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!

3 months!!!

Happy 3 month liverversary to my new liver!!! I have named my liver...say hello to Laverne the liver. Laverne is doing good. Her counts went up during my last hospital stay but have started to come down. I had a clinic visit on Thursday as a follow up from my hospital admission and it was another good visit. My white blood count continued to stay steady. The Dr said it wasn't impressive but good enough at 1000 for me to be out in public. He would like to see it go to 2000 before I start celebrating. They continued to adjust my medicine and officially confirmed that my recovery is complicated and my body is difficult but what did they expect? I mean shouldn't they have known that since obviously I was an unusual case from the start..ha! I told them I just wanted to make sure they have job security and my case will keep their brains working!! I gained 3 pounds so they were happy but lied and told them I wasn't eating junk food. I guess I will stop eating my hot cheetos and sour patch kids and get back on the healthy diet...darn!

A great milestone of 3 months allowed me stop the medicine I had to swish and swallow four times a day. I hated that stuff so much and hope I never have to use it again. It was banana flavored and has ruined the taste of bananas forever. They scheduled another clinic visit in two weeks and also scheduled an ultrasound for my hepatic arteries to make sure they didn't get more narrow. Let's really pray that they stayed the same...I really don't want surgery to fix them.

Overall, I have been feeling the best I have since the transplant. My energy level is increasing everyday and my appetite is in full force. Yesterday I met Jenny for lunch, got my eyebrows waxed and then went shopping at Wholefoods and didn't even take a nap. I'm sure I am totally jinxing myself but I need to celebrate the good without worrying about the bad.

I couldn't have made it these 3 months without you all! Celebrate...it's your liverversary too!