“To be kept at bay, to be even drowned in a pool of blood, tears and the like, is truly a disease let alone such that of an ordeal with too damn much!
Kept at bay with what? An auto immune disease, of very high danger and fatality percentages! The name of this life’s back stabber is called: “Primary Sclerosing Cholangitis” or “PSC” for short. Why is it so incredibly dangerous and filled with such fear in the medical community, and even in my own case? Basically it is a disease again, by way of “Auto Immune Disease, and is incredibly a massive bully far too often, which has killed many and some of them (friends, PSC,ers we call one another, a rare community with small number cases) I’ve known and it’s never easy, “Never…” It ranges in severity or forgiveness if you will from case to case! However, you can go from stage 1-4 or liver failure and death at any moment in time. It’s always a worry back in my mind, but I have to brush it aside to live…
How many have this disease? I can’t give an exact figure, yet when I was diagnosed, at the time in the best physical shape of my life. I had read somewhere that only 6,000 cases existed or were known! It’s no joke that this auto immune disease is very, very, “extremely rare!” As well it deserves more attention, many have had the rug pulled from under their treatment, because their insurance is taken? After so many operations for me, I’ve had my max dose… Only so many times can you go through hell? Also, not enough really truly care I feel, or pay mind and Dr.’s even seem to blow you off at times… This is documented within PSC support. I’m certain if anyone had it, no doubt it would be investigated tenaciously? It’s a disease of chronic debilitating pain, unknown largely, as it is rarely researched and misunderstood vastly! Crucial is it to be documented case to case as they differ (each case). Too many heart breaking hoops to jump through, all for help??? Someone to listen, it’s not just cancer that kills, and many other diseases fit this profile! It is a scary fiend to share your life with!
I try daily to be at my best in spite of this garbage disease, this baneful foe… I love to consume my diet in life with writing, altruistic qualities, and doing my best? In the hard version I’ve been handed off and so many friends sharing PSC? How long have I been living with this fiendish cancer of a disease; well as I’d stated I was in the best shape of my life! When all of a sudden I started getting sick, feeling horrible, abhorrent really and just unexplained! At the young age of 30 or thereabouts, which I am now 6 plus years post; most doctors give a patient with this disease no longer to live than ten years or less… My specialist had once stated you, “Rich” are very fortunate, as we have caught this disease early. Stating this is why you are alive and well friend! A vast and large, prolific number, begin their struggle and fight with PSC at a very advanced disease placement! Which sadly is a very fatal and highly carcinogenic disease? I am supposed to be checked for “Cholangiocarcinoma” every 3 months! Do entertain it? After hospitalizations, near death experiences, I am jaded. Can I be blamed? I wouldn’t wish it on my worst enemy…
Many hospital visits, stays and the like; have been lived by my person? I’ve undergone, so much bullshit and hardships related to my disease or caused by it… I’ve gone pretty obviously down… I’ve was hospitalized once after my initial operation. Due to severe complications, which lead to a life threatening small bowel and liver infection! Where I was under extreme care and right after my disease, of newly diagnosed liver PSC by way of ERCP!
The past year, of 2010 alone, I was hospitalized 4 times and 2 of the 4 times, I was knocking on death’s door… My last admission was frightful; I feared I’d not return home… I was admitted by way of: “was delivered if you will by way of ambulance,” and a caravan of others, whom had me into the ER within “5 minutes.” Which by way of car, normally took around 30 minutes? I had not passed out, yet had dropped my blood pressure; as well-being in horrible agonizing pain! I could hear them; the “first responders, or medics in the ambulance,” however barely, I mean barely could I Respond. Due to severe Anemia and shock from the PSC… Again a misunderstood disease, I feel out of ignorance by some, and this shouldn’t happen, it shouldn’t be overlooked!
