Well his MRI of his liver got postponed because the machine broke down. It is rescheduled for the 20th of this month. I am praying the results are as good as his blood work has been. His hepatologist has decided to do his blood work once a month instead of weekly because he is doing so much better. 
The insurance company is reviewing the materials I sent to them. I am still hopeful they will overturn their decision about not covering his stay and tests at Cleveland Clinic. I still feel if it had not been for Cleveland, he would surely be dead… He was declining so quickly, I just don’t understand how they could even question his stay at Cleveland…
My husband is still taking the TDF and recovering. He has noticed some pain and even some swelling around his upper rib area on the right though? I am wondering if it is his gallbladder though and not his liver? I did read on his last ultrasound that they saw some swelling on his gallbladder, but no signs of stones? I’m hoping that is all it is and it isn’t the two “things” they noted on his liver… 
Hi Samantha,
Cholecystitis (gall bladder inflammation) is a rare extra-hepatic complication of highly aggressive acute HBV infection (which your husband certainly had). Based on your husbands’s ultrasound findings, this may be the cause of your husbands localized pain, which is simply and more evident now that his liver decompensation has corrected itself.
It is important to keep an eye on it and make sure his doctors are aware of these symptoms, but now that his acute HBV has been controlled it will most likely have a benign course and resolve over time. The MRI on Dec 20th will be informative.
Best regards,
Today another strange thing happened…he was just sitting, not exerting himself at all when he had some sort of chest pain. He said he felt his heart skip and then he felt dizzy.
He laid down for a few minutes and it passed. I checked his blood pressure, it was on the higher end of normal so we let it go.
Later in the evening it happened again. Again, no exertion, just sitting on the couch. This time he experienced a lot more pain. Again, he laid down and it passed.
He did say this has happened a couple times before today. He has never had any kind of heart issues. Could this be a side effect of the acute hepatitis or even the TDF meds?
He has an appointment with his regular Dr soon and I plan on bringing it up, but I haven’t read anything about hepB and heart problems, I was curious if there is a connection?
Dear SamanthaMech,
I am not aware of a connection between TDF or acute HBV and blood pressure or cardiac function. This will be important to discuss with your husbands doctor.
I didn’t think so either I searched all over this forum and couldn’t find anything, but I thought I would ask.
I am calling his Dr today to discuss it and see if he wants him to get an EKG or anything before his appointment.
Thank you for the quick response. 
So, got a letter back from the insurance company… We denied your claim m for appeal for acute hospital stay. Your appeal was reviewed by a medical director. They are board certified in family medicine. We looked at your records. We understand you had a problem with your liver you asked for a hospital stay to make you feel better. This request didn’t meet health plan rules.
For this to be approved you would have to have 1 or more of the following issues: you would have to have extra fluid in your belly this is called ascites. You would have to have very high levels in your blood levels. This is called high bilirubin that is causing a severe problem. You could have a problem with your stomache emptying. You could have an enlarged liver or could have in flamation of a gland in your belly called your pancreas. Based on my professional judgement, your request is not medically necessary. The records from your Dr did not show you had these problems. You did not have fluid in your belly or very high bilirubin causing severe health problems. Your bilirubin levels improved. You did not have an issue with your pancreas. You responded to initial treatment. Please talk to your doctor.
Is this not the most condescending shit you’ve ever read!!! He was jaundice, his Bili was 11, he was screaming in pain, puking, and could barely walk??? He was already diagnosed with hepB almost a month prior to his last visit to the ER and his blood work just kept getting worse weekly!!! Not one Dr in Norwalk did anything!!! If he wouldn’t have been transported to Cleveland and finally gotten antivirals, I’m sure he would have died! And yet the insurance company believes he had “belly problems” and didn’t need Cleveland clinic or his stay there??? Unbelievable!
I’m sorry to rant, but I am BEYOND pissed off! Now I have to try a state medical hearing… WTF! 
Hi @SamanthaMech ,
This IS beyond frustrating! This decision was with the information and records from the Cleveland Clinic to back up how serious this medical condition was?
@healthexperts , Is there any way that the Hep B Foundation can help with representation or backing about the medical condition if given access to the medical records?
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This whole thing just sounds so absurd and this sure sounds like a situation where medical experts in the specific arena of Hep B could help a David overcome a Goliath.
Fingers crossed,
-Paul
PuallyHBV,
In this case the response from the insurance company is either rendered by someone who has no experience with viral hepatitis and liver function in general or someone who has VERY incorrectly reviewed the case. In SamanthaMech’s case the basic presentation and clinical details of her husband’s progression at Norwalk which ultimately necessitated rescue at the Cleveland clinic(who just followed the basic guidelines on application of therapy in the case of acute HBV with hepatic decompensation) are quite clear cut.
Samantha, your frustration is VERY well founded. The response is decidedly not professional in nature. Hopefully the State Board will have some semblance of sanity.
