Date: 3/16/2010
Hey Everyone,
As some of you may know Sarah has been having some severe stomach pains for the past 3-
4 weeks. We went into the doctor who put her on some pain medications and instituted a strict
bland diet, this has proven to do very little to her situation. We went in for an endoscopy this past
Friday which confirmed that it was not an ulcer or some kind of internal bleeding (Praise God).
However, they were unable to give a diagnosis, they aren't sure if more test will be required until
they get the test results back from the biopsies they took from her stomach.
Her doctor is out Thursday and Friday which is when the test results are due back in so we
are praying they come in by Wednesday. He initally thinks it could be H pylori (which is
very treatable with medication). In light of her continued pain he upped her medication to that
equivalent to what they give cancer patients going through treatment. (Please be praying these
results make it in)
We thought we were doing somewhat better until this morning when Sarah's eyes were
extremely yellow and multiple other side effects gave evidence to issues related to her liver and
gallbladder blockage. Sarah's RN at school this morning has informed her to immediately seek
out blood work and to have a sonogram performed, therefore, Sarah is currently on her way to do
just that.
Please be praying for Sarah during this time that the doctor's would have wisdom as they review
her present condition and assign her medications or treatments associated with it. Pray also
for God's great hands of heeling to be placed upon her body. We know that God always has a
purpose in these type of situations so please be praying for us to be increasingly aware of our
dependency upon him and to not lose focus on who is truly in control. Be praying also for me
that I may be a gentle and supportive leader for Sarah during this time.
At this point, aside from the large amounts of pain an nausea, Sarah has been able to function
somewhat ok. I am not sure of how this news will impact her going forward as all of this new
medical terminology is a first for me.
Thanks everyone for your prayers!
Trevor
Date: 3/18/2010
Hi Everyone,
I first off must say THANK YOU for all of your prayers! We have truly felt God's presence
through this process and seen His hands at work.
Continued Update from the message below....
Since Sarah had turned the color of a yellow pumpkin her doctor ordered a second round of
immediate blood tests and an MRCP (basically an MRI of your abdomen area) which we
completed yesterday morning and early this morning (she had a bilirubin of 11.2 when the
average person has a 1.2). We give praise to God that her MRCP came back negative showing
that there was no signs of blockage whatsoever from her gallbladder to her liver. However, this
test did take the focus off of the gallbladder and put it solely on the liver (gallbladder would have
been an easier fix with less implications, while the liver carries a whole new level of severity).
We received a call today around 4:30pm that advised us to go immediately to the ER since
her doctors were seeing uncertain signs in her blood tests. They decided that going to the ER
would allow for potential treatment that could be needed as well as expedited results. This
was very scary since we had no idea what laid ahead...we thank you very much for praying
for us during this time specifically! This is where it get's confusing, but is still better news
nonetheless. Basically, the doctor said "this is very confusing for us and we still don't know the
problem" however, her liver enzyme levels are remaining constant which rules out many serious
life threatening possibilities. They believe it could be resolving Hepatitis A or B but are still
unsure....her test results are currently be reviewed at Mayo Clinic which will not be back until
Tuesday at the earliest. We still have many doctor appointments coming up with multiple blood
tests to continue to monitor her levels. Her nausea and pain have greatly decreased which is a
huge praise as it gives possible evidence that the healing process has already begun.
Once again thank you for your many prayers. Please continue to pray for the understanding of
her test results and wisdom for the doctors to consider and review all aspects of her case so that a
true cause can be detected and an ultimate solution given. Pray also for us to continue to realize
that God is bigger then the situation and to keep our focus remained on him. Love you all
Trevor
Date: 3/18/2010
Everyone - I just wanted to let you know that sarah has been released from the ER do to the
current test results and her consistent liver enzyme levels!
Trevor
Date: 3/20/2010
Hey Everyone,
We just received a call from Sarah's doctor and they have confirmed that she has autoimmune
hepatitis. In summary this is an inflammation of the liver that occurs when immune cells
mistake the liver's normal cells for harmful invaders and attack them, this is not contagious
and doctors in general still don't know what causes it. It is very important to catch this early
for the highest success rate of curing her liver, however, it is not uncommon for this to become
chronic.....PLEASE, PLEASE keep praying that this would be a very acute form leading
Sarah to recovery in a month or so (the odds don't necessarily fall that way). We have received
medication for immediate treatment of this disease and have been issued a very high dosage
that of course comes with side effects. We have our next appointment on Monday to learn more
about Sarah's condition and things involved, we are also still awaiting more results from Mayo
Clinic.
