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Dentist!?!

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I had my first dental appointment since my transplants. UCSF asks that you not have any dental work done for at least 6 months after your transplant but I begged because I didn’t want to miss out on this years benefits/coverage. I know, who begs to have dental work done! I have a lot that needs to be done though because I also have Lyme disease which destroys your teeth regardlessly of how well you take care of them.

In the past I haven’t been able to get numb at the dentist or best case scenario the numbness would last 30 seconds and then I would need another shot. I was of course terrified to go again this time because of the insanely barbaric memories I have of sobbing shaking while my teeth would get drilled on with no numbness (this includes not being numb for root canal). Nobody could go with me this time, it was me myself and I…. Well, Coleman was able to stop by for 5 minutes before he had to go to work and give me a hug and kiss. He is so sweet.

I told the dentist that I was confident that all it took was a new liver in order for me to get numb. And with that, the numbing shots began. He started with his best stuff, no playing around with little old lidocaine.

You know what? It was a lot better this time! It only took 4 shots and one during the middle to fill 2 cavities! I also had a bunch of people praying for me. It is my New Years miracle.

I understand why they don’t want you to have dental work though until 6 months out. It kicked my butt! I’m so tired! They also put you on antibiotics for a week before so you don’t get an infection. My mouth is still very sore for some reason.

I’m glad to have that done and over with! Now on to a New Year!!

March 2007- Cirrhosis Diagnosis

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March 3, 2007. That is the day that a nurse accidentally told me that I had Cirrhosis. I had been in the hospital a few days after going to the ER with internal bleeding and side pain. A nurse came in and said something about “your cirrhosis”. That was a shock, I asked her what she was talking about and I could tell from the look on her face that she realized she made a big oops haha. Anyways, it is funny to see how much has changed in 5 years

I copied this from my old blog that I started when I got diagnosed with Cirrhosis.

Cirrhosis Blog
The last 5 days were spent in the hospital. Apparently, I have cirrhosis of the liver which is liver failure where my liver is a mass of scar tissue due to my liver basically dying) with portal hypertension (blood can’t flow thru my liver so I get high blood pressure in the veins in my intestines causing my veins to burst and internal bleeding to occur) and esophageal varices (veins bursting and creating bubbles in my esophagus, ouch). I am still waiting on lab results to see WHAT is causing my liver to fail… freak thing, hello I am only 21 and don’t drink, do drugs etc!!! Ah, but it’s ok… it is all worth it if my story of healing will help others and/or bring one person to Jesus as their personal saviour and friend!
The last 5 days were the longest days of my life. I’m not really in much pain (mostly just pure exhaustion, but I am so thankful for no pain!) so it went by so slow. And they poked and poked and POKED me a million times, both of my arms are black and blue because I have horrible veins that are impossible to draw blood and/or start an IV.
They actually infiltrated (the needle came out of my vein and went into my tissue) me with MORPHINE! My arm is still sore!
I had a cat scan, a MRCP (a type of MRI), an ultra sound, all kinds of lab tests, they sedated me and put a camera down my throat and they still want to stick a needle in me (while I am awake none the less) for a liver biopsy! Yikes! As of now, they are calling me their medical mystery. They even mentioned doing a liver transplant. It is frustrating and a little scary but I know that I will be able to use it in the future to relate to people in my healing ministry, whatever that will look like. I just want to know the cause behind all of it.
The cool part was God was there with me everyday in the hospital. EVERYTHING I prayed for He gave me. I had a huge room all to myself, a great nurse, good doctors, my mom was by my side the whole time (along with everyone else!).
I am home at my parents for a little while until I can figure out what exactly is wrong and then figure out a treatment plan!

PLEASE pray that the doctors will have wisdom and that God will give me patience as it seems that it is taking them forever to give me a diagnosis and that He will give me the answers and heal me quickly and show me my next steps because I am feeling lost and alone.

MARCH 12TH UPDATE:
I went to the GI specialist today at Kaiser. It was probably the scariest appointment yet. I really liked this doctor though, most Kaiser doctors suck, but he was pretty good. He drew more blood to test for cancer, more rare diseases (Cryptogenic Cirrhosis…. which is bad genes basically and Alpha 1 antitrypsin) and to see if my blood is toxic! He also wants to put me on a Liver Transplant list.
He wants me to weigh myself everyday to see if the ascites (fluid around the liver due to inflammation) gets worse, if I start gaining weight they will put me on diuretics. He also scheduled another endoscopy (camera down my throat) to see if my esophegial verisces is still bleeding, that will be next Monday. I’m not looking forward to it because they spray this awful stuff in your throat, its like foam and they make you swallow. In other words, they give you amnesia (ok drugs that just make you forget what happened which is kind of a scary feeling) If I get a chance I will put up a picture of my esophagus, it is so nasty. If they are bad he will have to put a band around the veins to stop the bleeding.
I wanted Dr.Marks (GI doc) to do a liver biopsy but he said he can’t because my plattelets are low and my blood doesn’t clot well and it could be life threatening to do a biopsy. Yikes.
The good thing is that if I need a transplant I could do a partial transplant (take part of someones liver). Both of my brothers, all three sisters and Shannon have all said they would give me part of their livers, aww yay I am loved! But I won’t need to do that because I am going to prove to those doctors that cirrhosis is reversible! Yep… tomorrow I go see Dr. Jaggy. He is my natural doctor (ok he is still an MD but he went to school in Switzerland and is way smarter than our doctors) and he will probably put me on some really awesome stuff. I will update more later!

