Dec. 19, 2018 RESCHEDULED follow up with Dr. Galati OPC 10:00 am
Dec. 1, 2018 Labs Knoxville at LabCorp University of Tennessee Medical Center
Nov. 21, 2018 Follow Up with Dr. Galati OPC 10 am CANCELLED
This was cancelled and rescheduled for 12/19/18 with them in OPC. We need to check to see if they need labs before this visit.
Nov. 17, 2018 Labs Knoxville at LabCorp University of Tennessee Medical Center
Kevin said today’s lab lady was extremely slow!
Nov. 3, 2018 Labs Knoxville at LabCorp University of Tennessee Medical Center
He borrowed a friend’s car to get to these labs since his truck battery decided to die. He was thinking about last labs and the tac level and there is a chance with the pill box that all meds are in am and pm and he’s suppose to take all meds except the tac and zortress before labs so he said maybe one of those tiny tac pills did get taken accidentally which made that number so high last week. Kevin is back to baseline from these labs! Katie said labs every two weeks for this month then back to every month. (We need to find the name of the lab place in England from our insurance company…)
October 27, 2018 Labs Knoxville at LabCorp University of Tennessee Medical Center
10/31 Katie emailed: Beth I am concern with Kevin’s labs. He did not take his Prograf prior to labs on Saturday correct? His number has jumped up to 10.9 from 5.8 without a dose change. If not I am not sure why his numbers have been all over the place since going to school. Maybe he has added something to his diet. Or maybe the timing of the medications, or his lab times on Saturday. Can you have him call me if he gets some time so we can review. He will need to hold tonight’s dose and then decrease back down to 3mg twice daily. Continue with weekly labs. My desk number is 713-441-9819.
Kevin was able to reach her and I think he said the same thing skip the next tac dose but the med might have been 3 am and 3.5 pm but will confirm with Kevin…
October 20, 2018 Labs Knoxville at LabCorp University of Tennessee Medical Center
10/23 Katie emailed: I am still waiting on the Prograf and Everolimus levels but I wanted to let you know the liver numbers are coming down still, which is exactly what we want. I will be in touch once the last 2 levels come in.
10/24 Katie emailed:
Everything is looking good the Prograf is a good level. However the Zortress is still a little low considering the recent spike. Please increase Zortress to 2.5mg in the morning and evening. Let me know if you have any questions.
October 13, 2018 Labs Knoxbille at LabCorp University of Tennessee Medical Center
10/17 Katie called me and said the lab didn’t run the TAC level. Inconceivable since that is pretty much the reason for labs. And it was on the order Kevin printed and carried in with him! I spoke with Kevin and he said this place even though it’s at the University of Tennessee Medical Center LabCorp here isn’t as advanced as the one we went to back in the day in Tomball, Texas! He said they hand write the tests on the labels…hand write. I told him to triple check the order with them and don’t leave that office until he knows the tests he’s there for are ordered.
October 6, 2018 Labs Knoxville at LabCorp University of Tennessee Medical Center
10/11 Katie replied to labs:
I went over Kevin’s labs and a few of his enzymes’ are up. His Prograf level dropped drastically, most likely this is the culprit. I am going to increase his Prograf to 3mg in the morning and 4 mg in the evening and also go up on the Everolimus. Please increase the night dose of Everolimus to 2.5mg . We will need labs weekly for a bit to make sure they are coming down.
Kevin can you go this Saturday for me? I won’t see the increase in the Zortress but I will in the Prograf. Please also plan on labs probably the following 2 Saturdays maybe only one.
September 1, 2018 First Labs Scheduled in Knoxville at LabCorp University of Tennessee Medical Center
Katie was out of office from 8/22 to 9/10 when she returned she sent this: I see that his alkaline phos is slightly elevated but it is not a level for cause for concern. It can be elevated for a lot of reasons, we will just keep an eye on it. If it continues to rise then we may make some interventions. His Zortress is just slightly low. We run it 3-6 after a year out. It being a little low could be why the phos is up. I do not feel comfortable adjusting medications using labs that are over 2 weeks old so I think we should just wait for the next labs.
Tameika responded for her that his liver function tests were withing his baseline range and Tac is 6.6 and Everolimus is 2.8
Kevin’s had headaches and missed class from them about 2 or 3 times
August 13, 2018 Registration and PCP in Powell Visit
Registration went great! We also went to meet with his new PCP who is in Powel and was very understanding and thorough. He didn’t even have him do labs since he just had huge ones last week so Katie faxed them over to Dr. Brakebill’s office. He gave us each his card and said call with any concerns. We found a hole in the wall pizza place for lunch then it was time to say goodbye…that is when a couple of tears streamed down. But he will do fine and really we are all just so happy for Kevin!
August 9-10, 2018 Leave for Crown!
It’s dorm move in time! And I’m HAPPY for Kevin!!! I told a friend I did cry after seeing Caleigh hug Kevin good by this morning but only a tiny bit because I’m trying to be H. T. tough! She replied: you will never be that tough! lol! Kevin is just ready! It is just an amazing fun thing to be in this plane today. Once we got to the Big House Friday Dr. Evans who helped tremendously when Kevin was falling apart here back in spring of 2016 came straight to us and shook our hands and said he KNEW this day would come and he’s prayed for this day for Kevin! We got this same reaction from Pastor Sexton and anyone we ran into that knew us from Pastor Pope and from Kevin’s short time here before. Such a blessing!
August 8, 2018 Last Pentamodine Treatment West Pavilion Tower 11th floor
Kevin did these every month since he was hospitalized last December having such a low white count. Instead of taking Bactrim everyday they went this route. It was outpatient and very hard to find the first time but once we found it we could almost get back to it every month! One of those park at the OPC and dog leg your way to Smith Tower then go up the to 3rd floor and walk up a weird hidden ramp type bridge to the 4th floor of West Tower and take the elevator to the 11th floor! It was a quick outpatient visit each month. The respiratory therapist would set him up in the “tent” and I would read a book in the waiting room just outside.
Almost every single time we are near Main 7 Kevin says want to go say Hi to Main 7…so we hop over and usually we get who we get. Over the year we have gotten to visit several times and every time we see someone new who remembers Kevin from “his time spent on this floor!” They usually have a fit and cannot get over how good he looks! He is lectured by the nurses more than a mom would especially knowing he’s returning to Crown. They are like: WASH YOUR HANDS! Eat right! Stay at this weight! They love Kevin! They also tell him always come back and say hi:) And when there is a chance they want him to hop in the rooms to encourage patients waiting for a transplant. Kevin had this when we were waiting and it truly was an encouragement seeing someone on the other side of it!
Earlier this morning Kevin saw his new PCP Dr. Lee at Capstone Family Clinic. No more Dr. Pope:( He kept him through the transplant and until he turned 21. She did a follow up from an ear infection/rip he was seen by her a week or so ago. All things are healed up and clear! This was wonderful news too.
August 2, 2018 Yearly Clinic Visit
One of the highlights of this visit was in the waiting room before getting called back. Kevin leaned over and asked had I emailed Jane (pretransplant coordinator) to let her know we were on the floor. I hadn’t but did it right that second and in no time she replied “I’m on my way!” We got to catch up with her! She is just the best and really did so much not only to get us to New Orleans in an expedited way once we decided to be on that path but the entire year and a half of hospital stays and in between stays she was the voice on the other end of the phone encouraging us and teaching us so much. She lectured him too: wash your hands! We will always keep in touch with her and she wants a picture of Kevin in front of his dorm.
