A year in review... with pictures!

Enjoy!!!

A year ago today...

Flashbacks suck! For the last month, Joe and I have had many flashbacks of me being so sick last year. "A year ago today" starts out many conversations with my family and friends. The truth is that a year ago today, I WAS DYING. My liver was failing, my body was shutting down. Daily blood draws were followed by my Doctor calling with hope that my liver numbers would decrease. Puking in just about every parking lot I went to. Not being able to drive since I wasn't able to master puking while driving. Unable to eat anything except a banana yet expanding with fluid retention. I was so yellow, my teeth were glowing white. I didn't really realize how sick I was until Christmas Eve day. Joe took me to Macys and I had to sit down just walking to the store, I thought I was going to pass out. Little did I know I would be in a coma just 10 days later.

Exactly one year ago, I somehow managed to make it to my niece Kiera's Birthday party. I sat on the couch the entire time and refused to let anyone take a picture of me since I looked like a yellow highlighter. A year later, she had another Birthday and I made sure to have my picture taken at her party. I can't wait until next year when we can say, "a year ago today, we were having so much fun!"

With my nieces and nephew. Look at me now....a year later, a new liver, a new life! 

The Best Clinic Visit Ever!!!

After 11 months I have finally had a perfect clinic visit. The past couple have been good, but yesterdays was GREAT!!! Why you may ask???  I was finally  released to go back to work for a January 15th return. This is a huge step since I was told that only some liver transplant patients ever go back to work. The odds were against me needing a transplant but at least I have a little luck on getting to return back to work.  My liver counts remained perfect and my white blood counts are still stable with once a week neupogen injections. We are going to try decreasing my injections to every other week so hopefully my counts will cooperate. This was the first visit that no other test was ordered and she didn't have any concerns. She said she was so happy at how well I was doing and to keep up the great job of taking care of myself.

I am hoping that the great visit helps me get into the Holiday spirit. All year I have been looking forward to celebrating the Holidays since I was sick last year but have found myself being a bah humbug. A combination of remembering how sick I was and knowing my donor family is experiencing their first Christmas without a loved one has brought me down. I think once I decorate my house this weekend and put up a tree, I will get more into the spirit. I did write my donor family a letter but out of respect for them, I will not be updating my blog on the outcome. Whatever choice they make is the right one.

Happy Thanksgiving!

Unlike most people, I am not going to list the things that I am thankful for. I don't need a Holiday to express how thankful I am. For months after my transplant I wondered why this happened to me and everyday the reason becomes more clear. This ordeal has made me more thankful, more strong, and overall, a better person. I hope that those close to me have also become better people because of it. Life is so precious and every day needs to be cherished as it can disappear at any time.

Today marks one year from when I woke up with right rib pain and realized something was wrong. Who would have ever thought the pain was actually my liver that was starting to fail. I didn't eat much and didn't feel good. Today, I feel GREAT and plan to eat the day away while enjoying the day with my family.

I hope everyone will count their blessings this Thanksgiving and always.

Thanksgiving Day comes, by statute, once a year; to the honest man it comes as frequently as the heart of gratitude will allow.  ~Edward Sandford Martin

Please send some extra love and prayers to my donor family today. 

I am sure I have people laughing at me

We all have done it. We have witnessed some crazy behavior and posted it on Facebook, Twitter or gossiped about it. Well folks, I wouldn't be surprised if I have been the person people are talking about. Some of my crazy new habits include:

• Carrying around a can of Lysol at the gym and soaking every piece of gym equipment before I use it. I even wait the recommended one minute before I wipe it down. Anyone want to become my gym partner? 
• Refusing to use anyone's pen. When needing to sign something I will dig around my purse to find my pen even if it takes a long time. Those who know me know how much crap I carry around. 
• Before looking at a restaurant menu, I wipe it down with a wet wipe. Not confident those ever get cleaned. 
• Those wet wipes sure come in handy cleaning anything on the table I may use...ketchup, utensils, salt/pepper shakers.
• When walking up to a door, if there are people around me I wait back so they can touch the door handle and keep the door open for me. I bet they think I am lazy but saves me from door handle germs. 

You may think I am crazy but I am just protecting my immunocompromised self during cold and flu season!

Questions that make you go hmmmmm

Yesterday I went to the dentist and I had to fill out a new health questionnaire. One of the questions was asking me to rank my overall health from not good to very good. I sat there pondering over that question since I really had no idea on what to mark.  I feel great, my blood test remain stable but are transplant patients considered to be in very good health? Do very healthy people take 22 pills a day? Get hospitalized numerous times a year? Have a 24 hour access to a Doctor? Considering I wouldn't qualify for individual health insurance or life insurance my first thought was no but then I remembered a Doctor telling me my liver function was better than his so I changed my reply to very good.


“Choosing to live your life by your own choice is the greatest freedom you will ever have.” 

I have two choices. I can think of myself as sick and unhealthy or as a healthy 31 year old who just needs some TLC care. I chose the latter, it's all about attitude people!

"If you don't like something change it; if you can't change it, change the way you think about it."  ~Mary Engelbreit

They were right again!

Ever since my transplant in January, my Doctors told me I will resume a normal life. I will admit that I never believed them. While I remained positive, I accepted my life had changed and would make the best out of it but I never thought I would feel normal again. Well, I was wrong and they were right again since I have been feeling more normal every day. Besides being a germa-phobe, lab visits and taking a shit load of medicine, I feel like my old self. I feel good and have been busy filling my days with things to do. I am planning trips with friends in the Spring and resuming living my life without the fear of hospital admissions and my liver failing.

