Happily Ever After

My Story

Five years ago at the age of 21 I went to the Emergency Room for some side pain and internal bleeding. They did their typical lab work and my liver function results were out of range. The next thing I know I am being hospitalized and a nurse comes in and mentions something about my “cirrhosis”. I thought she had the wrong room. Then she realized nobody had told me. Kind of a big oops on her part. She sent the doctor in and he informed me that I had cirrhosis of the liver and would need a liver transplant. At 21!? I don’t drink or do drugs. However, even though this was devastating news, I was ok with it. I knew that God was going to get me through it, no matter what happened.

They tested me for everything under the sun to try to figure out why my liver failed. To this day, they still don’t know. I don’t have hepatitis A, B, C or any other liver disease. They sent my biopsies to 3 major hospitals and still can’t tell me why my liver failed.

I decided to treat my cirrhosis naturally. I had strong convictions and my doctors felt that it was ok, because they didn’t have a treatment either. I spent the next 5 years doing every natural protocol you could think of. At one point, I was almost off of the transplant list as I was getting better on one natural treatment but it was so expensive I had to stop and that is when I got a lot worse. It was in November of 2010 that I really went downhill. I spent a year almost bed-ridden.

From the beginning, they gave us the option of doing a living donor liver transplant and my sister had always said from day one that she would give me part of her liver. Well, after getting sicker and sicker, I was to the point where I couldn’t do anything. I had to use a wheel-chair in stores and had 50 pounds of water retention (ascites). My eyes and skin were as yellow as a sunflower. I was in and out of ER. Finally, I had to make the hardest decision of my life. Suffer for who knows how much longer and chance receiving a transplant (18 people die a day waiting for transplants). So I decided to take my sister up on her offer. After months of testing and doctors appointments, a biopsy and so many trips for my sister to San Francisco, we were ready to proceed. The date was set: August 12, 2011 I would receive the most precious, selfless and amazing gift anyone could ever give. And that anyone was my best friend and sister, Kelly.

The night before surgery was rough, my family and Coleman were scared, Kelly was scared as was her husband. I wasn’t really scared but more upset for Kelly being scared. And of course my parents had BOTH of their daughters going into a MAJOR surgery. I hated that Kelly had to go through this but at the same time was so thankful I would’ve sang it from the roof tops!

The day of surgery Kelly came out of surgery first. As Kelly came out they started to let my family know there were some complications with me. My family heard from the doctors twice during my entire transplant. What was supposed to be at the max an 8 hour surgery turned into a 16 hour surgery. One of the main arteries was not viable and could not be fixed. They took a vein from my leg and when that didn’t work, they called in plastic surgery and they took a vein from my spleen to try to make that work. That artery failed 3 hours after I got out of the transplant. With a failed liver transplant, the doctors gave me just a few weeks to live!

My parents thought that was the end of the story. They honestly thought they had to come see me with no hope, they sobbed for hours that morning before they came to see me. They put me back to sleep with meds when the artery failed, until they could take my breathing tube out because they were scared I was going to have a melt down when they told me that my sister went through surgery for no good reason and that the transplant failed. I didn’t of course, I have always had faith that God would get me through. I knew I was going to be ok. I was just so sad for my sister and I felt she went through surgery for no reason.

Then they let us know that I was going to be placed on the top of the liver transplant list in 5 states! Four long days later, they came to me and told me they had found another liver. It was just my mom and I in the ICU room. My then fiance, Coleman was out getting my favorite chocolate with my his mom (who flew from Georgia to be with us for my transplant). I was hooked up to so many things I could barely move. It was pretty crazy.

That is when my sister also let me know that I shouldn’t be sad, that I was moved to the top of the list and was able to receive a whole sized liver because of what she did. (She donated half of her liver to me which would have required a longer/harder recovery) I wouldn’t have been able to be where I was without her. She had the most positive outlook. I was so blessed. She took it better than I did, just another testament of what an amazing person she is.