In clinic we saw Katie our newly trained Post Transplant coordinator. So thankful for the couple of pretransplant coordinators who stepped in to fill Debbie’s shoes until they could train one. We saw the NP we saw in the hospital during the “antibiotic only appendicitis” and it was good to catch her up on Kevin. She said so we don’t need to meet to decide when to take it out like she mentioned during the hospital stay back then. They gave us copies of the ultrasounds, x-rays, and bone density scans. Everything was “unremarkable” which is a good word to hear!
Labs can now be done every month!!!!! We found a lab in Knoxville that is open on Saturdays so Kevin won’t have to miss class. We also have a PCP there and found a CVS. They were happy to see Kevin and so glad he was getting to return to college. Katie already made his follow up appointment with her and Dr. Galati in the OPC for the Wednesday before Thanksgiving. So he is now officially turned over from the surgeons to the hepatologist.
A fun thing he got to do after this visit was head to the airport with Cole to fly to Vegas and see the Sargents! So happy that he got a redo on a vacation and on top of that some fun brother time before heading to college.
July 31, 2018 Follow up with Dr. Escudier oncology
Follow up from pathology report and in general for keeping an eye on Kevin closely due to immune suppression as well as his autoimmune disorders pretransplant. She evaluated him. His spleen measured smaller to her from her notes from previous exam. She questioned him and wants to see him in 6 months. She will look at all the scans from yesterday and the labs.
She has a nephew who when he was 12 had a liver transplant. He’s 40 now and about to have a child graduate from high school. She told us before about him but today I asked what at age 12 caused his need for a transplant. She said he was born with biliary atresia… they told them back in the day it may not last long. They didn’t expect it to last 12 years she said but it did. I told her about Bailey…how amazing!
We also heard from Katie in the portal about yesterday’s 11 vials of blood drawn: she said labs look good see us Thursday.
July 30, 2018 Yearly Scans labs and ultrasound
9 am Labs 11 vials 9:30 Bone density scan 10:00 Abdomen Complete Ultrasound 10:30 Abdominal Doppler Ultrasound 11:30 Chest X-Ray
They call this the yearly scans and it’s a tiny bit early for since he leaves for college this is when they said do it!
July 26, 2018 Kevin sees new PCP Dr. Lee at Capstone
Kevin has had two days of ear pain so we are getting him in. He is now needing a new PCP for home and Powell. Dr. Pope only sees them through 21…bummer. We just missed it. Anyway we got the newest doctor who just started this week and we liked her. She did say he had a rip in his left ear drum with fluid build up. She put him on antibiotics. Also no going underwater for about 6 weeks until it is completely healed and she said to wear an earplug in the shower to which Kevin told me later…yeah I’m not doing that. And can he just quit popping up something randomly normal for the summer!
July 16-22 Vacation to the Ozarks and Kevin overloaded on Mag!
We made the trip to the Ozarks stopping in Eureka Springs to see The Great Passion Play and hide away in a cabin. Kevin ended up having a reaction to an increased dose of magnesium he was put on at last Thursday’s clinic visit. (they dc cellcept so now only on 2 antirejection meds: Prograff (Tac) and Zortress (Everolimus) Who knew that would cause a not so fun vacation for him. I kept thinking maybe the antirejection meds changing needed to be balanced out but then found a forum and could read random strangers experience…I googled LT with upset stomach and found lots of comments on one forum about the culprit is magnesium! Love transparent strangers telling all! Sometimes it can be helpful! Once we figured out the cause of the upset stomach we held the magnesium then was able to pick up a slow release mag. We also went to Branson at stayed at a cabin there. We saw Samson which was amazing but the Shepherd of the Hills play we were scheduled to see was cancelled as we were walking out the door because of unexpected weather. (this was the night and time of the tragic duckboat sinking in Branson…so very sad for all those families involved. Keeping them in our thoughts and prayers) We were able to sneak into Shreveport Bossier area for one day on the way home to see family and get our Johnny’s pizza fix!
June 24-30, 2018 Kevin Chaperoned Teen Camp at Indian Creek plus saw Noah’s Ark Exhibit at the Creations Science Museum
Kevin got to go along to this camp with Caleigh and our church teens to serve as a counselor. He was so excited to do so. I was excited the appendix was out in time for him to do so! He also turned 21 at camp doing what he loves to do!
Kevin appendectomy June 14-16 details
That’s right…I said appendectomy! He is that rare recurrence. He was hospitalized for this just a week before but they opted for antibiotics to treat him. I wish it would have worked but am somewhat relieved that it’s now DONE and DONE. And in true Kevin fashion he waited for this recurrence for late at night. Like midnight late! We called the on call coordinator just to tell them we were headed down and that helps let the ER know they know. Below is lazy me just pasting my updates to Keith. We were soooo tired. Painfully TIRED! (Bailey was transplanted on June 12 so we were B1 tunneling to them too!)
Text updates to Keith:
Thursday late night to ER
12:41 am early Friday morning
Got in ER. Charge nurse was notified we were coming by on call coordinator. So she got right to him. Put him in exam room 10. Grabbed a Dr. on way in. (He looks like Jonathan Pope) Dr. Boshkey. He examines him and said he’s clinically presenting with appendicitis. He’s gonna call Dr. Saharia before doing a CT scan cause he’s 20 and wants to minimize radiation exposure. So. Labs are being drawn now.
Dr B came in and said he spoke to Dr. Lunsford the attending for Saharia. They want a CT scan w contrast to check for perforation… he went ahead and has admitted him upstairs in a room but not until after the CT scan. *we never got in said room…stayed all night in ER until surgery…
1:23 am he’s at a 6 for pain
Finished the contrast
It was nasty
He’s probably gonna ask for pain meds
(Let me know what they see)
1:55 am he got morphine for pain. Number at a 7
So. Glad. We. Came.
2:30 am they took him back for CT. I was asleep sitting up and she went to get me a recliner. *praising Him for the ER nurse who took care of this mama too
From Keith: Text if you hear anything… I have sound turned up, so I am going to get a nap
(How is Kev?)
We are still in ER. Fell asleep. He’s sleeping. We are waiting on a room upstairs. I’m in a recliner.
He’s having surgery in about two hours
Nurse stopped by. Next is anesthesia then they take him back
The surgeon Dr. Lunsford was great! She actually was able to perform it laparoscopically which was a huge praise! He went in late Thursday night. Surgery early afternoon Friday and he was released the next day on Saturday!
Kevin admitted to HMH for appendicitis Bailey is Day 2 of Transplant These TWO! And what can I say:Shiny Cap!
June 14, 2018 Follow Up with Dr. Le from the Ultrasound CANCELLED
Cancelled and rescheduled because now Kevin is having surgery! Appendectomy…he just wants to one up Bailey in that scar department!
June 12, 2018 Bailey Transplant Surgery and Kevin Hepatic Ultrasound
Crazy. I remember getting to the waiting room for Bailey so early in the morning and of all things Kevin and I had to step out to go to one of his appointment down the street. He was having a image of his hepatic stent. First time follow up with Dr. Le who the NOLA doctor recommended for us to see to save a trip to New Orleans. Sweet Bailey. Getting her precious gift of life!
