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!
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!
Thanks for the update, Erin. You are right--you have to place your trust in God and the liver team. Prayers always for all of you. <3
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