It was pretty strange because I had all these feelings about the 2nd transplant. Sadness that my sisters liver failed, I was so sad for her! I was heart-broken for the family who just lost their son in a bicycle accident and that I was to receive his liver. Excitement that I was going to live. Anxiety that I had to have the same 47 staple incision cut open again and have vital organs removed, yet again. That is something nobody should ever have to do, let alone twice in their life! Let alone in 4 days!

The 2nd transplant went well, they were done in a record 4 hours! Quite the difference from the first 16 hour surgery. I love my new “big boy” liver. I call it that because in my MRI scans it is very large! It has been a long and hard recovery. But I am so blessed and everyday I am so thankful for every breath. Every hug I get and every little moment I treasure.

This wasn’t the first time I almost died, perhaps that is why I had so much faith that God would get me through. He has saved me from dying 7 other times (and those weren’t even health related, well ok one of them was)!! My God NEVER lets me down and has blessed me immeasurably.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Romans 8:28

Now I am ready to move on and live the life that my sister and my donor and of course God has blessed me with! I am back in school working on my nursing degree. I hope to become a transplant nurse. I get to do all the things I love again!

I just want to thank Kelly, though words would NEVER be enough, my donor and his family, again no words can describe my gratefulness. Coleman, who was there every second of every day catering to my every need, my parents who were always there, standing up for me, making the appointments, phone calls and being my advocates, especially my amazing mom. My other sister Kristin and my brother Kevin, that when my transplant failed tried to see if they could donate half of their livers to me…. and everyone who came to see me at the hospital, you will never know how much that meant to me, or if you sent me a card. It really is the little things that count. And of course all of the doctors, nurses and wonderful staff at UCSF. What a WONDERFUL hospital!

I want to encourage you to live your life to the fullest. God has good plans for you, even if you can’t see them right now. He really does work all things together for good and He loves you. Just as He saved my life with a transplant, He saves you everyday from things seen and unseen. He is there in that sunset and that quiet voice at night that says, “You are amazing” You have every right to believe that because you were created in Gods image.

Happy Love

Today is my sisters birthday, Kelly. She was almost born on Valentines. She has a heart shaped birthmark on her foot, it’s awesome. Guess we know part of the reason she has such a big heart, she was almost born on love day (2 hours late). Life is good!

47… long gone!

Two days ago on Tuesday, I had my 2nd clinic appointment. Traffic was horrible, we woke up at 5 and didn’t get there until 9:30am! 4 1/2 hours of traffic… I got my 47 staples, slowly but surely, removed!

The doctor was a little worried about one of my labs. My alkaline phosphate has jumped 40 points since I have been home from the hospital. Alkaline phosphate is a liver function lab. He said it could either mean rejection or regeneration. I say it is the latter and not the former! But he said they are going to keep a watch on it. My TAC level was a bit low again at 5.7. They increased my anti-rejection medication, prograf, again! They have increased it every week since I have been home. Prograf is so hard on the kidneys, they want me to drink 64 ounces of water a day! Do I look like nemo? I don’t think so! The doctor was very impressed with my progress. Instead of going back next week like I thought, they told me I don’t have another appointment for a month! I am free from San Francisco for a whole month!!

I am finally feeling better, I have my energy back, it may not be a ton of energy but I am able to get up and do things again like I was last week. I think it may have been a bug going around. My brother was totally exhausted too for no apparent reason and with no other symptoms. Oh, I have some more good news!

Two nights ago I slept on my back (not propped up on 50 pillows) for the first time! My back pain has been horrible lately (my body/muscles were totally relaxed for 20 hours on a hard table… I am sorry back!). Other transplant recipients told me to try sleeping on my side. So last night I slept on my side! I think I need to make a post with pictures on how to do this, it took me 10-15 minutes to figure it out haha! It did hurt my incision a little though, but my pain pills cover incision pain where as they don’t touch my back pain, so it was worth it, and it did help take some of the pressure off of my back. Though, doctors and transplant patients say the pain can last up to 6 months. Others have suggested acupuncture, stretching and standing up straight regardless of incision pain. But, the good news is that I made progress.. sleeping on back, side… 3 weeks ago seemed impossible!

