Marathon, not a sprint....Marathon. Not. A. Sprint.

Hello again, friends. Our triop to Disney World in March was fabulous!!  The past couple of months, however.....not so much.  I'm not sure my reasons, exactly, for the lack of posts....except I will say that I just simply haven't wanted to re-live any of it.  I'm in a great place right now this afternoon though, so here it goes!

Our first stop in Disney World!!

Elise was officially transformed into a princess, and Ethan was made a Knight at Bibity Bobbity Boutique (BBB) in Disney! 

Elise's labs when we returned from Disney World in mid-March were fantastic! So much so, that Elise's liver doc dropped her steroid dose down.  Her labs continued to trend down for the next couple of weeks which looked great, but then on 5/20/15, her numbers suddenly began to skyrocket. A biopsy was scheduled--her 3rd liver biopsy in five months-- but because of the Memorial Day Weekend, the biopsy couldn't happen until Tuesday of the following week. By the time of the biopsy, Elise's liver panel was the worst it's ever been.

Specifically, on 5/28/15.... AST 605, ALT 1011, GGT 124, direct bili 0.0.

Left: Elise and me in the pre-op area
Right:  I got scrubbed in and ready to help facilitate induction of anesthesia.  For her past 3 or 4 procedures, they have allowed me to go with them back to the OR until she is asleep.  It's much easier for everyone that way. 

Elise's biopsy was completed with no complications, and she was admitted for treatment of mild rejection-- again. Dr. Fishman is not convinced that this is a new rejection, but rather, more than likely a flare up of the original rejection diagnosed in March. In any case, Elise was immediately started on a 5-day IV steroid regimin inpatient at TCH. She responded fairly well and was discharged with an improved liver panel-- not perfect, but improved.   The hope--or plan-- was that her numbers would continue to trend down on oral steroids at home.

Elise with one of our liver docs, Dr. Himes, during rounds.

5/31/15.... AST 99, ALT 324, GGT 129, direct bili 0.0

Imagine my discomfort when Elise's repeat labs last week didn't reflect a downward trend; rather, her numbers were rising again.

6/8/15.... AST 110, ALT 370,  GGT 203, direct bili 0.0

Dr. Fishman wanted to hold off on making any med changes last week though. He wanted to speak w/ a few other members of the team and wanted to have another set of labs before taking action. As we know from a couple of years of experience with Elise, her liver panel sometimes fluctuates for reasons completely unrelated to liver issues. I must admit, I had some serious reservations w/ regard to this plan to "just wait it out." But I kept telling myself that Dr. Fishman is almost always right, and something very similar to this happened last year, and he proved to be exactly right in waiting.  And so that's what we did.

Which brings us to our "liver clinic" appointment with Dr. Fishman today 6/17/15 at TCH. Elise weighs 38.5 lb and is 3'2" in height.  When Dr. Fishman and Sarah walked into our room, both commented on how wonderful Elise looks! Big white eyes always make everyone feel better. When Dr. Fishman asked Elise how she was doing, she responded, "I like tap dancing better than ballet, and I'm also doing swimming."  Well there ya have it, folks! Sounds like she's doing just fine! Lol. Seriously though, Dr Fishman loves to point out, "We have to look at HER, not just her numbers." And SHE looks great.  More GREAT news though is that Elise's labs today are in fact MUCH IMPROVED!!  Praise GOD!

Liver Clinic-- June 17, 2015.  Elise, our transplant coordinator--Sarah, and our primary liver doc, Dr. Fishman

6/17/15..... AST 54, ALT 89, GGT 115, direct bili 0.0


Dr. Fishman was really pleased with these lab results today and decided to decrease her Prednisilone steroids by half and re-check labs next Thursday. He says that if her numbers continue trend down, then great! That would be ideal. But if her numbers next week are instead trending in the wrong direction....he has a couple of ideas for possible med changes. One major change he is considering making would be to add an immunosuppressant med Cellcept as a supplement to her Prograf,  because as he explained, she just can't stay on high dose oral steroids forever.

