hi there! Brand new here. I decided it was time to get some more support now that I have been placed on the transplant list. I was diagnosed with end stage liver disease 3 years ago, consisting of Fatty Liver, Hepatitis C and Alcoholic cirrhosis. I have been sober nearly 7 years, but did not get sick until 3 and a half years later. Currently I am a patient at Addenbrookes Hospital and am very happy with the treatment I am receiving there..not to mention all the wonderful support from the staff there on C4 and clinic 12.
A Month ago I was blessed to be offered the chance to go on the new drug, the Harvoni. Prior to that, I could not take anything, as by the time they caught my illness, I already had acsites and was to sick for interferon. I am a Genome type 1 and much to my delight and happiness, after one month of taking the medication, my viral load is showing no signs of Hepatitis C. It's my understanding it turns it off basically. Also, the medication has 0 ZERO side effects..unbelievable!
Although this will not save my liver, it will mean that if I am blessed enough to get a new liver, then the new one will not get infected by the disease.
Currently I go in for drains every 2 weeks or so, where they take between 18 to 21 liters of fluid. It's weird, because, underneath the fluid, I have gotten too skinny. (My dietician is always mad because I no longer have an appetite..lol) So, 2 weeks out of the month I look pregnant with twins, the other two, I look too thin.
I also deal with what I am guessing is normal for everyone..a lot of pain, for which I take medication, and exhaustion. I either sleep 12 to 18 hours a day, or not at all! I am able to walk in my home, but use a wheelchair outside of that.
But, I am so grateful for the care I am getting. Everyone at Cambridge is just amazing! Recently I was in hospital for a week, due to a staff infection that got into my permanent pic line..and I could not believe all the visitors I had..nurses, doctors, the transplant folks..even on their day off, my specialist from Clinic, Tracy, came to visit me..I felt like a rock star..lol. And I am grateful for my life..I am so blessed, as many people die from alcoholism while still drinking..at least I was given the chance to get sober and start becoming the person I was meant to be!
I have an amazing partner, 2 lovely children in the US and a little 6 month old grandson, whom I just adore..I cannot believe I lived long enough to see him..I Skype with them weekly!
I look forward to learning about everyone and hopefully adding good things to the conversations. I'm still learning as I go..
thanks for reading my long hullo!
cheering everyone on!