March 13th Update:
Today has been the worst day I think. I have a really hard time falling asleep at night and didn’t get to bed til 3am last night, so I was really tired today and had to wake up early for Doc. Appt. But I did take a 3 hour nap and am feeling much better now.

I went to see Dr. Jaggy. He is a MD from Switzerland and is certified wholistic doctor, he was great today. He put me on a special diet. I will basically be following strictly GPRx but with no meats (I can have eggs, beans and protein powder).

I am taking Standard Process products http://www.standardprocess.com/sp_catalog_search.asp) AF Betafood, AC Carbamide, Betacol, Hepatrophin PMG and metagenics ultra inflamx protein powder. He wants me to continue with my Garden of Life Primal Defense (probiotics) and multi vitamin. I have a follow-up appt. with him in 2 weeks where I will hopefully know my diagnosis and he can be more specific, he said that he will do some more research. OH! And he said that he has a friend that has had great success with reversing severe liver damage/failure with alpha-lipoic acid IV treatments, he is going to ask the doctor for his protocol and use it for me. That is pretty much it for today!

MARCH 16th update:

Good news finally!! So Kaiser manteca lab had my test results but there weren’t on my file electronically so it created 48 hours of being transferred from lab to medical records to advice nurse to sending a message to the doctor, doctor saying well we don’t have your results and the cycle would begin again. Anyways, I had to go to Kaiser today to get my results AND…..

I DON’T HAVE AUTOIMMUNE HEPATITUS!!

Which is so great because autoimmune diseases just suck. So I am very thankful. BUT that means I still have no idea what is causing my Cirrhosis (no it’s not Hep A, B or C either)! So dumb. Thank you for the support, I have amazing friends and family.

March 20th Update:

Well I had another endoscopy yesterday. I was very annoyed with the doctor. I am taking probiotics and he said I had to take antibiotics. I asked why and he said in case of infection (dumb! If I get an infection THEN give me antibiotics) and I told him I didn’t want to and he said he would still do the endoscopy but wouldn’t tie off my veins if they were bleeding (the reason he was doing the endoscopy in the first place!), so I had to take them, wiping out all of the probiotics I have been taking. The good news is that he didn’t find anything bad. The bad news is they had to double sedate me and I don’t remember much of yesterday haha.

But I have come to realize how very blessed I am that God has chosen me to deal with this! He has picked me to overcome this, to give me a testimony of healing. “To whom much is given, much is required” Luke 12:48 I know this is just what is required in order for me to help others! God loves me so much and He is with me, yes it is hard and frustrating and sometimes I cry, but it’s ok because He is always right there for me. Like yesterday, he gave me a nurse that got the IV in right away (which, if you know me, you know that I hate needles with a passion and scream like a child if they do it wrong).

I am on a road to healing and I am learning a lot and I will get to use it to help other people on their road to healing. I do wish I could fall asleep quicker though, it takes me hours to fall asleep, thus I resort to writing a blog that Shannon and Trish are probably the only ones who read haha Ooooooooooh well… I suppose I should try to sleep as I have to drive to Redding in the morning, 9 hours of driving in one day… yeah I am really looking forward to that… OH YEAH! I almost forgot. Tomorrow my mom is going to call Dr Burt Berckson, he is the countrys best liver doctor. He is the one that has had great success with reversing liver failure with alpha lipoic acid! He has a 90% success rate of reversing Cirrhosis, even in advanced cases (though those are people that have Hep C, which I don’t have). He is in New Mexico, I might go there. We will see. All I know is that my parents love me and want the best for me and that makes me happy!I am sure they will want to do a million more tests on me come next week. Thank you for the support, I have amazing friends and family.

March 20th Update:

Well I had another endoscopy yesterday. I was very annoyed with the doctor. I am taking probiotics and he said I had to take antibiotics. I asked why and he said in case of infection (dumb! If I get an infection THEN give me antibiotics) and I told him I didn’t want to and he said he would still do the endoscopy but wouldn’t tie off my veins if they were bleeding (the reason he was doing the endoscopy in the first place!), so I had to take them, wiping out all of the probiotics I have been taking. The good news is that he didn’t find anything bad. The bad news is they had to double sedate me and I don’t remember much of yesterday haha.

But I have come to realize how very blessed I am that God has chosen me to have an awesome testimony! He has picked me to overcome this, to give me a testimony of healing. “To whom much is given, much is required” Luke 12:48 I know this is just what is required in order for me to reach thousands if not millions when I become a doctor! God loves me so much and He is with me, yes it is hard and frustrating and sometimes I cry, but it’s ok because He is always right there for me. Like yesterday, he gave me a nurse that got the IV in right away (which, if you know me, you know that I hate needles with a passion and scream like a child if they do it wrong).

I am on a road to healing and I am learning a lot and I will get to use it to help other people on their road to healing. I do wish I could fall asleep quicker though, it takes me hours to fall asleep, thus I resort to writing a blog that Shannon and Trish are probably the only ones who read haha Ooooooooooh well… I suppose I should try to sleep as I have to drive to Redding in the morning, 9 hours of driving in one day… yeah I am really looking forward to that… OH YEAH! I almost forgot. Tomorrow my mom is going to call Dr Burton Berckson, he is the countrys best liver doctor. He is the one that has had great success with reversing liver failure with alpha lipoic acid! He is in New Mexico, I might go there. We will see. All I know is that my parents love me and want the best for me and that makes me happy!

Pre-Op Appointment with transplant surgeon! Questions answered.

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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.

Left & Right Liver Lobes

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.”

Decision to Move Forward with Living Liver Donor Transplant

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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…