The Approach to Appendicitis In Kevin: Antibiotic is the new Appendectomy! Who knew!?! No. One. Ever! (May 30-June 7, 2018 Details below)
Wednesday May 30, 2018
Kevin presented with pain and nausea in his right side. He said it came on about the time he was hanging door flyers for VBS during outreach but it wasn’t too bad. He powered though the rest of the day and evening attending church and driving himself home. He thought maybe if he had a bowel movement it might help but came downstairs just doubled over! It was awful. It was 10:30 pm. We left his good pain meds and nausea meds in Vegas over spring break and hadn’t had them replaced yet. So I called the on call coordinator. He was wonderful. Most pharmacy’s near us that use to be 24 hour now close at midnight. Thankfully he was able to get it to one near us just in time otherwise I would have been driving far away for it. So we got him his nausea meds but the night was rough! He kept waking me just like pre-transplant days. And we had no pain meds except the one Dr. Galati said never take that New Orleans had him on. But at 1 in the morning he got that! I’m writing this in hindsight but sure wish we just would have gone straight to the Kirby/59 ER. In my mind I thought it was a reaction to his anti Rejection meds. He’s had one episode of that before when they added back cellcept at a high dosage. We found out two days later it was actually appendicitis so below will be the play by play of that hospital stay. Sometimes I text updated. Sometimes I emailed. Occasionally I started a note. Combining all that for my medical memory now because this has tuned out to be quite the ordeal! They wanted to approach it conservatively especially since he’s still under a year of transplant. It was almost too much for me at some points because we had never heard of this approach. We just assumed he would get in. Get that thing out. Go home.
Thursday May 31, 2018
Clinic with Tamieka and Dr. Saharia.
Kevin can DC cellcept. He started Zortress May 15 and they wanted to wait to pull cellcept to make sure the other two were in therapeutic range.
He showed/pointed to where he was feeling the flank right side pain. We described the horrible previous night. He added a UA to his labs. Wanted him to add stool softener as well. Dr. Saharia ordered a CT scan for tomorrow because he wanted Kevin to have a bowel movement before imaging. They were thinking possible kidney stone. They sent tramadol for pain to the Scurlock tower walgreens. If zofran doesn’t help with the nausea they can send Reglan. They said a heating pad can be used for help with constipation. Later I read not to use it if appendicitis was suspected! Oh well…since they actually thought it could be a kidney stone they called in that stuff to help with that.
The elevator ride from the 26th floor of the Out Patient Center to the lobby was awful! Kevin was not doing well. He needed to take his morning meds. And he needed to eat before doing so. But he didn’t think he could make himself do either. Kevin couldn’t walk after appt. and was getting more nauseous. I tried to get a wheel chair, and the valet guy wouldn’t let me. So then I looked up and there was the old man driving the courtesy golf cart along the bridge between all the towers down there. I asked the man if he could help get Kevin to the Marriott because Kev was just doubled over asleepish in the lobby. By the way. Get the Marriott app! I’ve had it. Looked up room availability and pricing. I was able to tell her when she said they could offer a medical discount that my Marriott reward rate was cheaper than that. Praise the Lord they let us in early! It was 10 am. Kevin needed a place to rest. It actually was another horrible day. He couldn’t even lift his right leg into the bed. I had to do it for him. Looking back his white count was the highest on this day. Tramadol didn’t help.
Tiffany was so concerned about possible bowel obstruction she slipped over to listen to them using Bailey’s stethoscope. Bailey at this point is in Texas Children’s hospital waiting for a liver. Admitted April 12.
Sent this as a prayer today request for Kevin to church:
Please be in prayer for Kevin. He experienced pain and nausea late last night. The surgeon at his routine transplant clinic visit today suspects a possible kidney stone. He will have a CT scan tomorrow. Praying for comfort and His healing mercy for Kevin.
Friday June 1, 2018
We stayed the night at the Marriott and checked out and went straight to the CT scan. It was a 2:30 appointment but we got there early. So glad because they took him back early too! We got a call from Tamieka his coordinator at 2:40 saying the scan shows he has appendicitis and give her 30-45 minutes to direct admit him to Methodist. And also. Don’t eat or drink anything.
Sent this to the prayer chain:
Update and continued prayer for Kevin. He has appendicitis. They are admitting him. Please pray for relief from pain and nausea now that they have the reason. I sent this to Kevin as he went back in the CT scan “Praying He REVEALS what He already knows is wrong so they can see it!” Love how He answered that prayer! Hate that he has this.
Admission Lobby around 4 and Pastor Pope found us to pray with us before Kevin was admitted in case it was a quick surgery. He was on his way south of town to speak at a graduation. He also had to hunt down Bailey she went with Tiffany to the lobby to meet a friend for coffee. I told pastor it was a praying in the lobby kind of day!
In Dunn 411 after 5:30 or so
They haven’t said much. We’ve been the ones telling them everything. #Shift.Change.Admission.
They nurse hung the IV meds. Zosyn antibiotic. Kevin doesn’t have an IV yet. The respiratory therapist came w ultrasound to get “blood gases.” We are like. Ok. We have no idea even to this day what they ran that for. But the day shift nurse stepped away so they could do that so his IV never got placed until later. It was so close to shift changing so who could blame them!
Meanwhile I googled “how do you get appendicitis.” Learned that the heating pad the dr ordered yesterday to help with pain and possible bowel movement could cause an inflamed appendix to rupture. Yikes!
Nicole was our night shift nurse. She seemed tired when she came in. First impression. The IV was a drama too. She first tried to place it on his wrist. She was leaving to get the scissors to cut off his newly placed hospital ID bracelet when I got the “look” from Kevin. So when she got back in I said please don’t put the IV there. Kevin said he’s had them there before and they hurt. Plus it’s just in a weird place. I pointed to the forearm where he’s had them before. Then after a while I saw she was trying to put it in the bend of the elbow! Kevin for sure glanced over at me. At which time I hopped into action for the one and only job I’ve ever been given at this time and that’s IV placement advocate! She looked and said she couldn’t put it there because the veins are too short and it would blow or something like that. So she never cut the wrist band off and placed the IV there all the while it was in the way and she bloodied it. So she had to cut it off and he went about a day without the ever important ID bracelet to scan She made us anxious. But I kept thinking of all the new nurses I know and decided to just go easy on her! It could be Olivia.
Saturday June 2, 2018
They have IV antibiotics hanging. No machine. No beep. It just hangs to infuse. I guess that’s a thing. But they never disconnected it all night. I could be getting Bailey’s heplock incident mixed in here but I’m thinking when the medicine is done you cap the IV. So it made me nervous just seeing it hanging there.
Text to Ruth and maybe others if anyone was asking at his time!:
“I feel like I am about to hyperventilate. Kevin said I sounded ticked to the nurse. Well. They didn’t have his current anti reject meds correct. At 9 am. Even though last night less than 12 hours ago they did. No one reconciled the meds like we have done for all 20 hospital stays. I have my list. Ready. So this morning’s nurse felt my panic I know. (She had Kev in dec) and asked if anyone reconciled them with us. I told her no. Last night’s nurse said the doctor does that. 😡 I also pointed out to her the hanging IV antibiotic bag and told her I’ve been asking all my nurse contacts why it’s hung this way. I did not tell her You said they are all just being lazy. Lynsey (morning shift nurse) said they had 10 admissions last night! My comment in my head is. Oh. Well. Your a hospital. Deal with it. Isn’t that what you do. If you have a thousand beds there’s a possibility you will get a thousand patients.
But she said that about all the admissions while DISCONNECTING and flushing his IV 😊 So I kept my thoughts to myself.
I told her I was a little panicked about his appendicitis. He presented Wednesday. They were misguided at clinic for two days thinking it was a stone. She tried to call a dr to figure out why they changed prograff to .5 when it’s 3.5 two times a day. I honestly think they don’t know how to look at the screens. But “they” only sent point 5 prograff. (These are Antirejection meds in a liver floor you don’t just change dosages) She hopped out again and back in and said. Good thing. The Liver surgeon and NP are about to come in. And maybe they held off anti rejects for a reason. So I’m fine if they tell me the reason. He’s just so new to the new added anti reject med. And Thursday they dc one of them.