Please be very careful discussing this topic with Sarah (she is not on copy) as this diagnosis
is much scarier then hepatitis A or B and therefore has serious possible future implications
including a liver transplant (we of course have a positive outlook and our not focusing on
or discussing this, but I want you to understand the severity underlining the diagnosis). We
know that God is still in control and we pray that he brings healing upon Sarah while we begin
treatment. Thanks everyone for all of your prayers thus far.
We Thank God for how great all of you are in supporting Sarah through this time. At this point
amidst tons of requests from you guys to serve us in anyway possible the only thing we ask is
that you continue to pray. THANKS SO MUCH for being so faithful with that!
Trevor
~We praise God when He blesses us, so we praise Him still when things don't go our way.
Habakkuk 3:17-18 / Philippians 4:4-7~
Date: 3/24/2010
Hi Everyone,
As I mentioned in my previous e-mail we had a doctor's appointment this past Monday, I have
not filled everyone in on that until now since it was a very interesting encounter that seems to be
a HUGE answer to prayer! Here is what took place:
We went into our appointment with the liver specialist along with an extensive list of questions
(typed out) that we wanted to discuss so we could understand all complications and inquiries
associated with Sarah's condition. It was an extremely informative meeting where the doctor
covered and answered everything on our list. The meeting went well as far as information goes,
but the content we covered involved many complications to come as well as other large issues
we would need to address. Initially upon entering the doctor's office we had asked for hard
copies of our test results so that we could show them to others and look over them ourselves.
The doctor had those faxed over from the hospital since they had only been looking at electronic
copies. When we were leaving the doctor's office and standing in the lobby the doctor was
handed the hard copy results from a nurse and proceeded to scan them over before he gave them
to us. All of a sudden he stopped and began to focus intently on something he saw, after about
30 seconds of him pausing then cursing then pausing then cursing we finally spoke up and asked
the obvious, "Is that a good or bad curse?" It turns out that our results were misread (possibly an
overall misdiagnosis, will get to that in a moment) and that Sarah's ANA, SMA and AMA results
are all negative! Basically those 3 factors are the driving force behind the disease Autoimmune
Hepatitis (AIH). We proceeded to ask him what that meant and he stated that "Well, everything
we just talked about for the last 30 minutes in my office is now null." He also was not sure as
to whether officially undiagnose Sarah or what to do and was already running behind in his
appointments by 1.5 hours. Therefore, we left there extremely confused and not sure what to do
except to Praise God in the interim.
However, Sarah still has extremely high liver enzyme levels at 1375 when the average person
is at 40 and his average liver patients have levels around 750. She is currently on a medication
that appears to be bringing her back to normal, but we won't know for sure until her latest round
of blood tests come back in. The doctors are completely flustered with her condition in light
of the discovery with the test results mentioned above. They feel that to get a more complete
idea of her condition they want to perform a liver biopsy which has a potential for causing more
complications. This would be scheduled for later next week.
At this point we must Thank all of you for your prayers! We know that so many of you are
praying for immediate healing (as we are as well) and many of you were even praying for a
misdiagnosis, which appears (we aren't sure quite yet) to have happened! God has already
showed us so much through this process and we continue to feel His peace over the situation and
are seeing the results of your prayers right before our eyes! Sarah seems to be tons better each
day she is on this medication and her nausea and stomach pains seem to be non-existent. Praise
God for that as well! Please continue to pray for wisdom upon the doctors as well as discernment
on our part for this liver biopsy. Please continue to pray that our eyes would remain focused on
God and opened to what he is showing us through this process whether it results in our favor or
not. Thanks Again!
God is so faithful!
Trevor
Date: 4/5/2010
Hello Everybody,
Once again I must start with THANKING all of you for your consistent prayers as they have
been more then evident in our current situation.