Upon being admitted into the largest hospital near me. I was literally in full-blown shock for two days easily, once some of their darn medicines kicked in. I do recall some now as it was extremely hard and painful as hell! I had even prayed at that point, Hey “Big Man” Please don’t let me suffer in my pain, and feel in a way I was answered… At least by someone who watched over me (PSC kills easily)? One of my nurses, Jen, I will refer to her, out of respect and in anonymity. She was the most caring, altruistic Nurse and gal I’ve ever had to treat me and well! I mean very, (very well she did so) and made me feel so damn awesome and that someone gave a damn about me! Feeling so truly cared for… She was gorgeous as well, (wow) inside out which is rare in medicine! Never forgotten this blissful angel…——-
They only knew vague symptoms upon my arrival, such as internal bleeding, throwing up nonstop for around 2 to 3 days… Even in spite of receiving every medication under the sun for stopping these ugly and painful symptoms! Throwing up blood and completely clear bile and feeling as battery acid dumped down your throat, and internal system. Thus what lead to my very grim outlook and hampering symptoms! PSC of my liver as it has many often fatal side effects on its own, such as my 2-3 day’s throwing up nothing but blood, and bile and barely knowing up from down… Water, even ice, especially any food would refuse staying down (nothing for days)! All nutrients delivered through IV for several days or more, and I was so sick I barely knew what was going on???
They were stumped a bit, but the doctors on my case were not qualified to diagnose my stacks of symptoms! They were just not familiar with PSC or ERCP’s (liver scopes/operations on bile ducts) or my diseases complications? A doctor “right in front of me, asked another what is PSC or ERCP’s (not comforting at all)?” Also, a vast, I mean vast, vast number of ER doctors and even good, reputable doctors, have to ask what is PSC, what are LFT’s (liver function tests, mandatory, before you’re too far gone)? “Bile duct operations thus far, I’ve undergone 12 or more in attempt to fix; undo whatever they can or will?” Which too oft at times is not much fixed or salvaged? The only known cure, which often is prolonging life, as the disease can come back even more aggressive! Is a “liver transplant or donor of that/this organ which is a worthy gift, to be One who Gives Life…” “I have the utmost respect for donors; “God Bless Them All For Certain!” Friends I know now with PSC, and one who recently had a transplant. “Whom prior, was in very seriously bad condition physically” and mentally as the disease wipes one to a bane… It can kill at any moment unannounced; everyone takes it differently (immune systems differ)?
Anyhow, many, many patients with PSC even if not cured by way of Organ donor transplant Successfully (without remission) as no cure is known now? Extends their life and even quality of life for commonly, vast years to come… I feel very glad to know my friend is okay and doing much better after her transplant! It’s something I fear for myself, or bile duct cancer, and worsening of my bile ducts, not to be undone! Also it’s a disease, which I feel without, my soul; spirit would not be for the better. For I feel, I know I appreciate all so much more than prior in life…
All of you whom have even scanned my words, read my articles and the like? Even going so far to research PSC (THANKS) and even donate; to the PSC fund-raiser campaign! This can be done at: http://www.pscpartners.org/ and I will say in advance you can donate a dollar, 2, 5, 10, 20, even a large amount, if you wish? However even one dollar, 2 or five will be vastly, and so sincerely, adeptly thankful for by myself, and no doubt all involved in living with PSC! I also, wish to say to all of you! Not only do I just give a damn about myself or just think one disease takes us all the same as we all endure life’s bumps? I wish to leave you with a Buddhist Mantra! “Om Tare Tuttare Ture Mama Ayuh Punya Jñana Pustim Kuru Svaha) the “White Tara Mantra” associated with long life, insight, blessings……..——
Just hope and pray and always wish to educate even Dr.’s of the examples, side effects, dangers and foe I know all too well as others with me… We only, as others seek a cure if possible, as any other disease. Yet God knows I’d give my life to cure it all man, cure it all friends; warfare, disease, famine, hunger, despondency…
- Link Between Crohn’s and Liver Disease (everydayhealth.com)
- Who Gets Celiac Disease? (everydayhealth.com)
- When Is Surgery an Option for Liver Cancer? (everydayhealth.com)