One step forward and two steps back

The good news is my liver counts are PERFECT! They went up (which is not good) when I was hospitalized in March but are now of a normal healthy liver.  I had a clinic visit on Friday and it was another great visit. Joe and I enjoyed the city after the clinic appointment and even went to Giants game. I went shopping and treated myself to a new pair of shoes to celebrate my perfect liver counts. ( I wonder when I get to stop celebrating with shopping... I think never!) It was such a happy day and even felt normal again! Having such a great day made me feel like I took some major steps forward in my recovery.

Then yesterday, my steps forward fell backwards. I did my blood work in the morning like usual. I did some shopping and was very excited to meet a girl I knew in college who also received a liver transplant in 2009. Our dinner was great, it was so nice to talk to someone my age who knows exactly what I have and am going through and I know we will have many more dinners in our future. Our dinner would have been better but a phone call put a damper on it. The phone call was from the on-call liver transplant Doctor at CPMC. My lab contacted him since my Neutrophil counts plummeted to 76 and that is way below the normal range of 1500-6000!! They were 978 last week so they really took a big drop. During my appointment on Friday my transplant Doctor increased my Valcyte which is a drug that is used to reduce the risk of getting a virus called CMV. Before my transplant I have never heard of CMV but now its a word I despise. CMV is a very common virus that 7 out of 10 people test positive for. I tested positive and so did my donor so I have an extra risk of activating the virus and it can hurt my liver and damage my organs. Great thing they have a drug for it, right? WRONG!! The drug kills your white blood cells especially the neutrophil cells which protect you from infections. My Doctor was proactive knowing it would hurt my WB count so I was instructed to give myself a neutropen shot last week which helps my bone marrow produce WB cells so I was very shocked to hear it was only at 76.

With a neutrophil count so low I had an increased risk of any infection causing septic shock so they wanted to admit me to the hospital. We got to SF at 10:30pm and they tested me for just about every infection possible. I am happy to report that all tests came back negative so I was released today.The neutropen shot last night increased my count to 200 and they gave me another one before I left. My Doctors now have to decide what risk they want to take.... low WBC and keep me on Valcyte or risk CMV and take me off of it. I should find out tomorrow what the geniuses decide. 

So I am going to have a party all week.... a pity party for myself! My my legs are killing me from the neutropen shots, my hair is falling out from my Prograf (anti-rejection med) and I am on lock down at home until my WB counts goes up. I know it could be worse and I am happy I am alive and my liver counts are perfect but am giving myself permission to be dramatic, eat plenty of ice cream and do some online shopping!