Hi @availlant ,
All true and I get it. I am just hoping that another Goliath in this specialty would cause the insurance company’s medical director to reconsider their inappropriate decision or at least fear exposure and unwanted negative attention from a premier agency in the Hep B arena.
I don’t know if The Hep B Foundation does this type of representation but it sure would be nice if they fought for situations like this where, as you say, “(who just followed the basic guidelines on application of therapy in the case of acute HBV with hepatic decompensation)” should be standardly covered.
-Paul
I sent medical records from the ER he was at for THREE days as well as blood work results and clinical notes. I also sent them the records from his stay at Cleveland Clinic and a summery explanation of the timeline of his progression to being transported from one hospital to the next. The denial letter says he is board certified in Family Medicine…So other than basic knowledge and his obvious inability to read the records, they believe it was just a “belly” issue… 
I am going to make a phone call this afternoon and see what the steps are to a State Medical Hearing and I guess figure out if I need to find some sort of Lawyer to represent my claim? I totaled up one bill so far and it is over $14k, there are 3 others I haven’t gotten totaled yet
The response letter was SO unprofessional. I typed out that paragraph they sent us word for word… My husband read it and was furious. I am positive they never read a single document I sent them. They never once acknowledge the HepB, high Bili, the jaundice, nothing… I just can’t believe they can do this?
If the goal was to generally deny coverage, this would be one way to do it…
They covered everything else with the exception of that particular stay? In all of those things they covered, it had to mention HepB?
I did go back through the claims and I did find one other denied claim that we have not received any letters or information or even a bill for though and it was the actual blood work for the Hep tests? That dates back to October 13th? Are they just trying to ignore the HepB? So weird that we didn’t get a letter or a bill even from our local hospital for that?
Does anyone have any idea what to expect from a State medical Board hearing? Do I need a lawyer or a Doctor to explain my husbands condition?
Hi @SamanthaMech ,
Maybe you could contact The Hepatitis B Foundation directly and explain your situation. If they can’t represent you or the hepatitis case, then maybe they can at least guide you in a direction to get help.
https://www.hepb.org/contact-us/
-Paul
@SamanthaMech - This is a very frustrating situation, but not an unusual one. Unfortunately, you will be forced to advocate for yourself and your husband, and pull in his specialist to help, if you can. Very often, insurance companies deny and don’t expect people to have the energy to keep fighting. It is usually only through being persistent can you get these decisions overturned. I think your best course of action is to bring your husband’s specialist - the doctor who manages his hepatitis B - into the conversation. Most doctors have staff who are used to fighting with insurance companies on behalf of patients - and the doctor should be able to write a letter on your behalf. I don’t think a lawyer is necessary, at least not yet. If you want to chat more, feel free to email me directly at chari.cohen@hepb.org. Thanks - and good luck!
Samantha,
I’m glad Chari got in touch with you. She is likely the best resource for you on this!
You want the physicans from the second hospital which responded correctly to your husband’s acute hepatitis B infection.
Good luck!
He got the MRI of his liver. From what I can understand and “google”…it was good.
RESULT:
Liver: Normal morphology. Few subcentimeter T2 hyperintense lesions
demonstrating peripheral and progressive enhancement, compatible with
hemangiomas. For example, 0.9 cm segment 7 lesion (9:15) and 0.7 cm
segment 7/8 lesion (9:18, 25:25). These two lesions correlate with
hyperechoic lesions on ultrasound 10/31/2022. Additional smaller lesion
in segment 5/8 peripherally, likely an additional hemangioma.
Hepatic vasculature:
Portal venous system (splenic vein, main portal vein, left and right
anterior and right posterior portal vein branches): Patent.
Celiac trunk and SMA: Patent. No stenosis.
Hepatic artery: Patent. Conventional anatomy.
Hepatic veins: Patent.
Other findings:
Spleen: 13.0 cm (craniocaudally), borderline enlarged. Subcentimeter cyst
at the anterior margin of the spleen.
Mesentery/Peritoneum: No ascites. No mass.
Biliary: No bile duct dilation. Gallbladder is normal.
Pancreas: No solid mass or duct dilation. 0.3 cm cyst in the pancreatic
body, without suspicious features.
Adrenals: No mass.
Kidneys: Benign cysts. No solid mass. No hydronephrosis.
GI: No dilated bowel or wall thickening along imaged segments.
Lymph nodes: No abdominal lymphadenopathy.
Vasculature: Atherosclerotic disease present. No aneurysm.
Bones/Soft Tissues: No suspicious lesion.
Lower chest: Unremarkable.
HI Samamtha,
Looks good, spleen calming down from what was likely greater enlargement.
Liver hemangiomas are typically benign and present in ~20% of the population. Cysts in spleen and pancreas can also occur as we age and are typically benign.
Atherosclerosis is likely from smoking…
He sailed through the gauntlet of hepatic decompensation with out any residual organ damage according to this MRI.
Great news…
Thank you! I kinda figured you would understand those results way more than me. 
Now if I can just get the insurance company thing cleared up after the first of the year, it will be a complete trifecta!