UPDATE: Jenny was blessed by an angel donor and got a transplant. Scroll below.
Discover Jenny
My Diagnosis
I’m 53 years old and was very much caught off guard by a diagnosis of end stage liver disease in December 2022. I had been sick with the flu all of that month – cancelled all holiday activities and everyday was prepared to go to the hospital if I didn’t feel better. On the evening of December 28, I noticed my stomach was black and blue and my husband, Dave, took me to the hospital. I was diagnosed with cirrhosis of the liver. I was beside myself.
Dave and I went home that evening, shocked but optimistic. We were questioning each other how this had happened. I had been diagnosed with fatty liver disease a couple years prior, but my mother, one of my sisters and my brother all had fatty liver disease and no one that I recall at the time made it seem like a possible death sentence. I had a few other symptoms leading up to that time, but nothing that pointed directly to liver disease. For example, the summer leading up to this incident, I noticed red blotches on my skin. I showed them to many people and no one associated them with liver disease. It turned outs that with liver disease tiny veins can “leak” to the surface causing the blotches. I also experienced many occasions when I came close to or did not make it to the bathroom. I also had a loss of appetite but kept gaining weight.
In December I was put on medications and a special diet and told to follow up with the Starzl Transplantation Institute at UPMC. The team at UPMC is great and I know I am in good hands, but regardless I still need a liver – well a portion – of a healthy liver to save my life.
Jenny being optomistic in the outdoors
THANK YOU TO ALL WHO HAVE AND WILL HELP ME ALONG MY JOURNEY
Part of the Journey
The reality of it started to sink in, then within a month, following routine bloodwork, I was sent to the hospital due to high white blood cell count and I was admitted immediately where I spent the next month fighting for my life. In the hospital I had 8 liters of fluid removed from my body, I didn’t eat the entire time and was unable to get a feeding tube due to vareses. I was on oxygen and getting weaker and weaker. I made it through this and was fortunate to return home and with the help of in-home care and the support of my husband and family to build back my strength and get serious about finding a living liver donor and we continue to do so today.
Although I’m stable for now, my doctors would like me to get a transplant as soon as possible while I am still strong enough to handle the surgery and recovery. I experience constant tiredness, achiness, confusion and get weaker every day. I have my ups and downs but I try to keep busy as much as possible to stay active and mentally positive.
TRANSFORM MY LIFE AND YOURS - REGISTER TO DONATE TODAY!
Looking ahead
Looking ahead...
The journey so far has brought me many new experiences and emotions - both good and not so good. It's a tough road ahead and my life has changed in ways I didn't expect. Dealing with the disease is one thing - I have to find ways to stay motivated to exercise, eat healthy and keep up on my medications and doctor's appointments. Those are the physical and obvious things but still difficult to be strict with the guidelines. I've joined some Facebook groups that share great information and we all support one another and I have found these communities to be very helpful.
Just as difficult is dealing with the emational side of the disease, but it has also been the most rewarding. I've had more time than ever to focus on myself and get to understand "Me" and others in a way I haven't before. My husband tells me I'm an inspiration to him every day. I just know taking care of my mental health is just as important as my physical. I strive everyday to be grateful, positive, spiritual and loving. And, helping others is one of the best ways to heal and restore my well-being. I look forward to new experiences and doing more of the things I love like horse riding, nature walks, creative projects and anything else that brings me inner joy.
I hope and pray every day to find a donor - that one person who is willing to make the gift of life and who will be a match for me and to whom I will be forever grateful.
Check back often as I will continue to provide updates along the journey. God bless each of you with love, a positive and peaceful outlook and gratefulness in your hearts.
