Of course I don't always 'look great' but I try to! When I get hospitalized, it's a time when not a lot of people see me, so they don't know the struggles and effects of liver illness and my Pulmonary Arterial Hypertension.. what is that? I know you haven't heard of this before, but read about it here.
It started with swelling in the legs, the real causes of my illness until one specialist recommended I see a heart and lung doctor. Which I did, and decided to go up to Jefferson Hospital in Philadelphia as they have a great reputation and it was a recommendation from a local doctor in Linwood, NJ of mine.
My appointment for Jefferson, which I made a month in advance just happened to be the morning after Super Storm Sandy struck the East Coast and actually came ashore just near the area that I live. My husband and I started our drive for Jefferson in Philadelphia, not knowing if the appointment was still on or not, the area was battered with weather, and we were the only car virtually on the road at that early 6 AM hour heading westbound.
I had a biopsy that day at Jefferson, and a short time later, they told me the bad news. I had Stage 4 Liver cirrhosis. That is a very bad stage of this disease. Thoughts of treatment were in my head, my liver doctor at Jefferson said though with this Stage 4 condition of the liver, only a transplant would do. There was no other option. I asked about a transplant to my doctor at Jeff, and unfortunately, the way liver transplantation generally works is that the sickest of the sick generally get preference for available livers. The only way to get one is from a donor, and that donor is someone who has passed away from other causes.
All this news, and throughout my life I hardly, if ever, drank alcohol at all. It was cruel news, but it was something I was ready to do battle with.
I didn't share my medical condition with many people, only a few of my closest friends and family new of my illness. For a good number of months, I didn't get much sicker. Lately though, it's been much different for me.
In the last year, I've been hospitalized 10 times, with the longest stay being 30 days for one fo them back in April/May of 2017. This disease was starting to get the best of me.
Back to my story on the original diagnosis.. I didn't like the response I got from my doctor at Jefferson with what would happen next to me. All through this ordeal, normal life events happened to me and my husband. I was out of work, had spent all of 401K savings to live from my longtime job with Atlanticcare and things didn't look good. In the meantime, my husband was let go from his job back in August of 2013, a job that he had for 13 years selling auto parts. My lifeline of his benefits covering my illness came to an end. We were without healthcare benefits for about six weeks toward the end of 2013 but there was something called Obamacare that was to start up in January of 2014, and we were on board in the first month that it was offered. A miracle for us, as it's something that never existed before that in the USA, benefits that were exactly for people like us that at the time, my husband was permanently laid off from his job and I couldn't work do to being so sick all of the time.
I could go on with this story, it's been a struggle but the most important part is that I'm not giving up. And that's what makes me stronger, each day, in every way!
Thanks for you donation, if you make one, and thanks for a least reading this if you don't.