As far as my health, things are continuing to head in the right direction. My ANC and WBC have remained stable with a decrease in the Neupogen shots. I am not trying to get too excited but I am hoping my body is finally accepting the anti-rejection drugs. I haven't been in a bubble for almost two months..can I get a woohooo! My CT scan came out negative for any hernias so I just have a bad pulled muscle in that area. I am going to see if my Physical Therapist can help fix that. My liver function tests continue to be great and everything is looking good for my January return to work date! 

I have been really thinking about my donor lately. I think of them at least once a day but recently, I can't stop thinking about them and their family. They recommend waiting a year to write the family but I think I am going to do it earlier and send them a letter for Thanksgiving. I hope I can gather the right words to express how truly grateful I am.

Clinic Visit

Yesterday I had a clinic visit with my favorite and main transplant physician, Dr. Bzowej. I haven't seen her since June so was excited for the visit. Even though she is in constant contact with my transplant nurse regarding my care it is always nice to have an appointment dedicated to my list of questions. The mains topics we discussed were:

• Returning to work! I know you are probably sick of this topic and thinking to yourself that I need to enjoy the time off but I am ready to resume my normal life. Everyone keeps telling me I will have a normal life and without me back at work, my life is not normal. I also was never the type of person to call in sick so being off of work so long has been hard. The good news is that she is confident I will be returning back to work but the bad news is that she wants me to wait until January 15th. My WBC is still not stable enough and she wants some more time to be able to tweak my medicine and neupogen shots with the ability of being in my bubble if needed. My WBC counts have been high these last two weeks so I am not needing daily injections so she is hoping my body is finally getting used to the medicine. She confirmed that my body is difficult but we already knew that! Although I was hoping I would get to go back sooner, I never have had the Holiday season off so will enjoy it while I can. I was so sick last Christmas so I am excited to celebrate this year!
•  My narrowing artery. I had an ultrasound to check on my two arteries that narrowed after my transplant and GREAT news... the aspirin therapy is working and the ultrasound showed a normal blood flow to my liver!! That means they will not have to do an additional surgery to insert a shunt. 
• Dentist and vaccines. I have finally been cleared to go to the Dentist and get both my flu shot and pneumonia vaccine. My teeth are so happy to get cleaned and I also need two crowns. I needed the crowns before I got sick so hopefully won't need additional work since I waited so long. 
• Prednisone. She is taking me off steroids!!  Prednisone is an anti-rejection drug and she is tapering me off over the next eight weeks. I hope this will decrease my cravings for dessert!  
• Hernia. I may have a hernia near my incision site so she ordered a CT scan to determine if surgery will be needed to fix. I will keep you updated on the results

 Overall, I feel great and getting more energy every day! I am happy for the great clinic visit and hope for a healthy next couple of months!

The Power of Two

On Saturday I went to San Francisco to attend the premiere of a documentary- The Power Of Two. “The Power Of Two” is a documentary film that tells the story of twins who received double lung transplants after suffering a life long battle with cystic fibrosis. It inspires action around organ donation and transplantation, and awareness of cystic fibrosis (CF) and other chronic illnesses. You can watch the trailer HERE.

I was able to relate to some but not all of the movie. Most organ transplants are a result of a chronic life long illness so once the transplant is done, a new wonderful world opens up that allows the person to do things they never were able to do before. My story is different since I never had a chronic illness and was sick for only one month prior to the transplant. Regardless of our stories being different, the movie was inspiring and I learned a lot about CF. Although my life is now filled with health issues, I am lucky that my first 30 years of life were healthy. The movie also highlighted the twins attending the Transplant Games, Olympics for transplant recipients and donors which has motivated me to start training for the 2012 games! What sport you may be asking......BOWLING!!

Overall, I am feeling good! My white blood count has remained stable from my daily neupogen injections and I only need to do labs weekly VS twice weekly. I had an ultrasound done to check my artery and to see if the narrowing had gotten worse but since they haven't admitted me, I assume all is well! My liver counts have continued to remain perfect and I view every day as a gift from my donor.

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

The dreaded call.... CMV positive.

I have some bad news I wanted to share with you.... a test from earlier this week came back positive for CMV. CMV is the virus that 70% of adults have, similar to chickenpox. My liver tests came back higher than normal the last two weeks so they tested me since this virus can attack my liver. Both my donor and myself were positive for the virus which put me at a higher risk for reactivating the virus in my body. They had me on preventive medicine (Valcyte) but took me off since they thought it was a cause for my decreased blood cells and you are most likely only to get it within the first couple of months after transplant. The treatment is heavy doses of Valcycte that will drop my white blood cells even lower for three weeks so I will be in my bubble for around three weeks starting Monday. I will be taking daily shots of neupogen to help my WBC recover but based on my history with Valcyte, they will still be to low to leave the house. They are hopeful one round of medicine will kill the virus but if not, they may need to admit me into the hospital for IV therapy.

Although the news is not what I was hoping, I am glad we have a plan to get rid of it. My Doctor also said there may be a slight chance that it was contributing to my low blood cell counts so we may see improvement in those once I am done with my treatment. They always warmed me that this virus was a possibility so it wasn't too much as a surprise but I wasn't expecting it since I didn't have any symptoms.

The good news is that I was still able to go on a Spa Girls Weekend in Truckee! Jenny, Nicole and myself spent 2 nights at Northstar and spent the weekend pampering ourselves with spa treatments at the Ritz Carlton and eating great food. I don't have any pictures to share since we spent the weekend in our pajamas with no makeup on:)

Thank you ladies for the fun weekend and for being such great friends!

Patience is a virtue.... one that I don't have!!!