You get my text rant. Kevin already said I was mean. I’m not meaning to be. I’m nervous. Haven’t seen a single dr. I probably googled too much about liver patients and appendicitis! All the things I know not to do 😂😂😂”
11:00 the nurse brought the current and correct amount of anti rejection medication! He missed a dose on Thursday morning because he was so nauseous and in pain. We told the coordinators cause that’s what you have to do. So to completely miss another does just made me crazy. I kept telling them we have his medications. Can we just please give them. They said no. Praise praise they got this straight.
Surgeon for transplant just came in w NP. Dr. Mobley and Natalie. But I had to tell the nurse that we hadn’t seen a dr yet. She said they were “about to come in” at 9. It’s noon. I’m telling you I was in panic because all I ever knew was in appendicitis the appendix comes out! Anytime I asked the nurses to check the surgery schedule they would and say classic nurse response: there are no orders.
So much to take in after from Dr. Mobley transplant surgeon with Natalie transplant NP liver team
They are going old school. Not really considering rushing it out. They will re-evaluate tomorrow. If he’s still tender they will probably remove. So he stays NPO. She said data shows now they shouldn’t do the removal but treat w antibiotics. I was like I feel like he’s a ticking time bomb. We left clinic Thursday and had to grab the golf cart man to get us to the Marriott. So she was aware of when he presented. She seemed laid back. I told her he goes back to college in 10 weeks not that she can control any of this but after two years of liver stuff I would hate for him to be set back because of appendicitis. She said they don’t even remove it if it ruptured. They drain and treat w antibiotics. They are for sure not worried about perforation either because then they would drain and he’s already on antibiotics. I told her about Debbie my sis in law she is going this route. Her doc in Louisiana said of the 6 people he’s treated slowly they have all needed an appendectomy. She feels like a time bomb too.
I also told her we are hearing everyone’s stories of appendicitis. And they all had them removed.
***me. And now it’s different. So…great. We get to be guinea pigs. I’m not that much more comforted but Kevin is resting and I don’t want to hype on him. But great day. I mean I don’t do change. If this is what “they” do then ok. But it’s contrary to anything anyone I know knows. But. What do I know. And apparently what does anyone I know know😂
Praying praying praying for wisdom and great clarity for the decisions that this team of doctors will make for Kevin. Great quote I read this am in Mathew Henry commentary “That which we take to be a dark cloud, is to God clear as crystal, through which he looks upon all the inhabitants of the earth.” To distract myself from this I am rereading Ezekiel😂🤭🤔 because I can’t understand appendicitis or that book! But was truly blessed by the explanation of the first few chapters… and I’m determined to understand it! I got nothing but time either 😊
8:00 pm Tiffany sent what Bailey’s liver doctors said. Dr. Sonny Harpavat and Dr. Goss said get it out. Of course prefacing with they haven’t seen Kevin nor his scans.
6:30 am text to Tiff and CALL to Keith:::
Just reported the nurse we’ve had for the last two nights. I’m just DONE with her. She could not program the IV pole. She pressed and pressed for 30 minutes. I sat up and said seems like something is wrong. She was all Jamaican, no, it does this sometimes. It sometimes gives a problem. So then I said maybe we need to get someone in here to help. She said she would. Headed to, then it started beeping again. So she came back and pressed and beeped. I sat up. Mouthed to Kevin that I was done. Grabbed my phone and glasses to see the board so she went and got someone. Another regular nurse. I changed clothes. Then went in the hall looking for the charge nurse. I told her that I don’t know what it is but I don’t think she knows what she’s doing. I said we’ve had her two nights and if she comes back a third night we CANNOT have her. I asked how long she’s been here. I said we’ve had soooooo many nurses from pre transplant to now especially on main 7 and never have we had something like this. (I should have mentioned first night IV placement saga but didn’t) I came down stairs for coffee and to take deep breaths. I know she must have been in her patients room down beside us because after our PCA woke us at 5 am — the IV pole down from us was incessant. Which everyone on our hall must have been thinking about our room!
Silence the sucker!
All I ask is for a nurse with confidence, courtesy, and common sense!
I know it could be funny. But not at 5 am! The first night I was all it could be Olivia. I’ll be nice. She couldn’t even scan the medicines in. Ever. It was insane the amount of time each pill label thingie took her. First impression was she was tired coming on Friday at 7pm! She just seemed tired. Sluggish. Lazy? And she never talked! Like tell us! Say I don’t know why this machine is being so dumb. Apologize. She was all internal. Wrong messages being sent! I kept thinking she doesn’t know what she’s doing. Kevin told me later that after she drew labs she put the bandaid just randomly on his arm. NOT even where she drew labs!:0
Dr. B on Transplant surgery team
One of the transplant surgeons came in. He said more information but similar to what everyone else has been saying. He is looking at the CT scan in about an hour and with liver transplant patients they just want to be careful. His liver is settling back down according to the labs. Some of them were elevated. Today is more settling. If CT shows an abscess they place a drain to remove all of that. If it shows it’s responding better they let him sit for a while. Sometimes even taking it out at a later date. (? That was new to me)
I’m so jumbled up with all the information. But he did seem to explain more details. Should have recorded him. Didn’t know him or his sidekick. So at first I thought it might be the surgeon who takes out appendixes coming for consent! Cause I’m still on that boat!
I asked will they do surgery today? He said probably not. But keep him NPO until after seeing scan. He may be able to drink some things. If it’s emergency surgery he would have to be spiking a fever etc. so we are not there yet.
Encouragement to myself!
“thou shalt cover thy face, that thou see not the ground:” Ez12:6 I know it’s totally taken out of context and even the middle of this verse but… it’s where I feel we are. We are trusting Him with our faces covered and not even looking where we step. I have been in and out of Ezekiel. I thought why not sit during hospital time and read it slowly also checking chapter by chapter commentaries. So that’s where I was…
This was an issue going back and forth in my head. I wasn’t completely mental but told myself look: Kevin has eyes everywhere on him. So reach out to them. It’s not like I’m telling on the Dunn 4th floor staff. I’m just getting opinions of the people who know Kevin. So I sent all his coordinators an email explaining Kevin’s current situation.
I have heard back from Nancy the NOLA (New Orleans) coordinator. She is passing info along. I also heard back from Tamieka the coordinator who admitted him. (Houston post transplant coordinator)
She emailed this:
“Just think with everything else he has going on with his elevated liver enzymes, the last thing they want to do is take him back to the OR. Also, I know that everyone is just trying to be helpful in giving you their stories with appendicitis, but if there is one thing I’ve learned in transplant is that Everyone has a unique & different experience….whether it be in recovery or to the meds or etc. Let’s just focus on Kevin & how he responds to the current treatment of IV antibiotics. Hopefully he won’t need, if so, we will cross that bridge when we get there. Such a blessing to hear about Bailey’s exception points. I am still praying for your little princess.
Thank you so much for the updates, don’t hesitate to email or call if you need any. Ttyl”
Ok. Agnes our Day shift nurse came in and I asked who were those people just in. Dr. B was like the team resident/fellow and sidekick was Kim the NP. She asked her about Kevin and they told her to call Dr. Saharia. He said the scan looks like it’s improving:) So he can be on a regular post transplant diet and they are taking it conservatively. Things happenin kind of quickly today…praise God!
11:00 Bummer of all bummers the nurse just hopped in and said she misunderstood the order and said he’s on a liquid diet. And tried to make it sound exciting like he can drink all the juice he wants! I’ve never seen Kevin so bummed. He doesn’t want to go through this again, and he’s not happy about all liquid😂 He’s asleep…and I’m trying not to cry and cry.