Another part of the plan for the coming week is an ultrasound of Elise's liver. Apparently, Dr. Fishman reviewed Elise's biopsy report with the pathologist and other members of the team, and within the tissue sample, there were some suspicious cells in question.  As a result, and in the interest of being thorough and leaving no stone unturned, Dr. Fishman wants the ultrasound to take a close look at the blood vessels and profusion of blood throughout Elise's liver. According to Dr. Fishman though, he really does not believe that the ultrasound will show any problems because if there were not adequate blood flow in her liver, her platelets would be low and her conjugated bili would be elevated...none of which is the case. Elise's platelets and direct bili are perfect, as is her liver function, as evidenced by her perfect albumin, clotting times, and vitamin levels.

So what have we been doing since returning from Disney World in March?  Clearly, I haven't been blogging.... lol.  We have been LIVING life and enjoying every moment of normalcy. Towards the end of March, I traveled to California to run a half-marathon in Livermore Valley with my uncle, who has been a virtual "coach" to me since I began running last year. 

Parrain Denis and me at the Livermore Valley half-marathon, showing off our new "bling" after crossing the finish line!

Then in April, I ran in my third half-marathon with friends in Galveston.  

Crossing the finish line at the DIVA half-marathon in Galveston, TX

Ethan graduated from Pre-K a few weeks ago....his graduation ceremony was SO cute! Elise was actually still inpatient at TCH on the day of his graduation, but David went to stay with her so I could attend with Ethan.

Ethan, the pre-K graduate!!  So proud!!

Elise started dancing classes a couple of weeks ago, and she couldn't possibly be more thrilled. She tells me she prefers "tap" over ballet.  And last week, Ethan and Elise both started this Summer's swim lessons!! In May, we took a quick trip back home to Thibodaux/ Houma to visit with family, and we are looking foward to "Grammie and Paw" coming over to our house this weekend for Father's Day weekend! 

Elise LOVES to dance....she likes both ballet and tap....but tap is her favorite! :-)

Swimming lessons 2015.....this year both Ethan AND Elise are participating!! 

Thank you all for continuing to follow Elise's journey. Dr. Fishman has often reminded me in one way or another that "This is a marathon, not a sprint." I keep reminding myself of that fact as well. There is no black and white instruction manual on post-transplant treatment. It can be compared to running a marathon through the hills of California; that is, the hills or bumps in the road might seem to high to climb, but they're not, and easier roads will follow. There will be times when we  will be running downhill--and we will celebrate and take deep breaths; we will use the good times to gather our energy for challenges that may lie ahead.

Elise has proved time and time again that she will fight any fight. She knows how incredibly proud we all are of her, and she absolutely thrives on that. She told me on the way home today, "Mommy, my liver is not broken...it is perfect!" That it is, my sweet girl......your new liver is perfect, and we will keep it that way, no matter what. 

LifeGift 2nd Chance Run.  It was rained out....but Elise and I enjoyed ourselves anyway. We never pass up a chance to spread the DONATE LIFE message! :-)

A Long Week in Liverland

So…over the past few weeks, Elise's liver enzymes have been climbing.  No argument about that.  The questions was whether it was actually liver-related--as in rejection-- or whether it was a simply as response to Elise's recent back-to-back illnesses RSV and pneumonia.  Not to mention the surgery to remove her adenoids and place ear tubes last month.

Last week, on February 18, 2015, her labs were pretty bad.  Her team said not to worry though, that they were watching closely. That night, I attended a reception at Saint Arnold's Brewery, in Houston, to honor the new Chief of GI/ Hepatology & Nutrition at TCH, Dr. Schneider. I was happy to visit with a couple of my very good "liver mom" friends, and also, several of the GI/liver docs were there. Elise's primary hepatologist, Dr. Fishman, assured me, in our brief conversation, that Elise would be fine-- one way or another.
              

We drew labs again on Monday, February 23, 2015, and the numbers were not good; in fact, her liver panel was much worse.

AST 574, ALT 628, GGT 84, bili 0.0

Sarah called me. She cut to the chase.  She said, "We need a biopsy." To which I replied, "When?" "Tomorrow," she said…"7:00 am."  The good news was that the procedure was scheduled within the next few hours…..the bad news was that I was FLIPPING OUT!  Let me tell you… it is extremely difficult to function as a wife, mother, and employee in times like this.  I just felt like everything was coming crashing down….10 days before our trip to Disney World that has been in the works for the past year.

