Kevin – 2013

December 26, 2013

Kevin went for his scheduled ultrasound appointment today at 11:00. It was pretty uneventful. He couldn’t eat or drink 8 hours before and once we arrived to TCH it seemed to be the least crowded we’ve seen it. I don’t think the entire appointment even lasted 45 minutes. We had a very nice ultrasound technician. Keith and I were allowed in the room to watch. She pointed out everything she saw on the screen which was very interesting. The room was dark and quiet so I’m not gonna lie–I got pretty sleepy looking at Kevin’s innards! It was fascinating. I wish I could say I saw the surface of his liver. She said it looked smooth. She stepped out long enough to show the images to a doctor to make sure she got everything I guess. No real news for us yet. He is continuing his steroids along with his regular meds. No real side effects to speak of either. Which I’d say is all good…

December 20, 2013

#notgonnamissthis

I attended Caleigh’s last elementary Christmas party today! It was hotter than hot! We were melting in the classroom! I was also faithful to my Quest to Quest:) I phoned early today TCH just to check if the supervisor Don actually phoned Tiffany. I worked retail enough to know the phrases used to buy time; put off customers; redirect! Of course that is not what they did at all but honestly it’s in my mind. Keith’s motto: trust but verify. It’s all I was doing. Verifying trusty TCH:)

So I have my phone with me all day. Knowing since I left a message the return call would come….and it did. Terrific TCH Tiffany called only I was in Houston traffic. She explained wonderfully and so patiently and I will just put this out there repetitively what Quest filed. And what they needed that they haven’t filed but requested. What they need was Prometheus Thiopurine Metabolites. (Made her spell it. I googled it. Am pasting here. This is sent out to California)

“PROMETHEUS® Thiopurine Metabolites Cat. # 3200

PROMETHEUS® Thiopurine Metabolites testing assists physicians in optimizing ongoing dosing of thiopurine immunosuppressant therapy to reach and maintain therapeutic goal. Thiopurine metabolite testing also helps to identify drug metabolite levels that may lead to toxicity and some of the reasons for treatment failure.

• A quantitative evaluation of 6-TGN (thioguanine nucleotide) and 6-MMPN (methyl mercaptopurine nucleotide)

• PROMETHEUS Thiopurine Metabolites is only offered at Prometheus.

• Specimen Requirements – Whole blood, 5.0 mL; EDTA / Lavender Top Tube.

• Shipping and Handling – Refrigerate; Ship with cold pack (DO NOT FREEZE).

• Storage Conditions/Stability – 8 days refrigerated; 24 hours ambient.

• Turn Around Time – 3 business days from date of receipt.

• Therapeutic Range – 6-TGN: 235-400 pmole/8X108 RBC; 6-MMPN: <5,700 pmole/8X108 RBC.

• Prometheus is located in San Diego, CA. Tax ID# 33-0685754 NPI# 1073642641.

• Licensed in several states including New York and California.

• Prometheus Laboratories Inc. is CLIA certified and accredited by the College of American Pathologists. This test was

developed and its performance characteristics determined by Prometheus Laboratories Inc. It has not been cleared or approved by the U.S. Food and Drug Administration.

CPT Codes (as applied by Prometheus)

• 82491(X2), Quantitative HPLC (High Pressure Liquid Chromatography) for each nucleotide in peripheral RBC,

separate stationary and mobile phase.

• Dubinsky MC, Reyes E, Ofman J, et al. A cost-effective analysis of alternative disease management strategies in patients with Crohn’s disease treated with azathioprine or 6-mercaptopurine. Am J Gastroenterol. 2005;100(10):2239- 2247.

• Seidman EG, Clinical use and practical application of TPMT enzyme and 6-mercaptopurine metabolite monitoring in IBD. Rev Gastroterol Disord. 2003;3(suppl 1):S30-S38.

• Cuffari C, et al. Utilization of erythrocyte 6-thioguanine metabolite levels to optimize azathioprine therapy in patients with inflammatory bowel disease. Gut. 2001;48:642-646.

• Dubinsky MC, Lamothe S, Yang HY, et al. Pharmacogenomics and metabolite measurement for 6-mercaptopurine therapy in inflammatory bowel disease. Gastroenterology. 2000;118:705-713.”