We had a small delay in discovering new news about Sarah from when we had originally thought
since one of our doctors had to reschedule an appointment which pushed everything back. Our
current "itinerary" is to have a meeting today (which we did) with Sarah's original doctor to
understand the variables associated with her unknown condition; this doctor is in favor of Sarah
undergoing a liver biopsy. In light of risks and complications that exist with that procedure we
have another appointment scheduled for Wednesday to receive a second opinion. We then have
the liver biopsy scheduled for this Friday depending upon what we learn and decide.
Our appointment today was very informative and helped us understand more clearly the
reasoning behind a liver biopsy and the benefits associated with it. We were also able to review
Sarah's most recent set of blood work which was encouraging to us since her levels had dropped
dramatically since the last tests, which was extremely encouraging! However, the doctor felt that
in light of the abnormally high dosage of medication that she is on he expected her levels to fall
more closely to the "normal" range. With this being the case he ordered some more blood work
and has decided that if her levels have not dropped into the category of "normal" he would want
to perform the liver biopsy (which we should know by Wednesday evening). At this point we
tend to agree with his position and current assessment.
Therefore, we are currently praying that God continues to heal Sarah during these next two days
so that the blood work returns signs of all levels resting at their normal state and thereby
allowing Sarah to wean off her medication even more. If this were the case we would have to
continue to monitor her levels as she began to reduce her medication as many times some of the
diseases associated with her condition will surface in later stages.
We are very encouraged with how much God has already shown both of us through this process
and are excited to see how He will use this in the future as He carries us through. He has truly
blessed us more than we can begin to understand and has plans for us greater then we can
imagine. Please continue to pray for healing upon Sarah as the doctors don't know how much her
medication has masked the actual seriousness of her condition. More importantly, please
continue to pray that our eyes would remain fixed upon Him and that we would not let ourselves
be consumed and divided by the worries heavily looming over us.
I must say how awesome God's Word has been in it's ability provide comfort in times like these.
Sarah has found so much of that in Psalm 31. Some verses that have touched her within this
psalm are:
v1-2 "In you, O Lord, I have taken refuge; let me never be put to shame; deliver me in your
righteousness. Turn your ear to me, come quickly to my rescue; be my rock of refuge, a strong
fortress to save me." v5-7 "Into your hands I commit my spirit; redeem me, O Lord, the God of
truth... I trust in the Lord. I will be glad and rejoice in your love, for you saw my affliction and
knew the anguish of my soul." v9 "Be merciful to me, O Lord, for I am in distress; my eyes grow
weak with sorrow, my soul and my body with grief." v14-16 "But I trust in you, O Lord; I
say, 'You are my God.' My times are in your hands... Let your face shine on your servant; save
me in your unfailing love." v19 "How great is your goodness, which you have stored up for
those who fear you" v21 "Praise be to the Lord, for he showed his wonderful love to me"
v24 "Be strong and take heart, all you who hope in the Lord."
Trevor
Date: 4/8/2010
Hey Everyone,
At this point we still have not received the additional test results back from the blood work even
though we expected them to be in on Wednesday. However, based upon the 2nd opinion from
the other doctor as well as discussions we had with both doctors we feel that the next best step
is to follow through with the liver biopsy (scheduled for tomorrow morning, Friday, at 9am).
Please be praying that this procedure is successful in 2 ways: 1) No additional complications are
encountered and all risks associated with the procedure don't come to fruition 2) That the test
would be able to produce useful results that lead to an understanding for the best way to treat
Sarah's condition. Many times these results can be "non-specific" since the analysis is masked by
the medication currently being ingested.
In light of a longer turn around for test results from the biopsy we are told not to expect results
back until the 19th. I will definitely inform everyone at that time what the situation has evolved
into. Please also be praying for our thoughts and focus to be centered around Christ as it becomes
increasingly harder to remain concentrated on God in light of the information that this test could
reveal. Thanks again for your continued prayers, we are so blessed to have all of you in our life.
Trevor
Date: 4/17/2010
Hi Everyone,
Sarah and I were both very excited when we heard that her liver biopsy results had come in
earlier then expected which allowed us to go and discuss the conclusions with the doctor this past
Friday. The possibilities that could be expected from the biopsy was the ruling out of multiple
extremely uncommon liver conditions as well as a potential official diagnosis of AIH (auto
immune hepatitis). There was also the possibility that the test could come back non-specific,
meaning it can't confirm or deny AIH either way.