I almost forgot… so my staples are gone! It was slightly painful/uncomfortable. A few, 5-6 of them, hurt though because my skin had healed around them and my Nurse Practitioner had to yank them out. She is so sweet though, I really like her. I was so thankful Coleman was there to hold my hand. My staples were so red and angry, especially on my right side, that is the only place I have a “real” scab, the rest are very superficial scabs. They said I have healed up really well.

I want to take another picture soon of my awesome rainbow scar. It looks so good without the staples. It seems like it has been more than 3 weeks since I have had my transplant. The hardest part has been the expectations from myself and others. There are good days and bad and I pray that the good would soon greatly outnumber the bad. But even my bad days are good because I am so blessed.

PRAYERS:
If you could please keep my niece Bella in your prayers. We recently got some very difficult news… that is all I will say for now until we know more. She is so sweet, beautiful and she is only 2 months old. She needs a miracle though. And I know first hand that miracles are God’s specialty. Also, if you could pray for my back pain and that Kelly’s incision would heal up faster, she is having some issues with it. We are only looking like slight hunchbacks these days though, so that is good news.

POST TRANSPLANT PATIENTS:
For those who are reading and are post-transplant… I will try to explain how lay on your side to alleviate back pain. First lay onto your side on a big giant pillow (laying straight back hurts those stomach muscles that were shredded). Then roll onto your back. Pick a side (no, the liver side shouldn’t hurt more than your left), whatever side is more comfortable for you. Then put a long/big pillow pushed up against your back. Hold onto bed and pull yourself onto your side. Put a firm pillow between your knees and have a pillow or two to cuddle with. That is the art of sleeping on your side post-transplant. I am sure I confused you, honestly it will probably be different for everyone but I still would have liked for someone to try to explain to me how to do it.

Stress & Sickness

I have been extremely stressed, not only is the transplant drawing near but there is a lot going on in my family (health issues). This morning I woke up with a bad sore throat, stuffy nose and now I have a low-grade fever. I think they will cancel the transplant if I am sick… I need to get better and fast. I am taking vitamin D, apple cider vinegar, elderberry throat spray, zinc lozenges and I plan on starting salt water rinses. I also need to get more sleep. Anxiety causes havoc in my body. I would really appreciate your prayers, I need to be well ASAP! I know it is all in God’s hands though and He works all things together for the good of those who love Him. Only 4 more days until I am admitted!

If you want the peace that passes understanding, you have to give up your right to understand. -Bill Johnson

Pre-Op Appointment with transplant surgeon! Questions answered.

Good news… our surgery date has been confirmed…

August 12th, 2011 I will get a beautiful new liver!

On Thursday Kelly and I (and my mom) had our pre-op appointments with our transplant surgeons. It went very well and I got so many of my questions answered. Kelly and I were able to combine our appointments with my surgeon. Because he is head of the transplant team he also sees the donor. Normally his pre-op appointment with the donor is separate from the recipient. His wife, another world-class liver transplant surgeon, will be performing Kelly’s surgery. So Kelly also had an appointment with her.

New info-left lobe
He spent about 45 minutes with us. I learned that UCSF has now started to use the donor’s left lobe of the liver. This is the smaller lobe/piece of liver, about 40%. They have found this decreases the risk for the donor. Although, it increases the risk a little for me, I will gladly take risk if it takes it off of Kelly! In taking the left lobe, I will be in ICU a little longer and recovery might take longer than with a right lobe. They have done about 20 left lobe transplants so far. The risk with the left lobe is that because it is such a small piece of liver, if there is too much blood pressure going through the portal vein (main liver vein) then the liver will not regenerate to full, working size (it won’t grow).

What they do to fix this is once they have “installed” my new liver (well, a portion of Kelly’s liver), they measure the blood pressure in the portal vein. If it is too high, then they need to re-route some of the blood to the vena cava vein. In doing this, it decreases the blood pressure going in to my liver so that my new liver piece can regenerate and in most cases the re-routing of the blood works itself out in time. The good news is that he said Kelly has a pretty good sized liver so hopefully everything will work out without having to re-route the blood flow.