Today was the big day... my appointment with my Hematologist. He was suppose to have the answer as to why my blood counts are not stable. He failed my test and didn't have a magic answer. He did order a crap load of blood tests and scheduled a follow up appointment for August 18th. Basically, he thinks my blood cells will recover as my body gets used to all the anti-rejection drugs and I just need to keep giving myself shots of Neupogen to help boost the bone marrow. He will discuss the need for a bone marrow biopsy during our next visit but he doesn't think that will necessarily tell him anything. Not sure what I was expecting but I was hoping for a quick fix. I am sick of waiting for my body to recover, we gave it a new liver so come on... what else do you want?? I want to get on with my life and stop these damn injections that make my bones hurt and my muscles spasm. My Doctor isn't keen on me returning to work while still on Neupogen injections and returning to work is my last hurdle to validate I will live a normal life. It's like a double edge sword.... I know I need to have patience and let my body recover but it's hard when overall I feel good and want to rejoin the traffic on Sunrise! 

I did get some good news during my visit, my ANC count went from 500 yesterday to 1200 today so bubble life was less than 24 hours! Now I can use my Old Navy Groupon that expires on Saturday..... Priorities people!! 

PS... Please send prayers to the patients that were in the waiting room of my Hematologist who is also an Oncologist. I was saddened to see some very sick people and hope they kick some Cancer ass. Makes my situation seem easy.

Six Months for real this time

Happy Six months to my new liver. This is the second time celebrating this milestone since I counted wrong last month but regardless of celebrating it twice, today is a BIG day. I hope my donor and their family can feel the love I am sending them today and everyday. My donor and transplant team gave me a second chance at life. Not many people will have that opportunity and although it hasn't been all puppies and rainbows I am grateful for the gift of life that I was given. The love and support of my friends and family has been overwhelming and I could not have survived this crazy ordeal without them. Lets have one big group hug!


On this six month anniversary I am happy to report that my liver is doing great! My white blood count and the other hand is not. My absolute neutrophill counts continues to be low and the adjustment to meds have not helped so I have been referred to a Hematologist( a blood specialist). He will run some more tests and try to figure out why my blood is acting like such a Diva!  Again, life has proved me wrong......I was so bummed to not be able to go back to work but it was a blessing in disguise.  I have been in my bubble all week and how horrible it would have been to call in sick on my first day back at work!! Just proves that my Doctors continue to be smarter than me! 

"The more you praise and celebrate your life, the more there is in life to celebrate." -- Oprah Winfrey

Expect the Unexpected

On Tuesday, I had a clinic appointment with my main and favorite Hepatolgist, Dr. Bzowej.  I brought my list of items to discuss and the first and most important one was that I needed a release note for me to go back to work. The goal since I was released from the hospital on January 18th was to return to work on July 5th. Since my liver counts have been perfect and my white blood count has been improving I had no doubt in my mind that I wouldn't be getting the note. Well, I was stupid silly and forgot that simple rule that I learned watching Big Brother.... expect the unexpected.

SHE SAID "NO!!" She didn't even pause or think about it when I asked. She explained that my white and red blood cells are not stable enough to go back to work. I do not have enough white blood cells to fight an infection and my red blood cells are low and not filled with enough oxygen. Basically, my bone marrow is messed up. Messed up from what you may ask?  The medicines keeping my liver counts perfect and the one that fights the dreaded CMV virus screwed up my bone marrow. She took me off the medicine used to fight CMV called Valycte and she thinks that will help. I am sure my insurance is celebrating that change since each bottle of 60 pills cost over $4600.

So the new goal is September 1st and she did give me hope that it is possible to return sooner. It all depends on my bone marrow. After consulting Dr. Google, I found that massages help bone marrow recover so my masseuse will love the extra business I will be giving her. Sadly, retail therapy was not listed.

The last couple of days I have been upset. I can accept the transplant, multiple hospital admissions, daily drugs and no alcohol but I was seriously having a hard time accepting not being able to go back to work. Luckily, the Rolo McFlurries are making me feel better. You should really have one if you haven't already!

PS.... HAPPY BIRTHDAY to my Brother!!!

Happy Anniversary to Joe Deegan

Happy Anniversary to the most amazing husband.  I am lucky to have you in my life and no words can express the bond that we have. You truly are my rock and I couldn't have survived what I went through without your love and support. These six years have flown by and I can't wait for the rest of our lives together.

 "Our wedding was years ago.  The celebration continues to this day."- Source Unknown  

Still got the luck!!

Today is a big day for me both physically and emotionally as today marks five months since I had the transplant. It has been five months since I almost died and  five months since my donor and medical team saved my life.

Prior to my transplant, I felt I was a very lucky person. I had the husband of my dreams, the cutest dog ever, a house, a great job, fabulous friends and a family that loved me.  Last week I got the call that my Neutrophil counts were critically low and I needed to be in isolation. Truthfully, I was a mess after that call. I felt my luck had ran out and I would never be normal again. Today has brought a new sense of luck. Look at my list of how I defined I was lucky. I STILL HAVE EVERYTHING I LISTED!

Definition of LUCK:

a : a force that brings good fortune or adversity b : the events or circumstances that operate for or against an individual

In looking up the definition above, luck is not what you have in life, it is how you deal with what you are given. I could think of myself of being unlucky that I needed a transplant or I can look at it that I was damn lucky to get the transplant. I was damn lucky to get the transplant and have great insurance. Some people die waiting for a liver and others pay thousands of dollars in medical bills. My transplant has brought adversity into my life but it has also done much more. Mainly it has confirmed I still got the luck!

“Luck is believing you're lucky.”- Tennessee Williams

One last thing, I have a favor to ask.....
Please send good thoughts and prayers to my donor's family today. While I am celebrating an extra five months being alive, they are remembering that it has been five months since they lost their loved one. Thank you donor and family for giving me the gift and luck of life.

Passed the test of May 26th!!!