It was not checked in what I thought under metabolic panel. (Now I know that. It isn’t even done at Quest:) see above googled and pasted info!)That is done for the doctor to see like chemistry different levels and I think she can tell if he’s taking his medicine. Some numbers help her to know where he is in relation to other numbers. So that made sense. She said they put in a complaint or spoke with Quest with where their system was failing. Which was good to know. I just didn’t know my part in this. I want Kevin to have the best care. I want to be as informed as I can be. Including being told all information whether I know what they are saying or not. It can just add a new wrinkle to my brain. So the next time I hear it it will sound more familiar!

I asked if there was a lab who allowed us to log in and see what they checked. She said no. Sometimes the dr will release them to my chart but so far they don’t have that. I just think there should be. Maybe because it is a way to check after this that what we leave the office thinking we will go and get tested for actually was done. Even if we have no idea what the test results mean we can see the completed information!

That test will be ready to read on the 26th. His ultrasound is that day. She also called me back once I got home which was an answer to prayer. No sooner was I telling Keith over dinner I just felt so perplexed. Lots if information. He said give it time. Then Tiffany called again. She had checked with Quest to be sure that this time they really did run that test. And they did. It was almost 7 pm. She made me happy cry telling me “Miss Beth I am the only one left in this building! I have been checking on you and she stayed until I got it!” Isn’t that just the best. She said she knows I am trying and only want what’s best for my son. Yep. Exactly. And I know they think we know more than we do because we are in there a lot but really I hear the buzz words and only do what they say. I can look and sound like a real idiot! I’m sooo literal! It is the biggest of my setbacks. I even try to figure out what I’m being literal about so I can give myself a heads up and then still get hit with the Amelia Bedelia award!

All that to say I am relieved to know that it feels like closure. As much as I want to give Quest what for I think they have. I also know I have learned to follow up! Somehow things got really layered with paperwork and the trail was fuzzy. It’s good. I’m good.

December 19, 2013

After Tiffany from TCH explained what to look for on the insurance claims I did just that. I saw several times a metabolic panel was ordered so thinking that was what was missing I called Quest. Very blessed to have an informative willing listener behind choice number 3! I think her name was Estella. She took my information and walked it to client services and said we should hear from them soon. Like within 30 minutes soon. And we did! Don one of the supervisors called. I explained as best I could what I thought was missing. He said he would call Tiffany at TCH. There are definitely some communication issues this company needs to work out but they were approachable and caring with what I call compassionate and attentive ear.

December 18, 2013

Inside Eyes

That seems to be my happy phrase for this update. We got the numbers call. Here are the numbers:

GGT: 147 normal is 31

ALT: 52 normal is 46

AST: 41 normal is 32

Thyprorine (?) metabolites will not be ready yet. One call they were throwing out all kinds of terms. Like 6mp and promethisis! She said it was just levels that they counted.

So the GGT doubled and the liver panels were on the rise. Dr. Walsh called me herself. Gave such good clear information. She prepped us well yesterday with the various plans. So she ruled out that it was a virus. She put him on a steroid called Budesonide 3 mg per capsule and wants him to take 9 mg each day. She said this one is different from the first one he was on and a lower dose. Such good news. She also ordered an ultrasound. We will have that done on the 26 th. It’s right downtown at TCH. And he cannot eat for 8 hours before.

It seemed like the calls were back to back with her office checking on us after we had time to take in the new news. Then scheduling an ultrasound. Then she knew I was on the quest case to find his missing numbers so she had a wonderful assistant (?) named Tiffany call and explain that. I get it. Not sure I can make anyone else get it. It still is somewhat frustrating and definitely a problem but my desire to hunt them down and just make them give us those numbers has all but diminished. As “orders” for labs are entered, the people drawing the blood really only see one at a time. Even if I say they need __________ checked. I can’t order it:) She gave me the best info. Always ask what they are drawing. We need to know what we are there for. Which sounds like a no brainer but if I say are you checking _______. They may just say what they see. Sometimes the code is off. Instead if they say what they see and I ask is this one there that we are for sure needing then if they say they cannot see the order we are to pick up the phone and call their office. They can remedy that situation easier than making numbers appear of lab work that was ordered but really never seen. Switching labs will not help.

I just want to help. I want justice done. We ordered these numbers three times. If they are out there I want them. But the thing of it is the actual orders are still out there. She could see that they were never followed based on other doctors submitting orders and the flawed system of them only being able to see the last order. It is ridiculous I admit but who knew!! When they say there is a standing order I figure they know what to check! She is turning this into her contact. I wish I knew who to turn it in to. Just as helpful info on what to expect and not expect at Quest!

