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Long Week and high WBC count

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Christmas is right around the corner. Wrapping presents, enjoying family, visions of sugar plums… well… make that birds dancing around your head. Because my head is pounding! Yep, I’m still sick. It started last week with a fever and sore throat and has morphed into a gnarly head/sinus cold. I had my labs drawn yesterday, they were all great! With the exception of my White Blood Cell count which was 8.8. A high count like that can only mean one thing, infection. I am guessing it is a sinus infection. I’ve put calls and emails in to my doctors, asking for an antibiotic (if they deem necessary of course)… So we will see. I don’t want to feel like this for Christmas. I wanted to bake and wrap and play with my nephews today. It does make me feel a little better because I was getting frustrated with how tired I’ve been. I have an explanation now! An explanation other than almost dying 4 months ago and Jesus stepping in and providing two awesome donors. TWO! There is so much to be thankful for this Christmas, #1 will always be God’s love and #2 is health because without it you can’t enjoy anything else! And of course so much more, especially family, Coleman, Bella-Grace being home from the hospital for Christmas! I pray that you would see the meaning behind Christmas and focus on what is important, making beautiful memories, telling people how you feel about them, treasuring every moment that God gives you.

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Sick Again

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I am sick again. I’m not quite sure if it is a cold or something else. I have had a fever for the last day, on and off. It’s actually really weird, my body can’t seem to regulate my temperature. I go into a cold room and my temperature drops to 96 and if I go into a warm room I get a fever. That just isn’t normal! I also have a sore throat, stomach pain, headache and a runny nose. I’ve also been battling some SERIOUS fatigue. It is extremely frustrating because I am supposed to be all healthy and happy now (well, I’ve ALWAYS been happy!) and I am so tired all the time. Coleman tells me all the time that I went through two huge surgeries but it’s been 4 months already, I want to feel human! I really hope it gets better, everyone says the first year post-transplant is really rough and from there on it gets easier (and those people only had one transplant).

I called the on-call transplant doctor last night because I had a temperature of 101. She said that I am ok for now, as long as my fever doesn’t go higher or my symptoms don’t get worse. I’m glad I didn’t have to go to ER (the symptoms I was having last night fit into the category of possible organ rejection). I need to go get my prograf levels drawn to make sure everything is fine. Other good news? Coleman comes home tonight!!

Bella-Grace Update
Bella-Grace was taken to Oakland Children’s hospital yesterday after being in the hospital in Reno for over a week, with pneumonia and on oxygen because she is having trouble breathing. They might need to put a feeding tube in her (she aspirates every time she eats, and it gets in her lungs and thus makes it hard for her to breathe). They will be running tests over the next few days to determine if there is anything else that can be done instead of a feeding tube! We are hoping and praying they figure something out and she is home for Christmas! Please keep her in your prayers, she is an absolute doll!

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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!

Recovering

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I am finally starting to conquer my cold! Well, I’ve been feeling better for a few days. I’ve been on antibiotics for it. I turned 26 on Monday (Nov. 21). I had a really great birthday! It was kind of weird turning 26 because I’ve lost so many years to being sick. Well, I didn’t lose any years, I invested my time into creating a testimony of Gods goodness! Really my whole life has been a testimony of His goodness. I’ve almost died 8 times! He saved me every time. I love Him!

I had my monthly labs drawn yesterday. My tac came back at 8.9 and my white blood cell count came back at 2.2 (low). UCSF decreased one of my anti rejection meds (myfortic) to try and bring up my white blood cell count. White blood cell count is a measure of ones immune function. I am happy to say they are still fine with me flying this week to go see family!

I really want to go into how thankful I am for EVERYTHING in my life but I need to rest up today. Have a wonderful and blessed Thanksgiving! And remember that thankfulness is the key to happiness!

