Blood count 101 and an Official Diagnosis

I have became an honoree medical professional and would like to enlighten you with my smartness so you know what the hell I am talking about since most of my posts talk about my blood counts.

WBC- White blood cell. Your blood is made up from both red and white cells. White Blood Cells are cells of the immune system and protect you from infection. Mine have consistently been low which causes my ANC count to be low.

ANC- Absolute Neutrophil Count measures the neutrophils in a white blood cell. A Neutrophil is a subset of your white blood cell and is the most important part. It's the main part of the white blood cell that fight infection. When I get put into my bubble, its specifically because my ANC count is low.  When your ANC count is below 1500, it's called neutropenia.

Neutropenic Fever-  The cause of my last four hospital stays. When I have little or no nuetrophils in my body and I get a fever they freak out since the risk of an infection killing me is high. IV antibiotics are needed and I am on infection control lock down.

Neupogen- medicine I inject into my stomach to help my bone marrow produce white blood cells. The more white blood cells, the more neutrophil cells are present. 

In other news.....

I had my follow up last week with my Hematologist and after running $8,000 worth of tests I have an official diagnosis of what is causing my ANC to be so low.....are you ready..... Drug induced chronic neutropenia! It is what we thought the entire time, I really wish my insurance company would have paid me thousands of dollars for that official title. Basically, the anti-rejection drugs are killing my white blood cells- specifically my ANC cells. Yup, the drugs keeping my liver functioning at perfect levels are screwing my bone marrow up and there is not much they can do about that. They can't take me off of the anti-rejection drugs so the plan is to continue with the neupogen injections and pray that my body will eventually get used to the anti-rejection medicine. It's about a 50% chance of that happening and if it doesn't, I will live the rest of my life shooting myself up with $800 injections of E-Coli bacteria. We also hope that after one year, they can lower my anti-rejection drugs and that may help increase my WBC. Based on my track record, I am not holding out hope that my body will figure it out and have accepted living with track marks on my stomach and being in bubble life when needed.

Based on continued unstable white blood counts and my most recent hospital stay, my return to work date of September 1st has been postponed. This time, I didn't throw a fit and act like a 3 year old, I am accepting that I need to allow my body more time to heal. (I think I should buy myself a present for that accomplishment!) I have an appointment with Dr. Bzowej on Sept. 27th and we will re-evaluate a possible date then. She is confident I will return to work eventually but just not yet. 

So that is my update. Overall, I am feeling good and I was able to celebrate my new life with a FUN party... pictures coming soon! Thanks for reading and as always, love to my donor and donor family.

Well that was a FUN weekend! [Insert Sarcasm]

I can pretty much bet that your weekend was better than mine. My fun filled weekend started out on Thursday when I woke up with a bad sore throat and a temperature of 100.9. I called the on-call Dr and he wanted me to come down to SF for a clinic visit and labs so off to SF we went. My WBC and ANC counts were extremely low from the CMV treatment (Valcyte) and since I had a fever, they sent me home with antibiotics. I thought I would start feeling better with antibiotics in my system but damn, I was wrong. (I have been wrong a lot lately...have you noticed that?) I woke up Friday morning with my throat hurting even worse and a higher fever of 101.7. I called my transplant nurse and she talked to my main Hepatologist, DR. Bzowej who wanted to admit me so off to SF we went again.

After a shit load of tests, we still don't know what I caught but let's just hope I never catch that again. It was the worst pain of my life and hurt worse then the transplant. I couldn't swallow and my right tonsil was swollen it hurt to talk. They were giving me morphine for the pain and that barely even helped. (Bet you can't say you have ever gotten morphine for a sore throat!) They treated me with the "BIG GUN" antibiotics and on Saturday night, my fever finally broke. Since I broke my own personal record of lowest ANC (ANC is part of your WBC) of 33 VS the normal range of 1500-4000 they discharged me on Sunday since the risk of catching other germs was too high.

An Infectious Disease Specialist was called in to review my case and has been added to my list of Dr.'s who will be involved in my recovery. She did make some adjustments to my medicine and took me off the CMV treatment and my ANC counts already jumped from 33 to 2000. They also took me off CellCept- an anti-rejection drug but Dr. Bzowej pulled rank and overrode that decision since she wants to protect my liver. I trust Dr. Bzowej more than any other Dr. so trust that choice. I can handle a sore throat but not ready for another episode of liver failure since I am really enjoying my white eyes!

Thursday will be an eventful day. We head back to SF for 3 appointments- Hematologist, Infectious Disease Specialist and a visit at liver clinic. Hope fully we can find time to head to Blue Bottle Coffee, my newest addiction. I feel good, still recovering from the crazy weekend but my throat no longer hurts and no fever for four days!! The BEST news was my liver tests remained perfect. One Dr. said my liver is probably better than his!

Again, THANK you for the well wishes and support. You truly help keep me going!

Some pictures of my FUN weekend for your enjoyment!

My "BIG GUN" antibiotics

Always a great view

My view. Reminder to always have toes painted...makes the view so much more pleasant!

Family Pictures with Sammy the Model!

I wanted to share my family pictures that I had taken as a six month Liverversary Present to myself. Can you believe I was hours away from dying in January.... Look at me now!! Looking at these pictures really makes me happy. Although I have had some complications, you would never be able to tell in these pictures. Again, just proof of the gift my donor gave me.

Pictures taken by Shellie Kennedy