New Orleans Nancy replied three times. Once with Dr Tyson (Nola version of galati) is on vacation. Next with Dr Sonnier (actually did Kevin’s Transplant) said it’s hard to really know without seeing him or the scans. He said transfer could be an option. Then 15 minutes later, All the doctor’s think the appendix should come out…
So. There’s that.
For days I’ve told people that I feel like a firefly trapped in a mason jar. All flying around and trying to be His light all the while smacking into all sides of that clear jar trying to MAKE my own way out. My kids hate it when I speak in analogies. But it paints the picture!
Absolutely putting this case before Him! To operate or not to operate! Who to trust! I don’t even want to make the decision!
Kelly H sent me all the versions of Job 5:8 and it is what we have been doing! Perfect timing.
“But if I were you, I would appeal to God; I would lay my causes before Him.” NIV
“I would seek unto God, and unto God would I commit my cause:” Job 5:8 KJV
“”As for me, I would seek God, and to God would I commit my cause,” Job 5:8 ESV
“”If I were you, I would go to God and present my case to him.” Job 5:8 NLT
“”But as for me, I would seek God, And I would place my cause before God;”
Job 5:8 NASB
Met Dr. Saharia in the hall. I went for ice. 8:30 am. And came back from 5 doors down with the cleaning lady cart blocking the door and the surgeon in the hall. So he spoke with me holding two tiny complimentary cups of ice. He asked about his pain and nausea levels. I told him he walked around the unit once then needed to stop. He is concerned with Kevin’s normal transplant meds. His creatinine was elevated. He is needing to change his antibiotics. Possibly dosage levels.
He is truly thinking and so many things are on the, my words, his don’t do surgery list. One is the Antirejection med Zortress that Kevin switched over to on May 15. Last Thursday cellcept was discontinued. (I actually thought he was dealing with a reaction to that because he has before. This time completely different area for pain) It hinders healing. It’s one of the reasons they don’t start it right after transplant but give time to heal. Another is because of Kevin’s history with auto immune issues. Several things there to take into account. (Fissures? I’m telling you we were in the hall.) Another reason is an increase risk in damaging the cecum where the appendix is attached. It’s best done at first presentation. He said Kevin was having symptoms already when he came in. It sounded like it just wouldn’t be good for Kevin to go in. Also he said his white count is better. It’s improving. Along with the CT scan showing the appendicitis is improving from Friday’s scan to today’s scan is another plus that the antibiotic treatment working and no need to perform the surgery.
Today after speaking with him after he came in and evaluated Kevin he said he thinks he’s doing better. He pressed and checked. I point blank asked him: so are we still considering surgery at this point and he said no. I asked if it were his kid in the bed what would he do: he said, treat with antibiotics. He said appendicitis can be treated with antibiotics. Kevin is actually responding to this treatment now. And I have to say, like I told Kevin for today, I have a tiny bit of comfort and peace about that but what I don’t have peace about is something we both know they cannot guarantee and that is recurrence. The manager last night gave me two research articles on antibiotics vs surgery, and it’s interesting, but “at the end of the day” and I quote researcher Dr. David R. Flum: “It remains to be determined whether benefits of potentially avoiding an operation with the antibiotics first approach are outweighed by the burden to the patient related to future appendicitis episodes, more days of antibiotic therapy, lingering symptoms, and uncertainties that may affect quality of life.” That last phrase should be all caps. (He used a similar phrase in the paper earlier, “anxiety about future episodes of abdominal pain”)
The key take away from reading the papers to me was this phrase: all the studies excluded patients with compromised immune function. Kevin is compromised. And the entire research once that guy summed it up said IT REMAINS TO BE SEEN! Aka : got no answers.
We have been praying. One verse I sent out earlier was in Ezekiels and repetitious but we are still there. I know it may seem out of context too but still so fitting for us now. Basically blind faith…”thou shalt cover thy face, that thou see not the ground:” Ez12:6 We are trusting Him with our faces covered and not even looking where we step.
I have that tiny peace because Dr. Saharia is the eyes on Kevin now. I trust his thought process. He knows transplant patients. He knows immune compromised patients. His patients all are. And on top of that he knows Kevin who has underlying autoimmune issues which led him to transplant. I told a friend who called while I was writing this update that today at 9:41am on Tuesday I have a smidge of comfort and peace. A great friend sent this verse from Job 5:8 “I would seek unto God, and unto God would I commit my cause:” and followed up later with trust your gut and your heart.
•Oral Doxycycline when they dc vancomycin yesterday. Creatinine was creeping up so the pulled it.
11:45 Samantha came in from Dr. Galati’s office! She found us because Kevin popped up on one of her lists she checks. Not often but she saw it last night. She said they would be rounding later tonight. After 5…
6:30 pm Dr. Galati and Samantha came in! It was so so so good to see Dr. Galati. I’m telling you it was an answer to prayer having someone whose known Kevin from the beginning and before transplant. He examined him thoroughly. I joked with him about searching his websites for articles or research about liver transplant patients with appendicitis and I couldn’t find one. He said that’s because there are none! He would say my first thought is get it out but then he started thinking and thinking and said I don’t know. He is calling Dr. Saharia tonight. He said together they would come up with a plan. He definitely agreed that the anti-rejection medication Kevin is on everolimus would need to be switched to cellcept. What they need to determine is how long before that medication is out of his system. How long should they let the appendix cool off/settle down. We said we want what we know you cannot guarantee and that is recurrence. And if there’s a recurrence we need a plan. He totally agreed. He said he would be back to talk tomorrow.
Tuesday June 6, 2018 9 month transplant anniversary!
7:30 Dr. Galati woke us up! (Nurse Rhey said later she pointed to our room and said let them sleep to everyone trying to hop in before them😇)
He had a long conversation with Dr. Saharia last night. Dr. G has actually never had one of his patients have appendicitis. Other hepatologists on this floor have. He has zero experience with it. So he listened to Dr. S. And he quoted the research and Dr. G was surprised that the chance of recurrence is 5-10% also the guideline for taking it out after it settles down is very involved. No great details but you just could tell it was complicated. They were glad he didn’t get it out at some random emergency room because of the anti rejection med he takes Zortress (everolimus) would have totally hindered healing. Dr. G said the final words were once he gets over this take it out. But he would leave it to Dr. S to define when he’s “over it!” He also wants him to add miralax today for a while to be sure he’s cleaned out. He’s still tender and he said cleaning it all out can help with that.
I had 4 of his books. I bought one for each of my kids. So he said last night he would be back today to sign them and he did! He brought his pen and signed away! He asked what stood out to me in the book. And i said right off the bat when i was reading it I even hollered this out loud to my household that he watched movies of surgeries when he was 5 years old! He went into great detail about these movies and how even when he would show them to the kids on the street! Just so funny! I also reminded him how very blown away we were with the 2 g sodium 40 g fiber diet and told him Ithought his office sent us a bad cut and paste!
8:10 Dr. S said the removing of the appendix later is still an option. But he hates to do that if it’s not infected. Plan for the next time IF there’s a next time is one day of antibiotic remove it the next day. Also he said sometimes taking it out when it’s inflamed it gets complicated because it’s hard to even find it. One time he had to abort the surgery on a patient because he couldn’t find it from the inflammation and didn’t want to cut too much. Treated w antibiotics. They have been worried about his kidney function because his creatinine has been high. But Dr. S said it’s trending down.
I will say I was dreaming Kevin needed a kidney transplant when Dr. Galati woke us up!
Also. Saharia says he can go home tomorrow!
May 15, 2018 From Tamieka after labs on 5/14/18
She said no need to come to clinic this Thursday but after up and down and up and down for the last 6 weeks it seems and with starting a new medication I said I would like for someone to lay eyes on Kevin. Especially since he’s starting a new medication. So we are keeping the clinic. We will see whoever!