She asked if I had questions. It is unbelievable that I actually asked her this but I did word my question to her this way: so with all you are seeing you feel sure he has autoimmune hepatitis. Just checking. Kevin asked how long he needed to take the steroids:) I’m like good question. I’m guessing as soon as his numbers start heading back within normal range:) We thought the numbers could be skewed since we never fasted before the routine lab work. But she did not think we needed to fast before those levels…

So many prayers and concerned family and friends. I know I’ve texted answers to how Kevin is actually feeling. He is feeling fine. Which is why I titled this invisible eyes. And I am praising Him for what the doctors can see in the blood work!!! They have caught this one before he knew he even had it! We are fearfully and wonderfully made. Ps 139 This thought got me back. Snapped out of my crying spell if you will. Inside eyes. They can tell so much from the blood work! I am praising Him for that and know He’s on top of this:) and so is TCH!

December 17, 2013

Bummer…I poured my heart out and the entire thing went away…horrifying yet a great reminder I forgot to save…plus maybe not the best idea to update on my old iphone! I feel better even though none of it is recorded for me to see!

Today was a check up with Dr. Walsh downtown Texas Children’s Hospital TCH. She is concerned about Kevin’s GGT level. (Explained it gives us insight into what the bile ducts are doing which lead out of the liver.) September it was at 44 and November it was up to 77. The post below was a wonderful 26! I’ll admit I teared up as it was hitting me that this was not the quick good news/normal numbers routine visit I was expecting but as she incitefully explained and mentioned they are on top of this…Keith reminded me of this exactly! Depending on today’s labs several options are available. Ultrasound. Biopsy. Steriods. Increased dosage of his daily medication or it could be nothing but a virus his body has been fighting…none of which we will even know until we get the numbers call. (self: you even sound better! Good job phone for deleting the wordy whiner!)

I do know it was very frustrating to her and me and Kevin that Quest Diagnostics has still not provided some levels that we know we are asking for yet they do not have. Keith said for me to call them since we have paid for lab work we either need to know where the numbers are or get a refund. And for the record to myself Kevin did get his flu shot on Oct 8 at the CVS. (Too bad we couldn’t remember that when we were being checked in!) She did ask how he was feeling of which we explained the migraine meds Dr Pope put him on as a back up to regular advil and the concern Dr. Tsai W had when we saw her for heartburn related issues since we couldn’t get ino Dr. Pope and that she too ordered labs and even hunted us down by phone because we hadn’t gotten in yet! So crazy that those numbers are nowhere! Dumbfounding! She said she would call us with the today’s numbers this week but the ones that tell us if he has out grown his dose (metabolytes?) will take a little longer…which is so frustrating since we have asked for them at least twice now! We should have something to compare to! And I guess I am shocked since the last visit we even discussed getting off meds in the future…she mentioned that she had been discussing Kevin’s case with colleagues but after seeing the latest labs was like…forget that for now lets figure out why that number is increasing. Dr. Walsh used this as a reminder to Kevin that no matter how he is feeling what he has is for a lifetime and he needs to keep his check ups and lab appointments:)

I am feeling frustrated yet confident and trusting with some weepy tears…love that when the tears started flowing in her office that she looked at Kevin and said…well, he seems to be use to it! Keith however gave me a once over over the phone that I shouldn’t be crying with Kevin right there! I love that he is looking out so for his boy that makes me weepy and for sure know that just maybe I shouldn’t be the one going to the check ups! One thing I know–my kids are use to my tears. And my precious Lord and Savior catches every one…He cares so much for us. I am just determined to keep calling on Him for healing and know He has a perfect purpose and plan for Kevin’s life.

June 18, 2013

The routine blood work numbers came in but we will just have to wait until next time for the metabolite check. The dr called and the orders just weren’t followed. No rush she said.

So here’s the routine:

AST:20 range (12-32)

ALT:13 range (7-33)

GGT:26 range (8-32)

June 11, 2013

We saw Dr. Mehta today. It was just a routine check up with labs. She is requesting labs today to check metabolites. I think here she mentioned to see if he has grown out of his dose. Also, she mentioned down the road … After college even, like that far down(!) that there is a chance he may can try coming off of his medicine. It would be our choice. So that is something to think about! She would be keeping close labs if we did. And it would involve another liver biopsy. Today we will draw labs. I just need to remember to put the 3 month lab on my calendar. I think we forgot to do one between 6 months visits! So we will do several labs while she is checking his dose levels but once that is determined we will be back to every 3 months.

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