Kelly will keep the larger right lobe and I will receive the smaller left lobe

Other questions we had answered:
Pain Killers:
Donor- Kelly will be getting an epidural that she will be able to control, for up to 3 days. They will then start giving her oral pain killers. The reason for this is because the donor usually has quite a bit more pain than the recipient. Part of the reason for her increased pain is because it is her liver that is being “cut” and the other factor is that my anti-rejection drugs/steroids apparently will help reduce my pain.
Recipient- I will most likely be getting an IV of morphine or dilaudid for a few days and then I too will be put on oral pain killers.

Length of stay:
Donor- Kelly will be in the hospital anywhere from 4-7 days.
Recipient- With the left lobe making my recovery a little slower, I will be in the hospital 7-10 days.

Wound Closure:
Donor- Kelly will probably be getting glue and her incision will be smaller than mine and a different shape.
Recipient- I will be getting dissolvable sutures on my muscles and then staples to close my skin up. Also, if possible, they won’t be doing the typical upside down Y incision you see on most liver transplant recipients, they have found that if they do an upside down U that the wound heals faster. Kelly will have a straight line, I will have a rainbow! :p

Pictures!!
I asked if I could somehow get pictures of the surgery. My doctor said “sure, just to buy a disposable camera and give it to one of the surgery nurses that will be in the room”! Haha He also said that once I am coherent (so that I would actually remember it) that they could bring me my cirrhosed liver to see. He said he had one patient take her liver home and keep it in her freezer!! Nasty!! That is where I draw the line. THEY can keep it….I just want to see it.

I-pod/Music during surgery:
I frequently have bad reactions to narcotics. I get every side-effect in the book and I have a tendency to be easily stressed too. In doing some research I found that people that listen to classical music during their surgery require less anesthesia to keep them under, have faster recovery times and less side-effects! So I asked if I could listen to my i-pod during surgery, he said yeah, he has had patients do that before…. whatever makes them happy. (So hopefully I won’t have hallucinations, severe intense itching, mood swings, nausea/vomiting, crazy cottonmouth and confusion. Like I said, I get lots of side-effects; so does my grandma… strange, but Kelly doesn’t, lucky girl!)

Medications post-transplant:
Donor- Kelly will have pain pills to take home. They say that the average need is to be on them for 3 weeks and then hopefully just at night for another week or so.
Recipient- I too will have pain pills after leaving the hospital. I will also be on Cellcept and Prograf as my immunosuppressants/anti-rejection meds as well as Prednisone (steroid). My surgeon said that hopefully I can get off prednisone within 6 months-2 years. I will quickly get down to only 5mg of Prednisone, which isn’t enough to give me the typical steroid moonface! Yay!

Visitors:
As long as we have private rooms (please pray that we do), we can have one person stay with us at night. When I am in ICU for the first few days visitors are very limited. Kids have to be screened by a nurse before they can go in (to make sure they aren’t sick because I will be on immunosuppressants). Also, they don’t allow flowers/plants (boo). Something about the possibility of bacteria being in the dirt/plant.

Mail/Get Well Cards (for those who have asked):
Physical Mail Delivery
During our hospital stay, mail will be delivered to our room each day. For prompt delivery, please address letters and cards with our room number and the words “Patient Mail” on the lower left corner of the envelope. Mail will be forwarded to our home address after we have been discharged. (Hopefully we will know when we are admitted the day before surgery what our room numbers will be.)

The addresses for the hospital is:
UCSF Medical Center
505 Parnassus Ave., Box 0208
San Francisco, CA 94143-0208

Other:
Both Kelly and I received packets regarding our surgery that may have pertinent information for anyone who is going to be having a transplant. I will try to look through it and add a post of anything I think may help other cirrhosis/transplant patients. I know it has helped me so much to talk to other transplant patients and to read their stories/blogs. A special thanks to Kelly (not my sister), Melissa and Nancy for sharing your transplant stories with me/us and answering all of our questions with kind and loving hearts. It means a lot!

“Wisdom is nothing more than healed pain.”