For the last two months, I have been admitted back to the hospital on the 26th of the month. I can happily say that I was not admitted today! While I didn't get admitted, I did get an evening phone call from my amazing Hepatologist, Dr. Bzowej with some crazy news. I tested positive for Salmonella and needed to start antibiotics. We have no idea how I got it but probably from eating out.... I have the worst luck with food born illness. She said I seemed to be fighting it but wanted me to start antibiotics as a precaution. My first thought was I will never eat out again but I decided I cannot live in fear and will continue to enjoy my dinners out. Who knows..... it could have been food we cooked ourselves? Dr. Google says most people who get it never know it and do not need treatment. I just know since they test me for everything. They will be reporting it to the health department and I think I may be the health departments most frequent patient since the Hep A was also reported.

In other news, my liver counts continue to look great and I am on track to go back to work on July 5th! I am excited to go back to work and live a normal life. The time off was needed to recover but the reality TV shows are getting old and my Facebook addiction is getting worse so it will be perfect timing.

I hope everyone has a great Memorial Day weekend!

I am a rule follower

Luckily I have always been a rule follower since my new liver came with a list of rules. I recently read a blog entry of a fellow liver recipient who doesn’t follow the rules and doesn’t understand how any transplant recipient can.  Her reasoning is that she needs to live her life to the fullest in honor of her donor. I feel the exact opposite. I will follow the rules so I can LIVE as long as possible with the gift my donor gave me. I couldn’t live with myself knowing I caused my liver to fail by “breaking” a rule. I don't think the rules are that bad and don't think any prevent me from living my life. Each transplant hospital has their own set of rules. Below is some of mine:

• No alcohol.  Not going to lie...Sadly the hardest rule for me. Not really hard but damn I miss my evening cocktail or glass of wine. Totally worth it to be alive though.
•  No gardening without gloves. Luckily I have never been known to have a green thumb and who would want to touch cow shit with their bare hands anyways?
• No puppies since they don’t have full sets of shots. Only for first months after transplant. This is Sammy's favorite rule. He doesn't want a brother or sister.
• No spas and steam room- not sure when this rule expires but not forever. Lot's of germs in those.
• No fresh fruits or vegetables when WBC is low.
• No leaving the house when WBC is low.
• Blood pressure and temperature twice a day.
• No over the counter pills or vitamins without Doctor approval.
•  No lifting over 15 pounds until 6 months post transplant.
• Stay out of the sun. I’m getting old anyways…prevents wrinkles
• No grapefruit. Weird, I know but it counteracts with my medicine. I missed grapefruit at first until Joe reminded me that in our six years of marriage, he has never seen me eat one.
• Never ever missing a dose of my medicine.  Luckily I will never forget with loved ones hounding me.
•  Live my life and leave the worrying to my medical team. Kinda cool I have a team…and damn they are smart. I have access to them 24 hours a day, 7 days a week. My primary transplant Dr even gave me her cell phone number. Yes, that makes me feel special.

Overall, not a bad trade for living. I don’t see any rule worth breaking? I know people freak out when I go places but as my Doctors tell me I need to live my life. As soon as my WBC is above 750…I get the hell out of the house.  Just so long as I follow the rules, they are happy. I also talk to my transplant nurse at least twice a week who is in constant contact with my Doctor.  They know about everything I do and are so happy I am living my life. Trust me…I won’t overdo it. I need to take great care of my liver…for my donor. 

PS.... My Dr took me off of the medicine that was causing my WBC to be low. Its been in the normal range for two weeks now. Now lets really hope I don't get CMV. 

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!

Another stay at CPMC

Remind me never to brag about my numbers again...I totally jinxed myself! Although my liver numbers were good , I ended up in the hospital this week. I was battling a fever all last week which the nurse thought was a side effect of my neupogen shot but on Saturday it reached 101.9 which meant a hospital admission for me. We drove down to SF Saturday morning after an amazing fast packing job... Joe and I are really getting good at packing for hospitals. I checked into the ER and they got me in a room within 2 minutes. Liver transplant plus fever = VIP treatment.

They took blood and tested me for strep and the flu. The flu test was not enjoyable, they stuck a swab up my nose that I swear touched my brain. My blood test revealed that I had a super low white blood count. Bad thing about a low WBC was I could die from an infection but the great thing is it scored me my own room. They started me on 4 different IV antibiotics and kept me for 3 nights until my count started to increase. Most likely the low WBC is a side effect of my anti rejection medicine so they are adjusting them again. I am home now but restricted to my bubble (my house) since the risk of infection is still high. I can't eat fresh fruits or vegetables so been surviving on flaming hot cheetos, sour patch kids and lemonade.

Overall, the hospital stay wasn't that bad. Yes, it sucked but I have learned it's better for
the safety of my liver and my health to be there rather than at home worrying. I got to see all my nurses and even met my new favorite nurse, Frank!

A HUGE shout out to Jenny for watching Sammy the dog. You have no idea how much I appreciate all you have done for me and Sammy. Also, thank you Joe and my parents for staying with me and keeping me entertained and for the visits by Tony and Jenn!


Thanks for the texts and FB messages, it helps get me through the day!

The Good, the Bad and the Ugly

The Good:

• I am still alive!!
• My liver counts are perfect!! I had a clinic visit today and my transplant Doctor said that my counts are the same as a healthy person without a transplant. I was so excited that I started clapping. I'm sure they will be elevated next week since I am bragging but I am savoring the good news. I celebrated with a Root Beer... it was delicious.
• I only have to do labs once a week. My arm is so excited.
• I am driving! I can't drive the 4runner yet but I am cruising around town in my Camry. I can see why they had me wait 2 months... you really use your abs to drive. 
• I have lost a lot of weight and my drivers license is no longer lying. I actually got in trouble today at clinic for losing so much weight so they removed the low sodium and low fat diet restrictions. I have never had a Dr tell me to gain weight so I plan to pig out on junk food. 
• I fully love my 2 hours a day watching 90210 on the Soap Chanel. Donna sure dresses crazy and Valerie is so evil. Love all the drama.
• My dog Sammy cuddles with me daily. I have realized how lazy he is and he brings joy to me everyday.
• Nicole and Tony welcomed their son, Dylan into the world. This validated that although my life has changed, I am so happy to be alive to experience that special moment. It was pure bliss holding him in my arms.