Overall, Sarah and I were very encouraged with the outcome. All of the results for the more
abnormal conditions were all negative and the test for AIH was non-specific! This news was
very exciting and the best we could have hoped for since the liver biopsy can't confirm the
absence of AIH. They did mention that her condition/symptoms could allude to a late onset of
AIH, but that is merely speculation.
In the midst of this current information we are so grateful for how God continues to wrap
His arms around the situation and provide us with an overwhelming sense of peace. The
doctors are still baffled and don't know how to specifically treat her, but continue to prescribe
medication meant to reduce liver inflammation and then sustain it within the proper levels. God
has continued to show and teach Sarah and I so much about our dependence upon him while
impacting us more then we ever could have known. We have even found ourselves on multiple
occasions thanking Him for His kindness to us during this time and even for the condition itself
in light of way he has transformed our lives.
Please continue to be praying for God's hands to remain evident in this situation and guide
us as we desire to seek out His will. We have some new appointments in place with the chief
hepatologist at John Hopkins for April 30th in order to get more eyes on her perplexing condition
and to physically study the liver biopsy sample.
Thank you so much for your ceaseless prayers, kindness and thoughts! God is SO GREAT!
Trevor
Date: 5/1/2010
Hey Everyone,
Sarah and I were able to make it to our appointment this past Friday and were very pleased with
the hepatolgist we met with. He seemed to have a broad range of knowledge on the topic and an
encouraging interest in Sarah. After reviewing our recent medical history he proceeded to inform
us that there is no way of knowing at this point whether or not she has AIH. Therefore, he has
directed us to continue to wean off of the medication Sarah is currently on (which we are very
grateful for due to the side effects) while closely monitoring her blood work to see how her body
reacts. He explained that as we reduce the medication and if another flare up of Sarah's liver
occurs they will be able to diagnose AIH (there will be a little more to it, but that is essentially
his statement). However, if we are eventually able to take her completely off the medication and
no flare ups occur they will diagnose her with an acute idopathic hepatitis (idopathic basically
means "we don't know" or "no identifiable cause"). This would be the best case scenario.
The doctor expressed that he feels she will at some point during the medication reduction have
a minor flare up which will lead to the diagnosis of AIH since idopathic hepatitis in conjunction
with Sarah's levels is not very common at all. Regardless, we are continuing to hand this over
to God as He has been so faithful to us already throughout this entire process. We are praying
that it would please God to provide 100% healing to Sarah as we begin this new phase with her
condition. However, if the "best case" does not occur we will remain satisfied knowing that God
has incredible plans for us as He has already used this situation for SO MUCH GOOD in our
lives leaving us with 100% trust in the His path for us as we move forward.
Thank you everyone for all of your continued prayers, encouragement, love and support. We are
truly thankful that God has placed you in our lives and we pray that God continues to use this
situation to grow our hearts more and more each day. I don't plan to continue to bombard you
with more e-mails going forward, but will keep you informed if any new major events take place.
Thanks again...
Love Trevor & Sarah
Date: 6/13/2010
Hi Everyone,
In my latest note to everyone a month back I had mentioned we would hold off on any updates
until some more significant information arose. With that being said Sarah had a follow up
appointment at Hopkins this past Friday. You may remember from the last e-mail that Sarah
was continuing to reduce her medication in small increments in order that they could identify
her tolerance level (if any). The doctors expected that at some point she would flare back up
(possibly around the 3mg to 5mg range) at which time she would be diagnosed with AIH.
Therefore, every two weeks Sarah has reduced her medication beginning at 60gm and now down
to 10mg as of this past Friday with regular blood tests in between to monitor her levels.
When we arrived at Hopkins Sarah's latest blood test results had just arrived from the previous
Monday at which point the nurse practitioner had come in to share those with us. To our surprise
and dismay the liver enzyme levels had risen outside of the normal/safe range and her liver was
inflamed once again. This was quite a setback to hear as everything had been going so well for
weeks on end with blood test after blood test showing completely normal levels. After the nurse
practitioner had left to go retrieve the doctor Sarah and I took a moment to debrief and lift this
up to the Lord. We knew this could be a potential outcome, but reality is much different then
scenario discussion. Strangely enough we instantly felt Christ's peace over the situation as we
began to let the news sink in. The doctor arrived a short time later to discuss the significance
as well as the forward plan to increase her dosage back up to 20mg (with more undesired side
affects) and proceed to keep her on this drug for the next year or so before switching to another
long term drug alternative (also with unpleasant side affects).