“Hi Mrs. Troutman-
Spoke with Dr. Ghobrial today about Kevin’s labs on yesterday. He is pleased with the findings thus far. His levels are trending down appropriately. I was told to cancel his clinic appointment for Thursday and recheck labs only. He wants to continue to monitor him before electing to do any procedures. Believe it or not, he wants to try Zortress (Everolimus) for him. I reminded him of our previous conversation when you were told the medication was contraindicated for his diagnosis, to which both he & the Transplant Pharmacist had no knowledge of. I was told there was no recent literature or statistical data that they were aware of to support that claim.
Long story short, we will Initiate Zortress & recheck labs on Thursday. I know that you already have the medication, so please have him take 1mg (2tabs) twice a day, starting with his night dose. We will recheck labs on Thursday, to include Zortress level. If it is at a therapeutic range we will STOP the Cellcept. But he will not need to come to clinic.
I know that is A LOT to take in, so email me with any questions or concerns. I will schedule his appointment for labs now.”
May 14, 2018
This lab needed to be redrawn. I asked what was it for. And got this explanation from Tamieka:
The IKNOW Viracor is a serology that helps us determine his sensitivities too his immunosuppressive therapy. It helps us determine if the medications are adequately suppressing the cells that influence rejection or not.
May 9, 2018
Tamieka called. She said she read up on Kevin’s donor because his BILI is elevated. I think 1.4 from .7 she didn’t know about all Tamara knows from the abscess and sore throat and cough from Monday. At first she said Dr. Ghobrial wanted an Ercp. Then I filled her in on the permanent stent. Gave her Nancy’s number at Ochsner to get questions from. She was asking did we do high risk blood panels. I told her I’m not where I can see my notes. I was driving to tx ch. Then Dr. Gohbrial actually called her while she was on the phone with me. He wanted her in his office. They spoke of Kevin and then sent this in an email.
“Just spoke with Dr. Ghobrial about everything & he agreed to wait til Monday [5/14/18] to see how his labs trend & he wants to see him in clinic on next week.”
I had pulled over between parking garages because I couldn’t believe all i was hearing. Just last week his labs were fine.
May 7, 2018
From Tamara after Kevin saw Dr. Pope about an abscess spot on his thigh.
“I saw Dr. Saharia and told him all the *scenario and he believes we need to decrease Cellcept to 500mg twice a day until next lab draw on Monday. He agrees that the infections are probably what is causing the increase in LFTs.” Dr. Pope put Kevin on Bactrim to cover this. They were fine with that choice.
*”Scenario” mentioned above: Kevin was having a sore throat and cough along with the random spot/abscess on his thigh. So we just went in. Nothing to worry about on the throat and cough. Just safe OTC for that. He drained the abscess. Cultured it.
May 3, 2018 Email to Tamara
“Tamieka reached out yesterday and needed to update his flow chart. She had just a few questions like dates of prednisone increase etc. She wanted labs next week to check his Alk Phos. She’s not too concerned about it but wanted to do that.
So she scheduled one for Monday. I haven’t checked the portal but that is what her intentions were. She said Dr. Ghobrial likes top facts from the flow chart and she would be ready for him on Tuesday when she saw Dr. Ghobrial. (I’m sure I’m not spelling that correctly!)
And above all she knows you are getting his labs and didn’t want to step on your toes. We appreciate all the eyes on Kevin. We made his dorm deposit today.”
May 2, 2018
Tamieka conversation for 30 minutes.
She said all his labs look great except alk phos and it was up from 120 to like 161 and Dr. Ghobrial didn’t even want to be bothered by it unless it was in the 500’s. She mentioned so much. I had questions that she answered. She and Tamara are keeping an eye on Kevin especially since we lost Debbie. So it can get confusing. But Tamieka is a coordinator and Tamara is stepping in as one but works transplant recovery. Sometimes they have an overlap in information and I’m figuring out they don’t cc one another so I probably should. She did mention Kevin has two of the most difficult things preteansplant to treat post transplant. He won’t be the normal off most meds by a year but it won’t be too long before he is. She said I could call in Tuesday or Wednesday’s to go over labs with her if I wanted to. He is back getting labs every week. They email the changes for his medication and I try to copy it over here. It is a lot to keep up with!
April 5, 2017 Could Maybe be Looking at a possible Mild rejection (Kevin will be 7 months post transplant tomorrow!)
|And…who knew I did write last clinic’s update! Been carrying around the notes to do it sometime and looked and it’s already written!|
Labs and clinic day:
While Bailey is boasting a zero BILI dodging a possible procedure last week, Kevin is maybe starting to have a mild “rejection.” Dr. Saharia mentioned that word today at the routine lab and clinic visit at the Out Patient Center in the medical center. His LFTs (liver function tests) have been creeping slowly back up and today’s labs—they were doubled. So, there was discussion back and forth, but they want Kevin to increase all three agents he’s on: prograff from 2.5 mg twice a day to 3 mg twice a day and cellcept from 750 mg twice a day to 1000 mg twice a day and prednisone from 5 mg once a day to 40 mg once a day. (Steroid will decrease starting Monday after labs if they are lower) Just normal anti rejection medication gives him a migraine about once a week. Increasing meds will most likely add to that. Praying it doesn’t! The surgeon Dr. Saharia said he will just have to take the headaches and he’s glad he has effective migraine meds.
Since Saharia mentioned the word rejection he said not that this is happening but the lfts are slowly trending up. So labs every Monday. Clinic in 2 weeks or sooner if things don’t trend down.
We saw Tameka today but Tamara emailed us and said not to leave the 26th floor until she saw us. We got called back super early! And we had Bailey. We were prepared to wait for hours!
From Tamara: (for my records)
“I spoke with Saharia and he agrees we should increase Cellcept first and then the Prograf. So increase cellcept to 1000mg twice a day and we will see labs on Monday.”
And in no time she sent this:
“Ok don’t kill me, but I was not looking at this mornign’s labs. His labs from today have double so unfortunately we do need to increase prograf. Ughh, tell him Im sorry but increase to 3mg twice a day. Also Im going to call in prednisone for him to CVs on Spring Cypress. Have him take 40 mg everyday starting tomorrow. We will reduce on Monday if labs come down. This will be a good test to see if the prograf is indeed the culprit.
My apologies again,
Tamara Merriwether MSN, RN, CCTC”
We had a fun day with Bailey all day too! Even took her to the zoo. So we got in late tonight.
Dr. Linda Le cardiologist schedule appt
Dr. Susan Escudier schedule a follow up based on pathology report and Dr. Carter Davis NOLA advise.
We have a contact to help with insurance questions at the 26th floor. She gave me a pink sticky note with her contact info. We need to send heart cath mess to her and check if optim is being billed correctly. We should owe nothing because transplant is covers 100%
April 1, 2018 Easter!
Kevin was awake all night. He had the “vomit virus:0” He needed nausea meds several times and vomited with horrible painful nausea. He said the nausea hurt. He was miserable. But he made it through the entire day without an episode and did not need hospitalization for hydration! Tamara responded quickly for him to hold cellcept and prograff for a couple of days and she said to be careful because this virus was exremely contagious.