The next morning, Tuesday, February 24, we were checked in to TCH at 6:00 am. Elise was the model-patient…until it was time for separation.  Again, she was not going to go to the OR without me without a fight.  So…..the anesthesiologist  graciously agreed with my suggestion that I "scrub in" and go with her to the OR to stay with her until sedated…just like they allowed to me to do the last 2 times.  They are getting to know me now very well in the OR, and they know I won't "freak out," so it's getting easier.  Elise's anxiety came down several notches once she was assured that mommy was going with her to the "doctor's room."

I was re-united with her in the recovery/ PACU area around 10:20 am.  She was already wide-awake when I entered her "cubicle." And then, the nurse promptly advised us that Elise was on four-hour bed rest. Ummm…..okay.   Let's just say I did my best.  So did Elise….but she wasn't happy about it.

By the time the bed-rest was over, we had 2 stretchers locked side-by-side, and every toy that we could find in the room.  Hours passed.  I knew that the liver team was admitting Elise to the hospital following biopsy, but I had no idea what we were in for.  16 HOURS in the recovery room/ PACU.  That's what.  It was almost midnight by the time we made it to the floor.  She had played with every toy, she had drawn on the walls, she had slept, cried, ate and rank every snack they could give her…..and she still passed out as son as we got to the floor…..thankfully….because I passed out shortly thereafter.

Wednesday, February 25. We started the day on the 12th floor with a little pet therapy.   Of course, Elise LOVED it! She loves dogs….like her "Biggie," and she was very happy to play with all the dogs that visited her room.

Later that afternoon, we received our visit from Dr. Sonny, the attending hepatologist, with biopsy results.  We LOVE Dr. Sonny…especially the way he explains everything in such detail.  As in…drawings.  He actually drew out what he and the pathologist saw in Elise's biopsy and explained it to me so that I understood the problem, and the proposed solution.  What he said was that Elise had acute moderate rejection and a viral infection in her liver. He stressed that mild-moderate rejection is quite common in the first couple of years post-transplant, and it can be effectively treated and resolved. Howver, the issue of both rejection and viral activity in her liver at the same time  makes the problem a bit more complex, however, so they consulted infection disease team, who agreed with a plan to start the anti-viral medication--Valcyte--in addition to the steroids treating rejection. So that night, Elise was started on a 3-day "pulse steroid" protocol, meaning mega-dose IV steroids, and oral Valcyte.      

                    
                                           
                                           


Oh my God. Let me tell you….I have been praying all along…. every day….but that night…. I pleaded with God see us through this.  As always though, I held on to my faith and belief that "If God brings you to it, He will bring you through it."

On Thursday, Feb 26,  I managed to get an "unofficial update" consisting of just Elise's liver panel numbers pretty early in the morning.  GOOD NEWS!

AST 433, ALT 609,  GGT 95,  bili 0.0

Around 3:45 pm that afternoon, the liver team actually rounded and presented those results.  They confirmed she was responding well the the steroids. ALSO, that nasty possibility of DeNovo Autoimmune Hepatitis was essentially ruled out with with this second biopsy. There were absolutely no plasma cells found, and all autoimmune markers were negative.  So according to Dr. Sonny, "we are not dealing with a new liver disease…Elsie and this new transplanted liver are going to be A-okay….this hospital stay is going to be boring--but necessary--and one wee from today y'all are going to DISNEY….you have the dining play for Elise, right?

PRAISE GOD!!

Later on that day, Elise got a little cranky (thanks to the steroids,) and she started begging to go to the "store"-- aka giftshop-- to get "a surprise." I really didn't feel like putting real clothes on and leaving the room, but I decided the walk would be good for both of us, so off we went.  Of all the over-priced toys in the gift shop, Elise picked a lip smacker chapstick… LOL.  So I got off easy.  THEN, it turned out to be the best chapstick I've ever bought, because on our way out of the store, we ran into her primary liver doc, Dr. Fishman!  Of course I was thrilled with the opportunity to chat with him. He basically re-interated everything previously discussed with the others on the team, and he said that he expected Elise would be discharged Saturday after the third round of IV steroids. As he started to walk away, I asked, "So…I guess we have to return for labs next week between discharge day and Disney?"  His response?  "Guaranteed….unless I'm going with you!"  Lol.  Fair enough.

