It is difficult to remain optimistic: Another Set Back

So, the hematology thing pretty much did not provide any insights into the elevated RBC, hematocrit, and hemaglobin. I'm neither anemic nor do I have thessalemia minor as my former rheumatologist suspected. I came away from that entire experience (all two whopping months of it), with a new kidney diagnosis: renal parenchymal disease, which my nephrologist assures me doesn't change anything about my care plan etc. And I barely was able to take a breath and process this news, when the next new crisis presented itself.

As I might have indicated, or not, who knows, I'm so scattered these days, I've been sick. 

First, we spent a few days at Lake George, isolating in a cabin on the lake for a few days. We returned home on 4/16. On 4/17, I started to spike a fever which lasted four days. 

By day three, I had a COVID test, which came back negative. And my fever seemed to resolve on its own.

Eleven days (from the date of onset of the fever), I had my first shot of the Pfizer vaccination. 

Five days after the first shot, I started getting a wave of symptoms that seemed to intensify each day: brain fog, lethargy, nausea, diarrhea, and diffuse pain all throughout my abdomen.

By day three of the wave of symptoms, I had a video appointment with a doctor who NOT KNOWING A GOD DAMNED THING ABOUT ME, pretty much told me to power through, I suppose he thought I was dealing with food poisoning? I don't know. 

By day five of the wave of symptoms, I remembered I have a gastroenterologist, and I scheduled an appointment with him--which sadly was 10 days from that day.

5/11/21 I had the first appointment and the first round of blood tests were done. My liver enzymes were (for me) crazy high, same thing about my ESR and C-RP, and my GFR seemed to drop 10 points (according to my records I keep). Of course all this terrified me.

5/14/21 I went back in for round two of blood tests. A full pathogen panel was done, I was tested for HepA, HepB, HepC, Celiac, and a couple other tests for my liver and kidney. I would get messages throughout the day when the test results would hit the patient portal--and my gastroenterologist would make a note everything was normal.

5/21/21 I endured a CT scan with contrast, which with a couple minor comments, came back normal. It clearly said my liver was normal.

Between the test results coming back normal and the CT scan being normal, I started to dare to be uncharacteristically optimistic--that is, until yesterday when the results of the Fibrospect HCV test came back, and IMHO the results were alarming--the test indicates severe liver fibrosis.

I enjoy a glass of wine or even a cocktail from time to time, maybe 1-2 a week? If that? And then I could go weeks without a drink. And full disclosure, while we were away, I had a drink a day because "hey! I'm on vacation!"

Mind you, after my gastric bypass, all my liver enzymes and triglyceride levels were normal, and I had assurances that my fatty liver syndrome had reversed itself; however, not at any point in time did my ReproEndoGuy ever refer me out to a liver specialist--even after I tested positive for carrying the gene for Factor Five Leiden Mutation. I trusted everything was fine, and furthermore, I was never told to avoid alcohol entirely.

In the interim while all the tests were coming in to the patient portal piecemeal, I kept beating myself up, "Did I bring this on myself? Did I injure myself?" And then the Fibrospect HCV test came back, and I didn't know how to interpret it as it typically is a test for HepC patients to monitor their liver fibrosis. Despite my HepC results coming back negative, and not knowing what Fibrospect HCV was, I worried, "Do I have HepC?" And then I worried about if my husband now has HepC. 

5/26/21 Was the day I received the Fibrospect HCV results, and it also was the day of my follow up with my gastroenterologist (who, I might add, I wish were my internist as he is incredibly thorough). 

So I went to the appointment armed with page of questions typed up to make our appointment as efficient as possible--especially considering this doctor ALWAYS makes me (and everyone else) wait an hour or more, as his staff always seems to overbook him. 

I handed him his copy of the questions and one by one we went over the questions, and I annotated my printed copy of the questions.

As the questions went on, at one point he stopped me and said, "You DO know none of this is your fault, right?" And with that I started to cry. I said, "I can't even be relieved by that--I am now instantaneously ANGRY about it."

In 2011, I had a gastric bypass to lower my risks for diabetes and fatty liver. The threat of diabetes is now a thing of the past; however, this non alcoholic fatty liver disease was there lurking beneath the surface all this time. 

Who knows how long it has been there, silently damaging my liver? Was it from age 30 (when I was diagnosed with PCOS) until age 44 (when I finally had my bypass)? I'm now 52, so has it been 22 years it has been lurking under the radar and not one person saw fit to test me for liver fibrosis? Why bother doing a CT scan when, CLEARLY, the scan isn't refined enough to detect fibrosis? Why not an MRI?

I am sitting at my desk in my office typing this out and trying not to sob about the pointlessness of all of it: Seeing that fancy endocrinologist for my PCOS 4x a year for 14 years (not to mention the thousands of dollars spent)? Having my bypass? Trying to take care of myself (though granted I am not a health nut by any stretch of the definition). 

What is the point of all this vigilance if, in the end, my body will do what it will do? Even my bypass has failed me. I've maintained a 60 lb weight loss. The bypass failed me and I have failed my bypass. 

Perhaps the liver situation has been driving the elevated RBC, hematocrit, and hemaglobin. Perhaps this is why I am fatigued all the time. Even when I wake up after being compliant using my CPAP, I am listless and have no energy. Why should I bother anymore?

So. The plan:

6/14/21 I will undergo an upper endoscopy to see if there's any damage from after my bypass, which might be driving some of the abdominal pain--though some of the pain could be from adhesions from the surgery.

Thereafter, at some point, I will have to go to NYC for a liver biopsy--and the thought of this terrifies and angers me. 

I ended my day yesterday sobbing just thinking about what the hell is going on, and I started my day today with Maharajah saying to me, "Where the hell is Dr. F., when we need him?" And I started to sob selfishly that Dr. F., passed away in February of this year. I just dare to hope that the 14 years of being a patient, and in a way A STUDENT of his, learning about all these issues I have, has prepared me for whatever comes next.

I am scared.