Kidney Infection?

Today I woke up feeling ok but as the day progressed I got extremely shaky, started sweating, got really dizzy and nauseous (same symptoms I had at diagnosis of kidney infection 4 days ago).  I just keep wondering if I need to go to ER or not… when you are this sick it is so confusing as to when you need to go to ER because something so little could be something huge.

Kelly had her first full day at UCSF today. She had a consent for evaluation with the donor coordinator, meeting with the study coordinator, met with financial counselor, blood typing and lab work, abdominal cat scan and CT with contrast and had to watch a donor video. She spends all day tomorrow and Thursday there as well doing more tests to qualify as my liver donor. Thursday I will be going to UCSF too with my family (mom, sister, Coleman and I). We will be watching another informative video regarding the transplant.

Decision to Move Forward with Living Liver Donor Transplant

Hey everyone! For those who don’t know, this is Kortni writing the blog. My amazing, selfless sister Kelly is going to be donating part of her liver to me!

Why a blog? So I thought I would make a blog so people can keep up to date on what is going on and hopefully help others who are going through the same thing as me and don’t know what to expect. I guess I will try to make a long story short and do a quick back story.

In March 2007 I went to the emergency room where I was then admitted to the hospital and diagnosed with cirrhosis of the liver. This was pretty shocking seeing as how I’m not a druggie, alcoholic, etc. About a month later they finally diagnosed me with autoimmune hepatitis. However, after that diagnosis from Kaiser, I was sent to UCSF where the doctors concluded that I may be part of the 5% of unknown cause of cirrhosis because I don’t have all the autoimmune markers to fit perfectly into the autoimmune hepatitis group.

My passion is natural health. So for 4 years I was able to put off having a liver transplant by using natural health. Some of these methods included clay baths, castor oil packs on the liver, milk thistle, alpha lipoic acid and other vitamins, herbs and nutrition.

Last October 2010 I started going downhill. I began having extreme fatigue as my thyroid took a crash. About 4 weeks ago I started gaining water weight (ascites), fast. To the tune of 1-3 pounds a day. I have also lost, well I would like to say weight, but I guess the more appropriate term would be body fat because I actually weigh more due to the ascites. I gained 30 pounds in about 2 weeks and in the last week to 10 days I have lost 25 of it. That is a lot of work for my kidneys! Which would probably explain why I got a kidney infection a few days ago.

I was able to loose the 25 pounds by having a paracentesis done (where they insert needle into abdominal cavity and drain off the excess fluid). They were able to get 3 liters. 1 liter is about 2.2 pounds. The rest of the weight loss I can give credit to my crazy high doses of lasix but most importantly, I am seeing a homeopathic doctor who after some trial and error, we were able to find a homeopathic remedy to get the weight off!

Now I am just trying to kill the kidney infection without gaining weight back, which doesn’t seem to be working. I have gained about 5 pounds of it back. I’m sure this is crazy complicated to those who have no idea about liver disease and for that, I am sorry. It seems my brain doesn’t think as clearly these days.

My MELD score has been pretty consistent for the last 4 years, it has maintained at 14-15. A few weeks ago, about the same time I started to develop ascites, my MELD jumped to 19. In case you were wondering….The Model for End-Stage Liver Disease (MELD) system is a way to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.

So, with the new turn of events and my jump in my MELD score, I have decided to move forward with getting a living donor liver transplant from my amazing sister, Kelly! She qualified two years ago to be my donor but because it has been so long UCSF is requiring her to do all of the tests over again.

As of right now, UCSF has given us a time-line for the transplant surgery date of somewhere around the end of July. I’m so excited, I can’t wait to live a normal life! I’ve been engaged forever now and just want to get married and move on with life. However, God has been so so good to me! His blessings every day are endless and I still can’t believe that my sister is willing to give me a piece of her liver!

 

About living donor transplant: They will completely take out my cirrhotic liver and then cut Kelly’s liver and give me 60% of it. Within a matter of 6 weeks-a few months both pieces of the liver will grow back to 100%. The liver is the only organ in the body that regenerates! Amazing…