Tuesday, May 29, 2012

Wednesday March 28

 Today I went to the University of Utah Liver Transplant clinic. To be honest I was worried that it would be another useless appointment. I WAS SO WRONG! I love this clinic, the doctors, and all the staff! This is the first time I walked away with the knowledge of whats going on, what needs to be done, what will happen, and what to expect from the clinic, my appointments. The clinic is unsure though exactly what stage I am in. Either I am at stage 3, early stage 4, or in between the two.  Here is a picture of the different stages.

So after a 3 hour appointment I walked away a very satisfied lady. Monday I will be have a CT scan of my abdomen and Liver to try to see exactly what stage I am in and how much if Cirrhosis. The scan will also look for liver cancer. My biopsy did come back negative for that though so I am not worried. The doctor could feel all of my liver when she examined me. I have been uncomfortable most days with about 3 days a week being really uncomfortable.  Next week on the 13th I will be going to the Cardiologist to get some testing done on my heart. They did a EKG today. 

So I walked away with a PLAN.... I walked away with confidence I was going to be cared for. 
I need to stay away from sugar, complex carbs, and eat only full whole grain breads and pasta's. I need to up my intake of fresh vegetables and fruit. Not to bad. I have already been doing well in this area. I have lost about 20 lbs since November. It is frustrating though because I am not losing any in my midsection.....

Some things I learned....

 I was going to have a hysterectomy in May due to some uterine issues and the fact that I can not have anymore children due to the disease. They said if I was to get pregnant it would most likely kill me and the baby. I have not dealt with this yet on a emotional level I am trying to just push it out of my head. So anyways my last gastroenterologist said that it would not be an issue to get the surgery so I was planning on scheduling it soon.

 The transplant clinic said absolutely not (at least not for now) They let me know that abdominal surgery is very dangerous for people with advanced liver disease. It could throw me into liver failure.

I also was told to take no Tylenol at all. To take ibuprofen.

Again this is wrong. Ib is very bad due to the bleeding it can cause. So I was told to take Tylenol just no more then 2 grams a day. 

I was really excited about a liver function test finally being in the normal range. I told my doctor how excited I was about this and she agreed. Well this is how my new doctor explained it to me

 when your liver is under stress the cells open up and let out a hormone. The hormone then shows up in your blood tests to show there is damage being caused. Well the fact the my test was in the normal range is BAD. It means my liver is so scarred there are little cells left to even cause the hormone to be released anatomy blood. 

 So I am happy I decided to go to the U. I finally feel like I will be taken care of and get all the help and encouragement I need. 

Monday, May 28, 2012

Fishing Trip

Today we went to Deer Creek with the Smith's. 
It was pretty cold and there was tons of people. 
The fishing started out good and within about 20 minutes I hear a thud... I turn and see Abigail's fishing pole fly into the lake. By the time I could have responded it was about 5 feet under freezing cold water. And with a blink of the eye it was gone. 

As we laughed poor little Abigail started sobbing. We couldn't laugh anymore. What a sad little girl
But lucky her Grandpa let her use one of his poles and she was back in business. 

Ben, Kayla, and Lisa
Kayla was the only one to catch a fish!

Laura & Sven

He was telling me "I fishin see"

 Abigail and Anna
Sharing hot cocoa.

 Jayden, Anna, and Abigail

Jayden was such a good little fisherman. I think he mastered casting out his pole!

I missed getting pictures of Grandpa and Don. By the time I remembered i had a camera it was time to go home. 

Can't wait to go again....

Monday, May 14, 2012

Zoo trip

Zoo Trip's

We decided this year to buy a annual Zoo pass. So many more to come. We have already been twice.  Fun times... 

*and if you want to go we with us we can get a few extra people in for free*

Monday, May 7, 2012

A few weeks ago I posted on my family blog about an upcoming liver biopsy. 

Here is what it said

Tomorrow I will wake up early and head to Intermountian Medical Center. I am a nervous nelly. I should not be, I have been here before. I am having my second liver biopsy done. I don't know if I am more nervous about the procedure or the results. I am praying that my liver has healed some over the past three years and I am not going to be staged at a higher number then what I already am. I have been really anxious the past year knowing that one day I may need a liver transplant. I read all the time that it is difficult to even make it to the list, and once your there your not guaranteed you get to survive. Also knowing someone will have to die in order for you to live. How does one live with that? Live the rest of your life to the fullest, be a better person in every aspect of your life, give all your got, be strong. Live your life for both of you. Have no regrets. Honor, honer, and honer!

Tomorrow will be a great day.

 The biopsy went smooth. Not as bad as I thought. Last time I had one Don was sure it was worse then this. They went in through the middle of my chest instead of threw the side by the rib cage. It hurt for a few days but nothing to bad. I was happy that they gave me some Versed before the procedure instead of waiting for them to start... I was much calmer...

 It was very frustrating waiting to get the results. I am either really lucky or really unlucky that my insurance posted the results before my Doctor even seen them. So as I read what pathology said I was scared, shocked, and had a lot of unanswered questions. I called my Hepatologist to see if I could get in sooner and of course the answer was no. What made it worse was that she would not talk to me over the phone about them. So I waited. 

I went today and seen Dr. Cobb. She was nice and attentive to most of my concerns. She disregarded the pain I have been having in my chest and sides as nothing out of the ordinary. I was a little upset about that. The appointment was also weird because she didn't just jump right in and like she usually did. We talked about all the medications I have been taking and about the stomach issues I have been having. After about 30 minutes she did a quick exam and I asked her if she was going to go over my results. 

She sat down at her computer, brought them up, read really fast and closed them. Then she brought up the biopsy results from 2009 and talked to me about them and walked me through. After about 10 minutes she brought back up the new one and said yeah, yep.... She left the room went and got a handout on the stages of liver disease and showed me where I am at. She thinks I am at the end of stage 3 to the beginning of stage 4. So.... YES I was freaking out. I had been for 2 whole weeks. I think I had been through every emotion already and was just waiting for it. She then said that they were scheduling me for a EGD to check for esophageal varices.  She was also at that point a little more concerned of the pains I have been having.  The whole appointment was just odd. I know she didn't even look at my biopsy results until that day when I asked her. She was defiantly not prepared. I didn't get any questions answered, and pointers on what to do from here.  

I have found a really great support group online and have learned more from others suffering with liver disease then I have my own Doctor.


So I will be getting a new doctor. I am going to the liver and kidney clinic at the University of Utah. The clinic consists of 14 Doctors and staff. They have transplant surgeons, Hepalologist, family counselors, financial counselors, dietitians, and so forth. We will see how it goes but I am excited to hopefully get the right care I need and some much needed education.

 So the next step is the EGD on the 27th.