Friday, February 27,  2015.  The liver team was very late to make rounds, but I managed to snag a sneak peak again. Can't reveal my source, of course. :-)

Later in the afternoon, liver team came in with the official word.  Well…. OK.. if you insist….I'll set up the scenario for you…..  LOL.  You know, I already had the lab results.  Well….Dr. Sonny came in with his student, resident, liver fellow, PA student, etc…..and he asks resident for all of Elise's results….. AST? "196."  ALT? "446."  Then… he asked for GGT. HELLOOOOO… the most important marker for rejection.  Resident MD respond, "I didn't write that down."  I responded, "88."  Comic relief for everyone in the room…besides that resident MD.  Sorry.  They might have forty patients…but I only have the one.

I can not believe the lability of Elise's mood while on steroids….one second, she was my sweet princess; the next second she would seem possessed, throwing herself on the ground, and no one could reason with her.

Also on Friday, we had Elise's post-op follow-up with the ENT and a visit from daddy and Ethan!  It was as good as days come impatient, as far as I'm concerned.  Around 8:00 pm, Elise received her last dose of IV Solumedrol 325 mg….aka….steroid bomb.  Thankfully, she slept through the night, and so did I.

Saturday, February 28…labs were drawn at 7:30 am, and I started asking around for results at 8:30 am. I found a source which obliged around 8:45 am, and the results looked GOOD to me, so I was able to wait on rounds in peace.

AST 183, ALT 382, GGT 90

The team rounded around lunch time, and we were discharged as planned! YAY!!  Of course, she is home now with some adjustments to her meds, but totally manageable.  The team doubled her anti-rejection med, Prograf, to 0.5 mg (1 mL) twice daily and added Prednesilone (steroid) 10 mg/day, Valcyte (anti-viral,) and Prevacid to reduce stomach upset. We will go back for outpatient labs on Wednesday, March 4, and then OFF TO DISNEY WORLD the next day!

We are so blessed.

Is this week over yet??

Hello friends… it's been a long week.  Let me give you a review.  We have routine news, bad news, and good news to share! What else would one expect from "Liverland?"

Last Thursday January 29, Elise underwent her scheduled operation for adenoidectomy and ear tubes-reinsertion.

The only little problem we had was separating her from me in the pre-op area.  But I quickly suggested that they allow me to scrub in and go back with her to the OR, so as to reduce the trauma [for both of us.]  

My husband, David, being an anesthesia provider, can't believe that they allow me to do this, but they do…..this is the second time in a row.  Thankfully, we have been having very reasonable anesthesiologists, who trust me not to "freak out" when Elise goes limp in my arms. Now, let me tell you….there is a HUGE difference between your child sleeping in your arms and your child falling unconscious in your arms.  But nonetheless, I know what to expect, as I have done it before and acquainted myself with the process of anesthesia, and it is MUCH less traumatic for her to fall asleep this way than in a cold room with strangers in masks after screaming for several minutes as she walks down the hall.

I digress….Elise did GREAT with the surgery… so great, in fact, that the ENT and liver team decided to discharge her home with pain meds and 3 days of antibiotics rather than keeping her inpatient overnight as originally planned. I personally couldn't have been happier to bring her home. She did struggle with pain for a couple of days, but nothing unmanageable.

This past Saturday, approximately 48 hours post-op, I noticed she started coughing.  I tried to rationalize, telling myself she just had her adenoids removed, and her throat is probably scratchy and irritated. Then on Sunday, I became a little more concerned, as her cough became worse, and she spiked a fever of 101.2. I decided that this warranted a trip to the pediatrician in the morning.

On Monday morning, Feb 2, I took her to see her pediatrician. Her o2 saturation was 97% at that time. She was coughing quite a bit, retracting, and breathing very fast, but after an albuterol breathing treatment, her symptoms improved, so we were sent home.  I asked whether antibiotics might be warranted, questioning whether this might be--or might develop into- pneumonia, as we have experienced several times in the past. But…you know…doctors are under pressure to avoid ordering "unnecessary tests" and to also avoid antibiotics whenever possible. And so….we went home and started up breathing treatments three times/day. 