The Bad:

• My white blood count is low so I had to start injections of neupogen. I gave myself my first shot today and it sucked. I thought it would be easy but it actually freaked me out. Guess I will never become a nurse. The low white blood count is caused by my anti-rejection drugs. If it continues to decrease, I have to be on lock down in my house since my risk of infection is very high. Oh, and the medicine is made from Ecoli.... WTF??? They don't want me to get sick yet they inject Ecoli in me?? 
• I still get tired very easily. I miss my high energy old self. Naps and I get along very well. 

The Ugly:

• Last week my Potassium levels were high so I had to drink the nastiest medicine EVER. My transplant nurse warned me to stay near a toilet but OMG I had no idea how bad it would be. I will spare you the details but I lost 5 pounds in one day. I have never felt worse post transplant. I was hours away from having to get an IV since I got so dehydrated.

Happy to say the good outweighs the bad this week. I couldn't do it without everyone's love and support. The monthly pedicures and massages are also helping : )

Happy 2 month Liverversary!

They say wisdom comes with age and since its been two months, my liver is getting smarter each day. I can't believe it's been two months since my liver transplant. Some days it feels like yesterday and other days it feels like it was years ago. Within the last week, I have come to the realization that I have accomplished so much within the last two months and I need to celebrate those accomplishments rather than focus on things that I can't do. I need to remember that my body was very close to shutting down and although my numbers haven't been perfect they are getting better and it's only been two months. The perfectionist in me has been humbled!

Oh boy....Emotions Emotions Emotions!

My emotions have been all over the place this last week. I have been happy, sad, fearful, anxious, optimistic and depressed all in one day. I think the "HIGH" of being alive has worn off and I am really feeling my emotions. The Doctors warned me that this may happen as they wean me off my steroids and boy, they were right. Luckily, the Charlie Sheen drama is helping me since I am not as crazy as he is so that makes me feel better. I also found that I need to get out of the house everyday since sitting at home makes me feel like a transplant patient. I get to start driving on Tuesday so that should help.

I had a clinic visit on Monday in San Fransisco. I was excited to go to support group and see my transplant nurse. My counts are back up a little so lets hope this week is a good liver count week so I can reduce my weekly blood draws to once a week. The labs in Roseville are not as good as SF and my poor arms would like a break!!

Hope everyone has a great week. I get to go to Bunco on Thursday...highlight of the week! I sure have missed Bunco and can't wait to see everyone.

My transplant heroes and friends.

My surgeon! Dr. Hassoun. He is the best!

DianeWeissmuller- 19 year post liver transplant friend. Her father-in-law was Johnny Weissmuller- Tarzan! I am holding the book she wrote and signed for me.

Karen and Gayle. 2 and 6 year post liver transplant friends

Janet- my transplant buddy. She had a liver and kidney transplant 2 days before me.

Nurse Mary!!! Another Angel and one of the reasons I am alive today.

NP Tanya. Another Angel... I have a lot of Angels! She made the call to Joe and my parents that they had the perfect liver! She is my fist pump friend!

FAQ's

This is not only a new journey for myself but also a new journey for my family and friends so I wanted to answer some frequently asked questions. There is no question off limits so please email me or leave me a comment if you have any questions that are not covered.



Did you see any Angels or the Gates of Heaven? 
No, I wish I would have seen Joe's Mom but I don't have any memory of any white lights or Angels. My only vivid memory is when I hallucinated that my surgeon didn't have any eyes.
 
Do you know anything about your donor?
Donor information is kept confidential. I am able to write the family a letter and they have the option to receive it or deny it. The letter cannot contain any personal information and after one year, they can choose to reveal their identity.

Are you in pain? 
I have some pain around the incision but its not that bad. They cut all my nerves and stomach muscles so I am still numb in the stomach area. I have more pain in my back from compensating having no stomach muscles.

How much medicine do you have to take daily and what are the side effects? 
I take a lot of medication but it should taper off in the next six months. I take 2 pills at 8:30am, 8 pills at 9:30am, 6 pills at 7:00pm and 2 pills at 9:00pm. I also take 1200mg of magnesium 4 times a day and swish and swallow some nasty liquid after every meal and before bed. My main side effect is that my hands shake. There goes my dream of being a surgeon! I also have a short temper since I am still on a high dose of steroids. 

Can you live a normal life or do you have restrictions?
I have what I call a "new normal life".  I have a strict diet I have to follow- Low carbs, low sodium and low fat. I have a whole list of food that I can't eat but it's too long to type out. My new life also consists of labs to check my blood levels twice a week and lots of Doctor's appointments. After the first year, I can resume all activities I once did and even travel outside the United States.

How do you remain so positive?
What other choice do I have? After almost dying, I am lucky to be alive. I would hate to waste this second chance on being negative. I do have my moments of pity and I get anxiety every time I go to the Doctors but I want to cherish every second of this new life. You don't realize how lucky you are until its almost been taken away. Yes, it sucks that this happened to me but I need to remember that God doesn't give you more than you can handle. If I can get through this... I can get through anything. My favorite quote sums it up...
"Happiness is a choice, not a destination."

I am home!!!