March 8, 2018
Clinic and labs
It’s been a terrible. Horrible. No. Good. Very. Bad. Day! Kevin had the worst night. We had clinic and labs already planned but he was in pain and having horrible nausea all night so he said he wasn’t going! I’m like oh your going! We have to. With spring break plans around the corner not to mention a 6 month old liver that could be in rejection we just had to go. He said he’d rather go to the ER than sit in the clinic. I don’t get that. That’s crazy talk! Finally at 5 am the nausea meds worked. He got a little rest before having to head down. He was still in right side pain and tired. We didn’t get to see the new coordinator and for a couple of hours we thought we were coordinator less again but it was a mix up. They are all still trying to cover for Debbie. We saw Jamie and she had a surgeon Dr. Saharia come in. We know him! He was SURE the culprit was adjusting to the increased dose of his cellcept. The highest dose they want an autoimmune patient on is 1500 mg twice a day. We had been doing only 1500 mg a day until a night and a half ago. Then they said all should be well as long as the labs look good. The labs we found out late afternoon looked good. Tamara said they were a little elevated but nothing to worry about. She will remain our coordinator. She actually works recovery but said she could handle Kevin. Whew!
I had HUGE phone issues and ended up without a phone all day which added to the terrible awful. And I have been in the iTunes hole for too long all day and night thinking I almost have it only to start all over again so many times. Somehow I even encrypted myself out of my fresh back up! Then after hours and almost completely done my stupid old iPhone that kept having a black screen decided to pop up a message that said hold this up to the new phone to synchronize it! I’m telling you I could have thrown it at the wall! It is a lesson on patience and I know so many people struggling with real other issues beside Kevin that I just plugged along. Sucked Keith in part of the journey to recover the phone! Cole got a break even though we could have used his hac- king skills on that encrypting thing! We say it every time! We need to pay more attention to this stuff!
Anyway, earlier Kevin and I both went straight mentally wise to the only thing we knew to do with pain and nausea. Lots of praying! Pain meds and nausea meds and I’m sure I have my lip chewed off. I was wishing I could get the word out but this time God just used me and the few who got through!
I also know how happy I’ve been all week thinking about and preparing a lesson to start back teaching Sunday school. And it dawned on me that every time I get ready to sit in that chair someone lately goes in the hospital! I just knew we were going to be admitted. Those symptoms don’t have many other options. But today they did! Cellcept! Who knew!?! Poor Kevin. He will know how much his body can tolerate it for sure and we know it does not tolerate 1500 mg twice a day. He is to rest. Drink plenty. Stop cellcept for three days. Start back gradual and increase. Labs again Monday the 19th. And I mentioned our spring break plans to her: Vegas! She laughed! Just where a liver needs to be! I said oh no! We are straight up Baptist. No gambling. No drinking! We are in it for the shows and restaurants from the cooking shows we watched for two years in the hospital! And day trips! When Kevin heard me mention we had until 3 to cancel our hotel today without being charged he said he could sit in any room! So that helped us have peace to keep our plans.
Kevin has been getting much needed rest all day. After being doubled over with nausea all night I am just letting him sleep and eat the BRAT diet. Only we also threw in a baked potato!
Praising God we are home and my iPhone is restored on this new phone!
Feb 28. 2018
Tamara called. Our new coordinator.
He should be on three “agents” for anti rejection. Prograff, Cellcept, and Presnisone. Three because he’s autoimmune. His ALT is elevated but she said not too much. It’s 74. Tac is 3.8 from 4.3. I told her we aren’t on cellcept. Dr. Saharia stopped that in the hospital. (In December!) Debbie (last coordinator currently on extended leave) said start zortress. And we have it. 6 boxes of it and Tamara said he will never be on that. Ok. Anyway. She will email later after talking to me and hearing from Dr. Saharia if he wants him back on Cellcept. Alk phosphates were 170 she said was fine. I told her about the issues we’ve had and forwarded her the thread. I told her one thing we need changed is his transplant date. We’ve told everyone and it’s still in as when he went in to the hospital in dec for low counts as transplant date. I told her not 12-4-17 but 9-6-17! She did a gasp! And sent an email as we were talking to get that corrected! Yes! We already love her! She also said he isn’t scheduled for another clinic visit because he’s on every two months now but she said let’s get him in next week just to lay eyes on him. This makes me so happy. I told her he is returning to college in 5 months so that gives them time to level things out. I also mentioned his horrible migraines. This week he had three straight. It’s bad when he calls me to come massage his head in the night:(
We also left church early because he was hot and nauseous. It turned out fine. He needed to sit still and eat. Whew! I never like those two symptoms together!!!
She emailed this:
Just spoke to Dr. Saharia and yes he needs to restart Cellcept. Start him at 1500 mg or 3 tabs twice a day. He is to have labs and clinic on Thursday 3/8 to see how is he doing. Hold his prograf dose tonight to see if it helps his migraine.
Let me know that you got this. Soon.
Tamara Merriwether RN, MSN, CCRN
Post-Transplant Liver Coordinator
JC Walters Transplant Center
Houston Methodist Hospital
6565 Fannin Ste. 1201
Houston, TX 77030
Feb 23, 2018
Discovered Debbie went on an extended leave. Thank you to Rolita who is our neighborhood Liver transplant buddy! She messaged me and asked if I knew Debbie was on an extended leave. I replied no but today was the day someone at HMH was going to hear from me! We’ve sent several emails and all in the same thread as she requests with no answer. So our back is covered. She gave me her assistant’s info! I had it but wasn’t sure I ever used it and would have found it in time but it was so good to just have it so I could immediately call her. She actually answered too! Praise! She said Debbie would be back and all but for now she would get Kevin’s info where it needed to be. Before Rolita sent me the contact I already forwarded (borderline tattle tailed) the entire thread since we started with Debbie to Jane. (Pre transplant coordinator with Galati) I prefaced it with I am trying to contact Debbie’s assistant but until then here is what’s happening with Kevin. Jane replied in a NANOSECOND! She said anything for me and Kevin! We love her soooooo much! She said she would print out the emails and take it to Tamara’s (post coordinator too) desk. She said if she could she would hand lick Tamara for us! That’s good to know. Aracelli answered my call so we were doubly covered after not being covered. She scheduled labs for Monday. I told her no one has actually gotten back with us from the last labs. So she peeked at them and not sure what she is allowed to know or handle so I just said I was concerned his Tac level was not in the therapeutic range and that we’ve had a second anti rejection med that he hasn’t started because we are waiting for instruction. I mentioned we are fine not starting it I’m not trying to push it. I actually don’t know much on this side yet and we are counting on them. She said his level was low and they like it higher and I guess that’s why she scheduled Monday labs.
Feb 20, 2018
New Orleans Vascular Follow Up Ultrasound and Appointment with Dr. Sternbergh
Monday through Wednesday of this week we were in New Orleans for this ultrasound and follow up. It went great. He said things could not look better! He said time the next visit with leaving for College or even see if we can see his trainee who is at Methodist (Linda Lay?) now instead of making the trip back. We wouldn’t mind the trip. We kind of enjoyed eating our way through New Orleans those three days! My favorite latte was at district donuts so we hit that place every morning for coffee. And of course beignets on the way out. We got to take Pastor Jackson and his wife out to eat too. They said how good Kevin looked! They truly only saw him at his absolute yellowest! We sound so old talking about how good his color is! Pasting the ultrasound report below from the patient portal just for us to reference. They gave us a cd but I need to check and see if anything is on it. Last time we did that nothing was.
Kevin M. Troutman
US LIVER TRANSPLANT POST – Details
Low normal hepatic allograft arterial resistive indices, slightly improved in comparison to prior examination. No definite hepatic artery stenosis on this exam. Continued surveillance is advised. Otherwise satisfactory liver allograft Doppler evaluation.
Electronically signed by resident: MUSTAFA ALHASAN MD
As the supervising and teaching physician, I personally reviewed the images and resident’s interpretation and I agree with the findings.
Electronically signed by: STEPHEN JOHNSON MD
Time of Procedure: 02/20/18 09:15:00
Accession # 27496368
Technique: Limited abdominal ultrasound of the transplant liver with Doppler evaluation.