Yesterday, the coughing was worse, but she didn't really have a temperature over 99-100, and she didn't appear to be in distress…..until later in the evening.  When I was getting her ready for her bath, I noticed she was breathing fast--approx 38-40 times/minute, retracting, and when I checked her o2 saturation, it was ranging 88-92%.  I gave her a breathing treatment, and it improved to about 94%.  I really debated at that point about whether or not to bring her to the ER right then and there.  I decided to just increase breathing treatments to every 3-4 hours over night, checking SATS frequently, and try to wait and bring her in to see the doctor again this morning. So that's what I did.  I checked her and gave her a treatment at midnight, and again at 3:30 am this morning.

At 8:00 am, I spoke to Elise's pediatrician as I was on the way to her office. When I gave her a run down of her vitals overnight and indicated that her temp this morning was 100.3, she told me to head straight to ER at TCH. She said she would notify liver team that I was on the way with Elise, in respiratory distress, and that I should not have to wait to be seen. And I didn't.  I never even signed in to the ER. Come to think of it, I don't think I ever signed a "consent to treat." I'm sure I'll get a phone call about this tomorrow. 

Anyway…chest x-ray and labs were ordered quickly after we met with the first set of doctors- the ER resident, fellow, and attending MDs.  Liver team quickly involved themselves in Elise's plan of care, and they consulted pulmonology as well, since Elise has been followed closely by pulmonology since last year when she had several  bouts of pneumonia and a case of RSV. The ER resident came in shortly after the x-ray and stated, "the x-ray looks clear."  That didn't sound right. I asked about labs. At that point, the only thing back was her CBC which showed an elevated white blood cell count at 15,000. I asked, "well, that WBC looks like an infection brewing….but your'e saying there's no pneumonia or bronchitis, etc?"  She responded with comments that pulmology should be on their way down, and they'll give their opinion.  Good.  Because I could hardly wait to hear it. 

The pulmonologists did see her shortly thereafter. They reviewed her x-ray and examined her, and without a doubt, they confirmed that Elise has "full blown left-side pneumonia." They indicated that they could hear it on her left side, and after reviewing her history, suggested this is likely a bacterial aspiration pneumonia resulting from anesthesia during her recent surgery.  They spoke with liver team, and then ordered a round of IV Rocephin antibiotic to start treating the pneumonia. 

The only question that remained was whether to keep Elise inpatient or discharge her to treat the pneumonia at home. The ER attending deferred to Pulmonology attending, who deferred to liver team attending.  I asked, "Well, who is the liver team attending on service right now?" I was told, "Dr. Doug Fishman. He said Elise is well-known to him."  To which I replied, "LOL, you think?  He's coming down here to see her and talk to me, right.?"  "Yes, I believe he is," said ER doc. 

I could hear Dr. Fishman in the hall several minutes before he actually came into the room.  And then there was "the knock."  I can't count the number of times I've heard that knock during liver clinic appts and hospitalizations over the last 3 years. That knock actually makes me happy though, because I know that things are under control when he's around. 

And so, Dr. Fishman examined Elise, and then asked whether I had seen her liver panel. Well, as a matter of fact, I had.  He assumed as much…he knows I'm all up on her numbers hot off the press. 

He couldn't help but grin.  That's right.  Her current liver panel actually warrants a SMILE!  SHE"S BACK AT BASELINE!  Even in the face of pneumonia!  

AST 68, ALT 61, GGT 40. 

Which brings me to the rest of my discussion with Dr. Fishman.  You know, I have already had a consult/ liver clinic appt on his books scheduled for next week, Feb 11, to discuss in detail the new diagnosis of DeNovo Autoimmune Hepatitis (AIH.) He acknowledged that upcoming appt, then offered to start the discussion now, while we were face-to-face.  

