati

Exact text sent to Dr G worded by mr few words Keith so as not to abuse my privilege(!) oh. He said text around noon. Literal me…

12:08

“Good afternoon Dr. Galati. This is Beth Troutman—Kevin’s mom. Checking in on possible pathology results from Tuesday’s colonoscopy.”

No news meant no news. Even though I like a response. I’m told I’m old and nothing said means nothing.

December 17, 2019 Colonoscopy 6:30 am 15th floor Baylor Clinic Something like International Endoscopy Center

•first yesterday’s prep day was awful started out not so bad but by the end of the night he could not drink much of the second stuff and pretty much vomited what he did sip. Yuck. Add a migraine and hunger and it’s a horrible terrible no good very bad day. Through in more horrible.

•Dr. Galati did the procedure and talked bedside to us afterward. He took 6 at least biopsies. He threw out there that he feels like it’s under the colitis umbrella. He said to text him Friday (see? approachable!) to remind him to look for pathology results. It’s Christmas week so Friday may be too early. There’s just a lot of funny stuff in these visits that make everything a little less stressful but Kevin already tells me I put too much detail so will skip it but if you ask me in person oh I will share! Lol We took him to a place off the Grand Parkway for breakfast called The Toasted Yolk.

December 2-9, 2019 Trying to call and schedule Kevin’s Colonoscopy with Dr. Galati through his private office

•it was finally time to get this scheduled. I encountered a sad thing. When I called his private office there was no Lexi Phoung Erin Samantha Araceli … this is gonna sound like we are all that and a bag of chips but no one knew Kevin. 😱 One gal actually told me we needed an office visit because we hadn’t been seen since 2016-17! I’m like well he’s a transplant patient and he is seen in the OPC by Galati and his coordinator. I said all of the below posts stuff. Galati wants him scoped. Tamieka wants him scoped. Only gettting it scheduled I finally had to play the mom card. I called weeks before he was coming home for break so we could get this process started. No matter what my screen saver says. Time is NOT on our side! Lol! I gave them one week plus to get back to me. Then made contact again. They said there isn’t an opening until February! I was like why didn’t you tell me that last week. This is just the scheduler I’m talking to. I know that’s a high turn over position. So. I dropped the card. I said look. I have Dr. Galati’s cell phone number. I can text him myself or like he said back when he saw Kevin last: call one of my girls. Call my office. Let’s get him scoped. He’s the most amazing approachable doctor! The scheduler sent me through to the next level and before the day was over Kevin had this appointment. I have no idea what it’s like from their side and maybe one day I will see it but for now I’m still recording things for the book we need to write about the other side of the door. It does sound rough but when we go pretty much low key until we need high maintenance then that’s the way it has to be. I just KNEW we could not postpone this any longer! Scope will be dec 17 at same place in medical center. On main. Across from where tiff had her girls. Yeah. Keith will love those directions!

November 16, 2019 Labs, Stupid Mail Order Pharm and it Appears HMH and United are in a Throw Down of a Lifetime

•Labs at University of Tennessee Knoxville LabCorp (great labs again!) Patient portal has all these organized. I hope it stays backed up for life!

•many many many emails back and forth to Tamieka over mail order antirejection medication refills. We usually get a call from their system reminding us to order. I go online and click refill. Love the online option especially since some encounters with the phone pharmacy techs have been … insane challenging infuriating (fill in the blank) This last time was such an ordeal. It takes all the life out of me to fight them and it just should not be so! It’s exhausting on our part when “they” don’t see what they should see to make the reorder happen. Woe is me when the script expires and we have to make contact for another refill. But I love his coordinator! She goes to battle with us! Gets put on hold and has complete idiots to deal with and she is an RN for HMH! Praise Praise Praise this time around we got a 90 day supply!!!! Now if I can train my body to not stop in it’s tracks every month before the 7th I’m good! That jolt to my system of: did we order the antirejection meds!!!??? Is a whopper! Lol

•our insurance and HMH are in contract negotiations. It’s pretty bad when I’m checking Cals snap chat story that there’s a story from one or the other of these two getting information out there to let patients and insured know to contact someone to let them know how we feel. All the social media outlets have random articles and arguments. I asked Tamieka about it and she thinks they will come to an agreement by the years end or if not transplant patients get an extension. Ok. For now.

9-6-17 to 9-6-19 Two Years Today!