Comparison: Ultrasound liver transplants 10/31/2017.
Patient is status post orthotopic liver transplant6 months ago. Liver allograft is normal in size. The liver demonstrates homogeneous echotexture. No focal hepatic lesions are seen.
The common duct is not dilated, measuring 5 mm. No dilated intrahepatic radicles are seen.
Color flow and spectral waveform analysis was performed. The main portal vein, right portal vein, left portal vein, middle hepatic vein, right hepatic vein, left hepatic vein, SMV, and IVC are patent with proper directional flow.
The patient is status post proper hepatic artery stent placement. Anastomosis site of the main hepatic artery demonstrates a peak systolic velocity 242 cm/sec.
Main hepatic artery demonstrates resistive index 0.55 with normal waveform.
Left hepatic artery shows resistive index 0.61 with normal waveform.
Anterior branch of the right hepatic artery demonstrates resistive index 0.54 with normal waveform.
Posterior branch of the right hepatic artery demonstrates resistive index 0.46 with normal waveform.
There is no component information for this result.
Feb 8, 2018 Kevin medication update
Labs look good. Here are the changes that I would like to make:
1. Decrease Prograf to 2.5 am and pm. Start tonight.
2. Prednisone 5 mg is back on the list.
3. Magnesium 1 tab 2 times a day.
4. Repeat labs next week to check the level.
We are waiting for her to give instructions on zortress. Kevin remembers her saying wait for her instructions. So it arrived in the mail today so we will wait!
February 6, 2018 5 Months Today
Kevin is 5 Months post transplant today. And, he steps into “interning” at our church. Last week’s labs were in the portal yesterday but I never checked them until this morning. (We had Bailey for 9 days while Tiffany and Grant were in Jamaica and they got back yesterday! We miss her so much! I found a pair of her sockies she left on my bed and we’ve all been walking around smelling them! They smell like Pudge! Cals said they should make a perfume that smells like her and call it Pudge!) Anyway, so this morning I looked at the labs. You would never know the LFT’s (Liver function tests) were a transplant patient! They look amazing! All within normal range. We contacted Crown College as well in this last week and they sent a “re-enrollment” application for the fall. We are praying about the perfect dorm to meet his needs. All the while that donor family who we have yet to hear back from is really who is completely on my heart and mind this morning. (And every day that goes by too…) Thankful Beyond Words.
Feb 2, 2018 Kevin clinic update
We went to the clinic and labs yesterday Feb 1. We had Bailey. They actually didn’t have him an appointment even though they told us last month to come. I told them we are doing our part keeping appointments and they needed to do theirs remembering to schedule them. Really that last month’s clinic visit we felt like they were trying to back up out of the room as soon as they were in the room! Kevin felt the exact same way. We told the ladies at the front desk too.
(Our regular coordinator was caught with a fresh transplant so we had a back up and she seemed like a new and in training one. She was beautiful and nice but didn’t dot all the i’s or cross the t’s like Debbie does) Poor Bailey. We waited 3 hours on the 26th floor. I also had emailed at least twice with no reply all month. No news is good news unless you have questions and unless they say we are adding another anti-rejection medication and never tell you when. I would say it was a terrible horrible no good very bad day except we had Bailey and she makes all things happy even if she had a blow out once we finally got in the room and lost her precious pearl baby earring. Well. I’m not giving up looking but for now it’s gone! But I can replace it. In my jewelry box is all the single earrings my girls lost! Now they have a purpose!
So today I sent a follow up email that said we are waiting to see what the levels are 🙂
Here’s the reply so we remember what to do and when.
Hi Beth and Kevin!
The Prograf level is still accurate if it is a little over 12 hours.
Here is the plan:
1. Decrease Prograf to 3.5 mg in the morning and 3.5 mg in the evening. Start tonight.
2. Start Magnesium oxide 400 mg. Take 1 in the morning and 1 in the evening. You can get this over the counter.
Some insurance will cover it so I sent over a prescription to CVS.
Liver enzymes look great. No other changes. We are waiting to see if the Zortress gets approved.
I have made the medication adjustments on MyChart so that everything is up to date.
Return to clinic in April.
Labs next Tuesday at the Woodlands so that I can recheck his Prograf level. You have standing orders there.
Please respond to this email so that I know you received it. If you have any additional questions,
let me know.
We didn’t have the .5 prograff. Briova is mail order so that won’t work to change today. But CVS can refill if we pay cash and the price Briova charges every time we reorder his meds is 67. CVS said insurance denied it of course so we would have to use Briova but I told her the fee they charge. CVS was 120 but they had a coupon for us and it ended up being $3 less so we can just get it today and would have paid that anyway but would have been hours on the phone and waited for mail delivery.
The insane part of transplant medication and when they change the strength often can not really be effectively done mail order. Just a tiny bit of stress. But, It’s all good!
January 4, 2018 OPC Clinic Visit, Labs, and Tent Treatment
Debbie had another patient in another room who was recently transplanted so this clinic visit was disheveled. But we had our list of questions and were determined to get through them all! My list of questions:
Transplant date? they have it in their system as 12/4/17 which was when he went into the hospital for fever and low wbc and he was almost 3 months transplanted then so we asked them to change it to 9/6/17
Estimated GFR? This is one of the labs they check every time and we have no idea what its for and if we should pay attention to it. She said its all about the kidney function and that honestly they pay more attention to the BUNN (?) and Creatine (my phone blog app still will not open this page so I’m on my pc and it doesn’t like any of these words I’m trying to spell!) Which they said based on his last lab he needs to drink lots of water because it’s borderline…water water water
CMV last return was negative. Don’t know that I will ever completely understand this one. He was positive and the donor was; yet, the last test for this populated in the portal said negative. So I’m thankful he doesn’t have this now! They say it’s horrible for a transplant patient and normal untransplanted people can just walk around fine with it.
Where is the TENT treatment today!? The calendar even says HMH WP11 INF SR 3 and they just tried to somewhat tell us but then said ask the security guard because they only know the back way that we cannot take. Or something like that! So we had a wilderness wandering after but found it in time! We had time for lunch then I asked Kevin if he wanted to go to Main 7 which was the floor he was on 15 times and those people are like family. He said sure so we hopped up there! Everyone was so happy to see Kevin!!!! The first person we ran into was Dr. Seelbach…he said how great Kevin looked and that he wished more patients came back because they only see them at their sickest! We headed to the nurses desk and were just overrun with great people and smiles! The cpa’s who changed sheets and took stats were even wheeling their machines by to smile and wave! I saw several wiping tears! Such an amazing floor of folks! They even asked by name about Bailey (who was having her own issues starting this very day…see Tiff’s blog the Dailey Baileyyy for that update)
Next Visit? The next visit is next month with labs every other week! Huge Praise! Kevin wasted no time in getting away from me either since later when Cole was heading back to college for the spring semester and Kevin was in an off week for labs I was like you could probably go with him! I’ve never seen Kevin pack and shower so fast! I doubled over in the kitchen crying at that too! He was just too happy to leave me! But it was a great thing to cry for him being normal! They had a great week and I withheld all attempts of momming up their week and left them alone!Billing? There is still the insane issue of Keith being billed for Kevin’s right heart cath back on 10/12/16! Kevin had to have it for them to list him yet they put it on Keith! We told them then it wasn’t Keith and we told our insurance. Well the hospital billed the insurance and the insurance paid it! We are beside ourselves and thought we were done until the red letters from debt collectors arrive in the mail this new year! I was ready to go toe to toe but they gave us a name Sue Weber and we know her and she knows us so we will calm down for a minute until we hear what she says. But only for a minute! They are the ones committing insurance fraud and we are being chased by debt collectors!