Bottom line… Dr. Fishman says he is actually no longer ready to commit to the diagnosis of DeNovo AIH. He said that he has not started meds yet to target AIH because it may be "something to watch for but not necessarily diagnose" at this point. We reviewed her biopsy report together, citing the fact that there is absolutely no evidence of any fibrosis or cirrhosis, or any damage to her liver whatsoever.  There was 1 single plasma cell identified, but Dr. Fishman says that in a case of true DeNovo AIH, he would expect to see a whole host of plasma cells. The ANA profile, he said, pointed to DeNovo AIH, but it is more like "consistent with," and not necessarily a conclusive.  In any case, he says, "in a Dr. Shepard-ism," "MUCH better to have a little touch of rejection or Autoimmune Hepatitis than to have a real post-transplant complication…. like post-tranpslant lymphoproliferative disorder (PTLD,) which would be a risk if we start throwing steroids and increased immunosupressive therapy at Elise to target autoimmune hepatitis."

I can't even tell you how much better I feel after this conversation with Elise's liver doc, Dr. Fishman.  I just wish it wouldn't have taken an entire day in the ER fighting pneumonia to get this face-time.  But now I feel even better prepared for our appointment with him next week. I won't be so much like a "deer in the headlights" going into it. 

Tonight, we are back home as a family.  Elise was discharged home after receiving IV antibiotics in the ER, and she is to continue oral Cefdinir antibiotics x 14 days at home.  We will see her pediatrician tomorrow morning, who will give her an injection of an additional dose of Rocephin, and then we will be following up with pulmonology and liver clinic next week. 

On Friday, Elise's Grammie & Paw will join us to attend the Houston Rockets' basketball game, where Ethan and his TOT basketball team will perform for the pre-game show.  I believe he will be receiving his first trophy, and he couldn't be more excited.  I couldn't be more proud. 

I just couldn't be a happier mommy.  We have our challenges, but doesn't everyone?  As they say, "what doesn't kill you makes you stronger."  And I know for  fact that everything we battle with Elise makes me a better mom, a better social worker, and a better wife.  

"Elise is a Trooper!"

Today, after several hours of labs, clinic appointments at TCH, and several conversations with various members of Elise's treatment team, I arrived home to begin my work day.  One of the doctors I worked with asked, "How'd everything go?"  And I bet he wished he hadn't, because I gave him an ear full.  "Well….Elise is a trooper!" That's what he said.  Why yes…yes she is.  That's all she's ever known how to be.

Let's start with the good news.  Elise's labs this morning were pretty good, relatively speaking.  Her liver enzymes are dropping, which is great!   AST 100 (down from 263,)  ALT 110 (down from 254,)  GGT 44 (no significant change.)  Her Prograf level is perfect 2.3, so no change in her Prograf dose.

                           

After labs this morning, we met with Elise's pulmonologist and ENT for post-hospitalization follow up. Elise has had several bouts of pneumonia and other upper respiratory infections over the past year, RSV in November, and she promptly developed a double ear infection last month after her tubes fell out. After some collaboration on her case, her ENT presented me with the recommendation that they schedule surgery to replace her ear tubes….and remove her adenoids, the reason being that adenoid removal might clear up her airway and help her to breathe better even when sick, thereby reducing risk of infection. And you can be sure…anything that equals reduced infection risk will get liver team support.  So I knew that would be a non-issue, other than of course the fact that this would-be day surgery is going to turn into at least an overnight stay at TCH under the liver team to be sure she doesn't develop a fever after surgery or experience any complications that could negatively impact her liver.  Okay.  Fine.  Sounds like a plan.  It's another surgery under general anesthesia, which I'm not crazy about, but the benefits seem to outweigh the risks, and we're on board. So, we scheduled surgery for January 29, 2015.

                                          

Now, if you recall, we were discharged from the hospital a couple of weeks ago, on December 30, after her liver biopsy showed no evidence of rejection. What wonderful news!  One of the last little tidbits we heard from our liver center director, Dr. Himes, before we left on our merry way was that Dr. Fishman would order "just a few extra tests" to look for auto immune hepatitis (AIH,) "just as a precaution," because they saw one single plasma cell in her liver biopsy which could be consistent with AIH. He said this condition is rare though, and that typically there would be more than just one cell…..anyone could have just one plasma cell hanging out, right??

