May 01, 2011
5/1/2011 a sort of intro created when I created my account.
Grandpa is broken.
While I'm not a fan of social media I plan on using this media and YouTube to share a laugh or two, communicate with and/or advise/help sufferers of HCV related treatment (rtx), post treatment (ptx), sides of rtx and ptx that 'should resolve', what happens if you have normal liver panels with regards to MELD, even if you've been diagnosed with mild HE, etc. My experience is not as a healthcare professional but as someone who's run the gauntlet of physical and emotional related hurdles and roadblocks. I've decided to publish something somewhere and this seems like a good enough place for that. HCV, the sides that 'should resolve', life after treatment when your no longer on their radar.
More memories for later:
The one thing in the past decade that feels like a win is that I've found an answer to the brain fog, loss of memory (I mean real loss that's frightning), loss of cognitive skills (special testing done by my GI doc who's a genius in the area of HE), muscle mass and waisting (I have no butt and my legs are looking like sticks these days while my stomach protrudes most days) and have been diagnosed with mild Hepatic Encephalopothy that may be related to shunting of vessels around the liver, or to my cirrhosis and diabetes cofactors. My specialist in HE treated me with Flagyl and now Rifiximin and it has made a difference but my cognitive skills lost to date can not be reversed.
I give him an A for effort in increasing my day to day quality of life and the system an F for not allowing me a transplant, and for still using an obsolete and incorrect (by most professionals in the GI field today if they will admit it) liver blood test panel to compute a MELD score which gets you onto the transplant list. The HE doesn't matter, the sarcoidosis effects the eligibility it seems worse than had we let it alone, learned to coexist with the HCV until liver failure, hoped and prayed for the transplant, fought the dragon (HCV as it's known in the community) with a new, healthy and strong liver.
The history. In late 2000 when investigating what turned out to be diabetes (I was 50 lbs overweight which didn't help) and a flag was raised when the ALT/AST (liver enzymes) levels where out of this world. I was subsequently tested and diagnosed with HCV type 3 genotype 3A, a most curable strain we were told and the papers and evidence to date we researched suggested just that. BTW, the source resolved to vaccinations received when entering the USN in 1976 but no service connected treatment or hospital admission (which seems to preclude one from receiving benefits).
A biopsy in early 2001 confirmed grade 2 stage 4 cirrhosis. We were told my liver was 'compensated', i.e. still working, however it showed signs of being 'near decompensation (not working) due to the typical blood tests and the chemistry revealed being a bit high or low in some areas, my cirrhosis would progress, the liver would likely fail by 2006. And we were told that without rtx, HCV still active, I would most likely not be eligible for a transplant we elected tx of course. Fight the good fight.
Long short is that we did the 24 weeks and relapsed 6 weeks ptx. So we did the long fight, 5 months ptx I resumed treatment for 48 weeks and am undetected still today. All is well, right?
Nothing could be further from the truth I'm afraid. The sides they said should resolve didn't. During the second round I suffered severe anemia, autoimmune related issues related to sarcoidosis (elevated white and lymphocyte counts and pronounced hylar lymph involvement) that my MD at the time said where 'clinically irrelevant', go figure.
Well, I said short..so here we are some 9 years later still suffering with autoimmune and diagnosed with sarcoidosis (a side that's 'resolves in most treated patients' in the form of autoimmune and lymph involvement, a 4mm nodule in the left lung which has grown to 7mm that no one seems to understand or be able to treat. IMHO it stems back to the hospital admission for breathing difficulty while in the 48 week rtx, enlarged hylar lymph, etc., the one the MD said is 'clinically irrelavant'. We have some of the worlds best healthcare 'they say' here in Cleveland, Ohio, but if your not in treatment forget it, your not on the radar. If you ask you'll be told, theres no available information or treatment on the sides that 'should resolve' like sarcoidosis or the impact on autoimmune or other organs which may be effected affecting overall health just a black hole and 'I don't know' or 'I only treat the liver' or..you get the idea, where the sarcoidosis or sides which didn't resolve after 9 years takes us we take day by day.
And blood tests still ranged as normal, some high range chemistry, some low, still elevated white and lymphocyte counts, still feel like crap most days, yet thankful for each day. So tell me, tell my wife, children, grandchildren, the system isn't broken, grandpa is...