 

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Cold, Prayer and Oakland Children’s Hospital

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I have my first cold since my transplant. This is something that I’ve been dreading because I hear they suck because my immune system is depressed and they can tend to stick around longer. However, I am believing for a quick recovery. Last night, I couldn’t even swallow without crying because my throat hurt so bad. I went and woke Coleman up and he prayed for my throat and sinuses. My throat pain improved about 50% as did my breathing. I am still quite sick but at least I can swallow without wincing! Thank you Jesus! I love that He hears our prayers and cares. The other good thing is that my white blood cells (which are indicative of my immune system) are what they were before my transplant, so I’m hoping I will be able to fight it off just as fast. Why am I so anxious to get rid of this cold? Well, for one thing it’s a cold and they suck… but also, my birthday is on Monday! Thanksgiving is Thursday and I fly to Florida next Friday! I can’t wait! (boo I miss black friday as I will be flying all day).

Also, since I slipped my rib last week, it is still hurting. It has been hurting so bad the last few nights I’ve slept in the chair. As do the wounds from where 4 moles were removed. My body is kind of an overhaul right now. I also have stress on top of it.

I had a comment on my last blog asking I post some about how I was diagnosed, my decision process in going forward with a living donor transplant, etc, etc. I thought that it was a great idea and I plan on doing so in the future. Possibly in December once, birthday, Thanksgiving and Florida/Georgia vacation is over!

I have a prayer request too. This time it’s not for me or my sister, it is for my sweet, beautiful 5 month old niece, Bella Grace. She was admitted to Oakland Children’s hospital yesterday for a week of treatment. She started the ketogenic diet in hopes of controlling her seizures, which have increased in frequency since yesterday. Please pray for complete healing for lil bella girl and for the family. The diet lowers her blood sugar so low she has to be monitored at all times as she goes into ketosis. Bella was born was severe vision problems and her brain didn’t fully develop which causes seizures and other problems. Your prayers are appreciated!

Update on Bella Grace from my mom: Pray for our precious Bella Grace. She’s in Oakland Children’s Hospital, needs monitoring for a very difficult, specialized diet, hoping it will reduce or cure her seizures. Her glucose dropped too low tonight, had to give apple juice, then it went way high, meaning we now have to almost start over, trying to get it down “again”. Nerve wracking to say the least…..Having seizures almost every hour is not fun!

Puppies and more!

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Here are some pictures of our new puppies! And just some other random ones… I love not having yellow eyes and pale sick looking skin anymore! Thank you Jesus!

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Dermatology

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I had my first dermatology appointment (since my transplants). It was with a new doctor, he was really nice! He looked me over head to toe and unfortunately found 4 moles that looked suspicious. He removed them all. Thankfully, one of them was on my stomach where I lost ALL feeling from surgery (the majority of my stomach has no feeling because they cut the nerves) so I didn’t feel that one! The others are hurting… Hey, at least I have the ability to get them removed now instead of worrying about them later right!

Also, if you will rewind about 5 months, you may recall (ok probably not, but go with it) that I slipped my rib out of place. Well, I did it again. I’m not actually positive that is what is going on but every 4-7 months I injure my rib and it hurts really bad (it can put me in bed for up to a week!). Maybe it is a pulled ligament, muscle, connective tissue… I have NO idea and neither do my doctors. I am hoping that one day they will be able to tell me why I have this but they don’t seem to care because it always heals and goes away, but it’s getting kind of old. All I have to do is put a tiny bit of pressure, say leaning on a counter and that is all it takes to make it “move/snap/hurt” whatever you want to call it. Also, for some reason, my pain killers (even really, really strong ones) don’t touch the pain. The blessing in it is that it is not a permanent pain, it heals! I am so thankful that I am not in long-term pain (like so many are, especially those with chronic lyme disease, I love my lyme friends and readers!).

On a more personal note, we got a dachshund puppy, Lucy! We are getting a little boy when he turns 8 weeks (Nov. 22), Lucas.

Here is a random picture from 2 weeks ago when my dad, Coleman and I carved pumpkins for the sole purpose of making them target practice haha… We had fun with the shotgun!


We decided it would be fun to carve pumpkins and then make them target practice right after. We had fun! I love my dad and good lookin man!