After we had finished talking and the doctor was about to leave I had wanted confirmation from
him that this meant she was now diagnosed with AIH based upon his statements from our last
appointment. He paused and proceeded to ask some questions to his nurse about some other
levels on Sarah's past test results over the recent 2 months. Following each question about a
specific test or level all of the answers were "negative". He stepped back and took a seat in the
chair to do some additional thinking. He asked Sarah if she had taken anything recently; we
responded with yes as she had resumed taking some prior medication prescribed for a separate
issue (which we had previously informed him of in the past). After some additional thought he
lifted his head in an epiphany and said "That is it! I have seen this before!" You are allergic to
the base drug in that medication which is causing your liver to become inflamed and, therefore,
every other test is negative. He continued to explain that we were no longer to proceed back up
to 20mg amount, rather hold at 10mg without taking the other medication and then we would
proceed to continue to wean off her steroids from there. PRAISE JESUS as this was such an
incredible answer to prayer! Although this is not 100% for sure at this point we are very excited
about the possibility of this being the key driver for the entire situation! A quick google search
on the the base drug and the word "hepatitis" instantly returned numerous results of Sarah's
medication creating simulation AIH (giving us additional hope). We are still so thankful for how
God continues to walk us through this intense situation while not only providing healing, but also
answers!
We are continuing to pray that this is the true cause of her medical issues as well as rejoice
in Christ's powerful hand in the situation. Thank you everyone for your continued prayers,
compassion and support on us over this situation!
-Trevor-
Date: 11/24/2010
Hi Everyone,
It has been quite some time since there have been any updates in regards to Sarah’s health as we
expected her to continue down the path of full recovery. However, recently a few issues have
arose that I felt would be important to share and ask for continued prayers. I apologize for the
long note, but felt it necessary to try and bring everyone up to speed; don’t feel as if you need to
read everything, once again I apologize.
In my last e-mail back in mid June I touched on the optimism that we had discovered the cause
of her initial hepatitis being induced from a drug she was previously prescribed. We currently are
down to 3mg (from 60mg) of prednisone with an extremely high degree of confidence that it was
a drug-induced hepatitis! This is even more exciting since there were significant concerns that
the drug caused a chronic hepatitis given the time period she was on it, so we praise God for his
healing hand!
Unfortunately, dating back to September Sarah started to enter into a new phase of mysterious
complications. Beginning around 9-10pm severe chest and abdominal pain would set in that
often resulted in tears followed by a series of overbearing chills and shakes which lead into a
fever that would climb two degrees in as little as 30 minutes leveling off around 102 to 102.5
and then concluding with strenuous night sweats around 4-5am leaving her exhausted for the
day ahead. Strangely enough, other then being depleted of rest from the night before, Sarah felt
entirely normal throughout the day with no temperature or any other symptoms until 9pm the
next night. This pattern continued on for 30 consecutive days at which point symptoms became
worse and the fevers rose to around 103 with night sweats worsening even further. As of 3
weeks ago the fevers started to reach 103.5 which caused alarm amongst her doctors and forward
thinking on possible hospitalization. When the fevers started to reach 104 as of last week they
insisted on immediate hospitalization, which resulted in Sarah’s admittance to Johns Hopkins
this past Friday night where she currently is at this time.
Over the past 55 days of consecutive fevers and sleepless nights we have seen multiple
specialists at George Washington and other area physicians roughly 2-3 times a week. We
seem to have baffled all doctors we have encountered; and the past 5 days at Hopkins have not
seemed to differentiate from that path even though we have received top notch care at all hours
of the night J. As of this point they don’t have much to go on in light of her current puzzling
symptoms and lack of positive test results. Furthermore, as Sarah and I have been praying
throughout this complication we felt it necessary to move out of our current basement apartment
and into a new location in order to remove any potential environmental concerns related to our
previous living quarters and limit additional variables.