I AM HOME!!!! After my recent hospital stay, the Doctors not only discharged me from the hospital but also told me I can go back home to Roseville. After two months in San Francisco and a total of 25 days in a hospital bed I was ready!!! My fear of going home disappeared since I would still be monitored with twice a week labs and I still had access to my 24 hour transplant team.

We left SF in the pouring rain and I became the worst back seat driver...sorry Joe! The combination of the rain, not being on a freeway for two months and my steroids made me a very nervous person. My nerves went away as soon as we pulled into the driveway. I was home! I actually cried when walking through my house. This was the first step in getting back to my "new" normal life and I no longer felt like the transplant patient stuck in SF.

Overall, I am feeling good. I still get tired easily and my back hurts after standing/walking for long periods but I still feel so much better than before my transplant. I can't lift more than 20 pounds and still can't drive but enjoy getting out of the house. Jenny took me shopping yesterday and I had a blast. I also love visitors so feel free to come visit me!

I think Sammy is even more excited to be home. He was a good city dog but he missed our couch and hated not having a backyard.


My road to recovery continues but like Dorothy said, "THERE IS NO PLACE LIKE HOME!"

A reality check...

On Monday, February 14th I got a reality check of my new life. I felt great, got my labs done, went to breakfast, attended support group, delivered brownies to my nurses and was ready to go to my last clinic visit. I was expecting to be freed from the restriction of staying in San Francisco but instead I had a reality check. My labs from that morning showed my liver enzyme levels doubled in the wrong direction. The Dr ordered an ultrasound for that afternoon and a liver biopsy for Wednesday and he thought I may be having another episode of rejection.

During the ultrasound, the tech said he saw my hepatic artery pumping blood rather than having a steady flow. I made the mistake of Googling to find more information about the hepatic artery which put me into a panic when I read that it could result in the need for a second liver transplant. I was a ball of stress all night and all of Tuesday morning. On Tuesday I was on the phone getting a pep talk from my friend Joann ( also my boss) when my transplant nurse called and told me I needed to be admitted back into the hospital. After a shower and packing the essentials, I checked into the hospital at 1:30. I must be a VIP since I somehow lucked out and scored a private room with a great view.

Dr. Davern ( the god of hepatology) came and saw me and explained that he was concerned my artery was narrowing so he ordered a CT scan for that night and a biopsy for Wednesday morning. The CT scan required dye to be shot through my arteries to watch the blood flow. The CT scan made me feel crazy hot and gave the sensation that I peed my pants. The biopsy was done in my stomach with a needle and was much less painful than the previous biopsies done through my neck. The waiting game began as we waited for the results.

At about 5pm on Wednesday I got some good news. The results showed no rejection and after reviewing the CT scan with the surgeons they felt my artery needed to be watched but could be treated with aspirin. It will require follow up ultrasounds and they may need to fix it if it gets worse but overall the liver was doing good. They explained the biopsy showed some residual trauma from being removed from the transplant and that was the cause of the elevated counts.

I was released today and was told I can go back home to Roseville on Saturday!!!!! This extra hospital stay gave me a reality check on a few things:

• Being readmitted doesn't mean I am going to die or need a new liver. It just means they can get tests and results faster.
• Even though I feel great, I need to be ready for continued bumps in the road.
• Never Google before talking to the Dr's.
• Don't lose faith. Remain positive and let the Dr's worry and just do what they tell me.

What can you do for me????

Like I have said before, everyone has offered so much support during this whole ordeal. My friends, sorority sisters, family, and co-workers have really helped me keep my chin up with presents, flowers, Facebook messages, and cards. Everyone has asked how they can help and I only have one request. Please consider becoming an organ donor and register your wishes at Donate Life or click the donate flag on your right. The thousands of people waiting for an organ transplant and me and my family thanks you.

Top 10 Laughable Moments

Below is a list of the top 10 things that made me laugh during this whole ordeal. Some I was awake for and others I was told about. They may not seem funny to all but now that the worst is over we can look back and laugh.


# 10. Med student diagnosis:
The Med Student started off by saying how nervous he was. So what did I do to make him more comfortable...started puking.  My parents and Joe didn't make things any easier on him by staring at him while he was trying to interview me.

# 9. Joe's rally beard:
Joe didn't shave once during my hospital stay and grew what he called my rally beard. I love him for the thought but at the end of three weeks, it looked horrible. It was patchy and hid his cute baby face.

# 8. What Month is it?"
Part of the daily routine was for the Dr's to come in and test my mental status.  They asked me basic questions like "what day is it", or "what city are you in." Well, I guess I got a little annoyed and when they asked me what month it was I responded, "Ugh! April!" Guess April is my favorite month??? (it was January)

# 7. Where are they?:
We slept in after a rough night and when my parents and Jenny weren't there when I woke up I freaked out thinking they died from carbon monoxide poisoning. They were not answering their cell phones... I was freaking out! Turns out they were getting coffee in the cafeteria and just didn't have cell phone service. They said they were at my room but I was sleeping. My dad bought a carbon monoxide alarm that day for the apartment!

# 6. The fall:
While holding an iPad and navigating the obstacles of the hospital room Jenny's Ugg boot suctioned to the floor and she went down. Miraculously she saved the iPad with what looked like an Olympic gymnastic move.  To top it off the nurses thought I went down and came rushing in to find it was Jenny that went down.

# 5. Sharing Livers:
Wasn't funny at the time but now that we look back we are laughing about my parents asking the Dr's if they can each donate half of their livers to make a whole liver for me. My mom doesn't think it's funny but I can just imagine the look on the Dr's face.

# 4. You want me to help?:
Joe gets freaked out at the sight or even thought of getting blood drawn. While taking 21 vial of blood, they handed Joe a full vial and asked him to wrap a sticker around it since it had to be hidden from light. The look on Joe's face was priceless. Let's just say that he is no longer freaked about blood.