De ja vu….."tests," "rare," "consistent with…"  I've heard this before. No matter how many times I hear these phrases though, I always assume it's going to turn out to be nothing.  And then it's something.

So, last week, these tests for AIH were drawn…specifically, they ordered an F Actin AB IGG, IgG, Liv/Kid Microsome AB, and an ANA profile.  After a couple of days, I emailed our coordinator regarding results and quickly received a response that "everything is fine….but the ANA profile is still pending."  GREAT!  This past Monday 1/12/15, I followed up again; I asked whether the ANA profile results were in.  And with that began the longest week I've spent in Liverland in quite some time. Sarah indicated to me that the results were "available" but "not released" by our liver doc; she said that once he reviews the results, she would get back to me.  I made countless calls and sent many emails to our team again on Tuesday, Wednesday, and Thursday (yesterday,) but to no avail. Sarah of course responded to each and every one of my outreach attempts, but only to say that her hands were tied; she repeatedly explained to me that she could not access the results to disclose them to me until they were reviewed and released by the ordering physician.

I was so upset by the end of the day yesterday….I was literally becoming ill. It's really interesting how such strong feelings of anxiety, worry, fear, and anger can manifest somatically.  I was able to get some sleep last night though, knowing that I would be at TCH today, and I was sure that I would be able to pin down some results one way or another. And that I did.

Around 1:00 pm today, I was informed that after a careful review of Elise's biopsy together with the ANA profile, it appears that Elise does in fact have "a mild case of De Novo Autoimmune Hepatitis."  I asked, "She has a component of Autoimmune Hepatitis?" Response: "She has Autoimmune Hepatitis." I asked, "She has DeNovo or just some other type of AIH?" Response: "She has DeNovo; it is De Novo AIH."  It's like I wasn't hearing it for a few minutes.

Of course, as I doodled some non-sensical notes on the paper in front of me, I asked question after question. The "take-away" is that Dr Fishman basically sees this more as "information," and obviously a complication, but definitely something they can manage. He said that we are not adding any meds or doing anything differently in her treatment plan at this point. I asked whether this AIH would lead to her needing another liver transplant in the future, and he said that it should not mean that.  He said they will simply monitor her labs, as they already do, and if it ever flares up to the point that additional meds are of more benefit than risk, they will intervene at that point. Right now, with Elise's liver enzymes actually trending down towards normal, the addition of steroids and/or other meds to target AIH would likely re-activate CMV (Cytomegalavirus) and EBV (Ebstein-Barr Virus) issues, and the last thing we need is for those viruses to again rear their ugly heads. Apparently, this AIH can be compared to other chronic autoimmune disorders (i.e. Chrons Disease, Lupus, etc.) in that there will be times that things are baseline, and there will be times that the condition will flare up and will look like rejection, so there will have to be a careful differential diagnosis made.

I felt like I asked a million questions, but I guess not, because I still have a million questions left, and I've scheduled a phone call with Dr. Fishman for next Tuesday to address these concerns.  I am also considering scheduling an additional "liver clinic" appointment with him and our team, because given this new information and diagnosis, I feel that some face time is in order…..and it can't' wait until the end of March.

By all accounts today, Elise looks GREAT!  And I have to continuously remind myself to look at HER, not her "problem list' on her paperwork at TCH, because frankly, it is a mile long.  Like we discussed today, Elise's identified problem is that she is a liver transplant patient.  Period.  Secondary issues such as EBV….CMV….rejection….and now AIH are just that…..secondary; these issues are just complications…..these are the "bumps in the road' that the team has been telling me we would encounter since Day 1.  And since Day 1, they have also been telling me, "We can manage any complication post-transplant."  Honestly, we would have no idea about this De Novo AIH had it not been for the team ordering the right tests at the right time.

And so….like I have done so many, many times in this journey…I am placing my trust in God and in Elise's liver/transplant team at Texas Children's, for I know she is in the most capable hands possible. God has blessed us by placing us here in Houston where we have access to this team….and I am sure that Dr. Fishman having me wait five long, excruciating days this week to hear the test results and plan is just God's way of teaching me patience.  Dear God, I HEAR YOU!