First and foremost we must say that God has been absolutely incredible throughout this entire
journey. We have more then felt His peace and direction as we have traveled the many ups and
downs and crazy turns along the way. We have even encountered numerous opportunities to
praise Him for many wonderfully orchestrated events that resulted in frequent victories within
various circumstances. We also give Him praise for continued negative test results that have
ruled out many frightening conditions including concerns around potential cancers. Although it
has not been easy we have found such strength in the Psalms as well as the book of James as we
submit this trial and difficulty up to the Lord. It is so nice to know that we have a Savior who
can identify with our pain and discouragement not simply because He is all knowing, but more
importantly because He walked in our shoes and bore the ultimate wrath on the cross. We are so
thankful we can turn to Him at such a time as this.
At this point today we are waiting on some final test results that could allow for Sarah to be
discharged and us to visit family over the Thanksgiving holiday should it fall in our favor.
They may have us come back next week to be re-admitted for more tests depending upon their
suspicions, but it will be certainly nice to get out and enjoy some fresh air in the mean time if
possible. We CAN’T thank all of you enough for your continued prayers, support, helping hands
and the many sacrifices you have made for us during this time. THANK YOU!
Love Trevor & Sarah
Date: 11/25/2010
Quick update...Sarah was finally able to get released from the Hospital late this evening! This is
great news since they determined the final test results to be negative for a very serious and rare
disease which they were currently investigating. Nonetheless, they were hoping for a little more
clarity on the test and will be having Sarah return next week for more out patient tests and doctor
visits as they continue to look into her case and hopefully reach a diagnosis. Thanks again for
your continued prayers and Thanksgiving offers! Have a wonderful Thanksgiving!!
Trevor
Monday, February 28, 2011
Morning has come....
Well Hello, faithful family, friends and prayer warriors. It’s actually me, Sarah, this is the first email in a long journey that I have actually written. I am blessed to have such an amazing husband who has kept everyone updated about my well being over the last year…yes you heard me, YEAR. It’s been a year since my misdiagnosis with autoimmune hepatitis, just several days after St. Patrick’s Day 2010. I’m writing to let you know that this long night in my life is finally over and morning has arrived. Praise be to you Jesus! There have been glimpses of light the last year but the sun is shining now. I have been FEVER FREE for almost two weeks. Psalm 30:3 “weeping may stay for the night, but rejoicing comes in the morning.”
I am sure some of you know that my internist has been the “steering wheel” through this whole process. She wrote a huge proposal for me to get into the National Institute of Health (NIH). I got a letter from the NIH last week with a note back saying they needed my liver biopsy sample and that I was being considered for acceptance into the “center for undiagnosed diseases.” That title makes me laugh, that’s how puzzling I am I guess. After seeing over 31 of the nation’s best doctors at Georgetown University, George Washington University and Johns Hopkins University the only doctor that knows what happened to me is the Great Physician. I find it even more comforting to know that God is the only one who knows and probably will ever know why I was sick for so long.
Throughout my illness I found great comfort in journaling my trials and thoughts along the way. This past January I was cycling through some of my previous entries in an attempt to find comfort in a series of fevers and abdominal pains that had re-surfaced; let me take you back to March 27, 2010 several days after I was diagnosed with AIH while having no clue of the incredible journey the Lord was going to take me on. “I pray that I continue to stump the doctors. Lord you have caused my doctors to be stumped and I pray for supernatural healing that only you can provide, no medicine…no doctor. Lord you are the ultimate surgeon and doctor you know every minute detail about my body and I praise you for that Lord.”
When I stumbled upon this particular entry I was completely shocked, as I never even remember writing it. I would certainly have to say that the Lord answered my prayer! Wow how amazing! Psalm 20:1 “May the Lord answer you when you are in distress, may the name of the God of Jacob protect you.” Then in Psalm 21:2-6 “You have granted him the desire of his heart, and have not withheld the request of his lips. You welcome him with rich blessings and placed a crown of pure gold on his head. He asked you for life, and you gave it to him, length of days, forever and ever. Through the victories you gave, his glory is great; you have bestowed on him splendor and majesty. Surely you have granted him eternal blessings and made him glad with the joy of your presence.”
In no way has this past year gone according to my time frame, but rather it’s been God’s timing; His perfect timing. “As for God his way is perfect.” Psalm 18:30; my life’s new theme verse.
Thank you again for all your prayers of healing and strength, God is most certainly faithful!
Sarah
Sarah