# 3. Does that come with a tummy tuck?:
A surgeon came to visit and my first question for him was "Are you good." Once he replied "The Best", I asked him if he could throw in a tummy tuck while he's at it. He laughed and said "Uhhh...No!"

# 2. The surgeon with no eyes:
So, one of the side effects of drugs I was on is hallucinations.  I obviously experienced this side effect because when I woke up from surgery, I asked Joe how the surgeon operated on me with no eyes. Apparently I hallucinated that my surgeon had his eyes taped shut with slits cut so he could see.

# 1. She's a "Runner":
I was labeled as a "runner". After a CT scan I was waiting for transport to take me back to my room and was not feeling good and pissed. I was going to throw up and told Joe just to wheel me back to my room. We were halfway down the hall when the tech came running after us and told us we broke hospital policy. After that I lost my wheelchair privileges and was transported in my hospital bed.

A Ride on the Roller Coaster

All the Doctors and nurses warned me that my recovery would be like a roller coaster ride and I would have good and bad days. Well, this week was a bad week. On Tuesday I had an endoscopy procedure to remove a stint they put in my bile duct to keep it open so bile would flow freely. The procedure went great but on Wednesday I had a very bad day. I started to spike a fever and was very nauseous. I also was very emotional and had my first pity party for myself, I asked God....WHY ME?????

Luckily my pity party ended on Thursday and I think the nausea was caused by the antibiotics (cipro) they started me on for my endoscopy. During my clinic visit yesterday they gave me anti-nausea meds (compazine) and boy....that is a magical wonder drug. I am feeling back to almost normal. My fever and nausea did make my Doctor order a crap load of tests but they have all came back normal and we are just waiting for one more that should be back on Monday.

This minor set back is keeping me in SF for another week but I am okay with that. My transplant team and CPMC is my new comfort zone so I am actually nervous to leave SF. I think that it is also hitting me that I have my angels organ in my body so I see some therapy in my future.

Thanks for all the comments, well wishes, and prayers. It truly lifts me up.

California Pacific Medical Center in SF- the hospital that saved my life.

Before being admitted, I never heard of CPMC but after this experience that hospital will forever hold a special place in my heart. The Hepatology team was amazing and every Doctor truly looked out for me. They would hug me and my family every time they saw us and would explain everything so we would understand. At one point, I made them cry and it just shows what huge hearts they have. At one of my clinic appointments, one Doctor told me that every Doctor in the hospital was praying for me to get the perfect liver.

The nurses were also amazing....even the one who wouldn't give me ice chips when I first woke up. While the Surgeons and Doctors helped save my life, I recovered so fast because of the care the nurses gave me. My body had a hard time adjusting to all the medication I was on and they never made me feel embarrassed or that I was a burden. I have a whole new respect for nurses and think they should all get a raise. The hospital has recognition cards and I must have filled out 25 of them for nurses!! I'm sure they think I went overboard but they deserve the recognition.

Check out the article below, my Doctors were named best Doctors in the nation listed under Hepatology! I will be seeing Dr. Bzowej for the rest of my life and great news....she has an office in Sacramento!!

• CPMC Best Doctors

How am I doing?

It's amazing how good I feel! I guess I really needed a new liver since I haven't felt this good in months. I am eating and building my strength everyday. I still get tired easily and I get shooting pain from my nerves growing back but overall I feel good.

Every Monday and Thursday are called my "work days" since I have to get my blood drawn between 7-8am then I attend my support group meeting followed by a clinic appointment where they review my labs from the morning and make any adjustments to my medicine. Clinic visits always freak me out as my lab results have been all over the place and I never know if it's going to be good or bad news. My last clinic appt. on Monday, January 31 had some great news. The counts that they were worried about started to drop and they said I may get to leave San Francisco as early as next week.  I am keeping an open mind since it all depends on my labs results next week.  On Tuesday they are going to take out a stint that is stretching my bile duct since they also removed my gallbladder. That will be an out patient procedure.

My journey will still continue back in Roseville with weekly labs and monthly clinic visits. They also gave me a back to work date of July 5th which seems so long away but they said it will take that long to regain my strength and they want me to be cautious to prevent rejection. Thanks again for all the well wishes, comments and support. It truly keeps me going!!!

A look into my new life

The transplant not only saved my life but also changed my life. Here is the top ten things that have changed:         
1. I can never be drunk again. RIP wine
2. My new eating lifestyle includes low sodium, low- fat and low carb foods. Basically I can't eat anything that comes from a box, boxes are full of sodium. I also can't eat pickles which I am craving!
3. I take all my medicine. I used to hate medicating myself with prescription drugs but now embrace the 20 plus pills I take everyday since without those pills, I can die. 
4. I have a new respect for nurses. They truly are angels and they took great care of me.
5. I have a new outlook on life. I am so happy to be alive that I will take some more time to stop and smell the roses instead of going going going and saying yes to everything.
6. I am learning how to let people take care of me rather than being so damn independent. I am accepting the fact that I need the help. 
7. I learned that my family, friends and co-workers are amazing. The support everyone has given me is amazing. The cards, the gifts, the prayers truly keep me going.
8. I truly believe praying works and there is a GOD looking after us.
9. I love feeling hungry. After not wanting to eat for a month, it is the best feeling in the world.
10. My donor is my Angel. I am so sad that a family lost a loved one but so grateful they chose to be an organ donor. I hope to one day meet the family so I can personally say, THANK YOU.

A visual timeline of my Hospital Stay. Don't worry, none were taken when I was in a coma or had a ventilator

21 vials of blood the night I was admitted to CPMC

Happy New Year!!!

