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.
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.