Kevin is 2 years today! (Bailey was a year this past June) We are thankful for the donors and their families. We pray for them and think of them so often and even though we do not know them we cannot forget their great gift of life. Bailey never forgets. She does the same thing for each person in our family. For Cole it’s the blub blub of her finger over her lips; for Caleigh it’s “more more anna” which means get in there and play Frozen on that piano so she can dance and twirl in the living room! With Kevin she just walks up and stands or sits as soon as she sees him and lifts her shirt…preciously pointing to her scar. So he joins her. They are forever and ever Scar Buddies. And we are forever and ever thankful for the scars. Each time I see them or think of them I am so so thankful for the donor and family behind that scar.

• 
• Scar Buddies
• 

August 6, 2019 Kevin Headed Back From Canada Needs Labs or Possible Scope?

Contacted Tamieka on Kevin’s way back to Texas. Same stomach issues. She was off getting “hitched” as she put it! So happy for her!!! Anyway. She said:  “Let’s wait to see how labs look, because if Magnesium is too high, that could be the culprit. Just want to make sure we can adjust medications first to resolve these complaints. In the event that this is not an option, I would suggest the  scope to be on the safe side.” In a previous email she said to contact Dr. Galati’s Private office for scopes. His labs did look great! It’s such an amazing thing to study the numbers and she them in between the normal ranges. Thank you Lord for taking care of Kevin!

May 15, 2019 HMH (Houston Methodist Hospital) OPC (OutPatient Center) Clinic Visit with Dr. Galati

Clinic appointment with Dr. Galati and current coordinator rounding. (We missed Tameika this go round) Maybe Jamie (?). For the most part it was a quick visit. Kevin was loaded up to start his drive to Canada for the summer where he was to serve. The main problem was working out what to do with his continued “stomach issues” he wasn’t over with since his bout with food poisoning over in England.  Dr. Galati wanted to scope him but there wasn’t time. So they ended up having him leave a stool sample and were prepared to call in something along the way if he needed it. Turned out nothing was found so Kevin served an entire summer in North Bay Ontario. We invited ourselves to see him here too. This time we made most of the journey by Amtrak train! From San Antonio to Buffalo then by car the rest of the way. We ended up meeting his crew at Niagara Falls and after touring there followed them into North Bay. On his way back home at summer’s end he was able to catch a couple of baseball games checking off stadium visits on his journey back to Texas.  He still struggles with migraines and the same stomach issues. We’ve been in contact with his coordinator several times. Too much magnesium. Not enough magnesium. BRAT diet. All have been tried.

January 13, 2019 Email from Crown Hall for a place for Kevin to get labs

Dear Mrs Troutman, 

Thank you for your email. I believe Mark McElreath was going to be in touch with you regarding further details. 

I told him I would send you the details of the nearest medical centres to where he will be living. These are listed below. They will need Kevin’s records from the States which you have obtained. For Data Protection (which is heavily regulated here) Kevin would need to contact them personally or a professional on his behalf. 

We have spoken to an NHS nurse and she would be happy to help explain the National Health Service functionings if Kevin has questions about differences. 

Benjamin Galyen who lives on the Crown Hall property would be happy to help with arranging transportation with Kevin. 

Every blessing, 

Lareina Kiser 

The Spa Medical Practice

Droitwich Health Centre, Ombersley St, Droitwich Spa WR9 8RD

Phone Number:  01905 772389  

Worcester Royal Hospital 

Charles Hastings Way, Worcester WR5 1DD   Phone Number: 01905 763333

Tuesday Jan 8, 2019 The Semester Abroad in a Paragraph!

Kevin flies to England to study and serve for the Spring Semester. He was able to get labs over there a couple of times. Maybe three times total. We got results from ONE. He said they basically said we will let you know if there’s a problem. (!) He had about three rough weeks in all in the semester total. A couple of typical things and one horrible case of food poisoning. What I love is that we never knew until after the fact. That kid! 6 hours ahead time wise made for calculated conversations but he didn’t let us know everything during those calls. We learned our mail order pharmacy our insurance company uses for his anti rejection meds doesn’t mail the monthly medications overseas! They said they would mail them wherever he was. They lied. And I let them know. We had to mail one month to him. It was insanely expensive and stayed in customs for almost three weeks. We were about to tap Cole to head to England as courier when it finally was delivered. We didn’t send him with a semester supply because they said they mailed them! They sent us a three month supply so we hand carried them over Spring Break. We had a great time inviting ourselves to visit him and deliver meds! He had just finished the horrible week of being sick and I had to just keep telling myself that was all…he was really thin but who wouldn’t be after that. Poor kid. He is the toughest thing!

January 3, 2019 Follow up with Dr. Linda Le Cardiologist 8 am ultrasound 9:10 appt OPC 2nd floor fast after midnight & Dr. Escudier follow up 11:40 Green Park One

Follow up w ultrasound. All looks great. Now we can follow up in a year. Jan 2020 unless there are any problems.