My view from a room

The hospital is a teaching hospital and this med student had to try to diagnose me. I threw up halfway through his interview. Saw him after surgery and he said I was very helpful:)

My view

Another room view, I think?

They blew a vein in my hand

Room 330 in T-ICU. Don't really remember having this picture taken

Jenny my BFF- She was there a lot. Thank you for all your support Jenny!!

My parents. Couldn't ask for better parents! Thank you for everything!

My husband Joe- MY ROCK. He refused to shave until I was discharged. He called it my rally beard. I love you and couldn't ask for a better more supportive husband. He slept in a chair a lot during my stay.

The day I woke up after surgery. Vent was out! I am holding a suction tube that I had to cough up shit from my lungs into.

Harp player came into my  room to help relax me!

My medicine for the month. I will be on anti-rejection drugs for the rest of my life.

My medical alert necklace. My parents spoiled me and upgraded to 14K gold since I have to wear it for the rest of my life.

My neck wounds from my central line and my liver biopsy. A needle went into my neck and down to my liver for the biopsy while I was wide awake... gives me the willies!

The pumped me full of liquids and my face was so swollen!

Day I got my staples out. Sorry it's sideways...

Why the hell I needed a liver transplant....part 2

The last day I really remember is New Years Day so the rest of the story is what I was told by Joe, my parents and Jenny.

December 30th-January 3rd: I was in room 330 in the Transitional Intensive Care Unit(T-ICU). I had the best, most fun nurses on that floor..huge shout out to Victoria, JD, Roy and Russell. They made me laugh in between puking and were just great. They still were hopeful my liver would recover since my mind was clear and I was still as sharp as a tack. Once your mind goes, they call it encephalopathy since the toxins cannot be cleared from your system and you start being confused and lethargic. They told Joe what to look for and he needed to notify my Dr if he saw any signs.

January 4th: I became very lethargic showing signs of encephalopathy and Joe notified the Dr's and they transferred me to the Intensive Care Unit(ICU) immediately. They also did a liver biopsy but put me on the transplant list before they even got the results back since I started to go downhill fast. You are listed on the transplant list in order of your MELD score and my MELD score was the highest of 40 so I was listed number one on the West Coast. My liver biopsy came back that half of my liver was dead.

January 5th: I started to throw up uncontrollably and they became really worried that I would exhaust myself and not be able to be operated on so they put me in a medically induced coma using the same drug they euthanize people with called Pentobarbital. They also put me on a ventilator and gave me the same Drug that killed Michael Jackson, Propfol. A liver was found but it wasn't good enough so they turned it down.

January 6th: My brain started to swell so they drilled a hole in my skull and put a bolt in my skull to relieve the pressure. They called it my unicorn since that is what it resembled. They were able to watch my brain waves and I was monitored by a neurosurgeon. They were unable to do surgery until I had zero pressure since pressure would cause brain damage. They also cooled my body to 90 degrees to help prevent additional swelling in my brain A second liver was found, a surgeon rushed to Stanford to look at it but it was determined to be a bad liver so they didn't take it. Nurses Mary, Emily and NP Tanya were my angels and worked all day and night to get me stable enough to survive surgery.

January 7th: The scariest day for my family and friends. I needed a liver bad yet all the ones presented were not good enough and I continued to be in bad shape. My brother was called and told he needed to be there since they were not sure how much longer I would live without a new liver. Basically, they thought I may die.

January 8th: At midnight, NP Tanya called Joe and my parents that they think they may have the perfect liver in LA. A surgeon was flying down to LA to look at it. At 7am, the best news came...the liver was a perfect match and I would be going into surgery at 9am. The surgery took 6 hours and the surgeon came out and told the waiting room of family and friends that the liver is working great and they could see me in 30 minutes! He also told my family that my old liver was totally dead and wasn't functioning at all. My donor, my angel truly saved my life. I think about my donor everyday and hope to one day meet their family to say thank you. 

January 9th- 12th: I started waking up on the 9th and they took out my ventilator but discovered I went into pulmonary adema- fluid around the lungs and I wasn't able to catch my breath. They put the ventilator back in and sedated me until January 12. I woke up with the ventilator still in and I freaked out. The Dr's wanted to leave it in just to make sure I could breathe on my own. After about an hour of crying, I did hand motions to ask for a paper and pen and wrote my Dr a note begging them to take out the vent. They did and it was the best feeling ever!! I was starving when I woke up but they didn't even want me to have ice chips but later talked a Dr into letting me have some food. They gave me tea and an icee and it was the best thing I thought I ever ate in my life! My skin was already back to normal and no longer glowing yellow. I was still loaded with drugs so was quite confused and thought my surgery was the day before so Joe had to break it to me that it was actually 5 days prior.

January 13th- 14th: After keeping down food, they removed my feeding tube and my catheter. Physical Therapy came and got me out of bed and I ate breakfast in a chair. They got me to walk and on the 14th I was moved to the 6th floor.

January 15th-16th: I started to get fevers so they did a liver biopsy and determined I was rejecting my liver. I was scared but they said rejection meant my immune system was stronger than they thought and I recognized my liver was new so I was trying to reject it. They upped my steroids and that turned around the rejection. They also did a procedure called ERCP where they changed the position of a stint in my bile duct. I guess my bile duct is small so they used the stint to stretch it open. They will be taking out the stint in the next week or two.

January 17th-18th: I got the ok to be discharged on the 17th but since it was the MLK Holiday, the liver transplant coordinator was off and she needed to review my medicine with me before I was able to be discharged. After 20 days in the hospital, I was discharged on Tuesday the 18th.

Part of getting a transplant is that you need to stay within the city for follow up appointments so my new home was an apartment in SF.