Learn, Live, Hope
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| Learn from yesterday, live for today, hope for tomorrow. |
I have heard this quote many times throughout my life, but yesterday this quote became eye opening for me.
Yesterday was a day of mixed feelings, ups and downs, tears and laughs, heartbreak and of course happiness and smiles.
I learned quite a few things that I would like to share with you all. So we are going to play a little game called "Yesterday I learned..." Ready?
Yesterday I learned that Trader Joes is quite possibly the most incredible grocery store on the planet.
I had been to Trader Joes before, but ever since I've gotten into this healthy craze, this store has brought such happiness into my life. I love healthy food. I love the way it makes me feel and I'm definitely learning a lot by choosing to live a healthy lifestyle. It's a good thing they were out of cookie butter! My liver is better off without it anyway :)
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| First time at Trader Joes in 2009. Can you see the excitement!? Now times that by 14 and you have the level of excitement I had yesterday :) |
Yesterday I learned that a little humor goes a long way.
I was so nervous walking into the University of Utah Medical Hospital Liver Clinic. I wanted to pass out... The man at the front desk asked me if I had any Hispanic ethnicity in my background. I told him I was 1/16 Mexican (which is totally true!) and my mom and I chuckled. He, being Hispanic himself, then looked up at me and said "I knew we had a connection there" or something along those lines. It was funny for me, guess you had to be there...
Yesterday I learned that patience really is a virtue, especially when dealing with doctors offices.
Now I've had my fair share of doctors appointments. I feel like all we ever do is wait and wait and wait and wait and wait and wait and wait and wait. And for those you who don't know, that is a virtue I am working on. I was better at it yesterday... sort of. First off, we had waited 6 months, yes, SIX MONTHS to get in to see this guy. That's how important this man is. The funny Hispanic man at the front desk mentioned to us right as we got there that the Dr Box was on time today and that he should be back fairly quickly. I was very happy about this :) 45 minutes later, we still had not seen the doctor. The nurse comes in and asks "So...when did you say you made this appointment? There seems to be a problem. The doctor isn't here right now.... We could squeeze you in next month?" You can imagine the feelings I had. I had waited 6 months and 45 minutes to see this guy and I did not want to wait another minute, let alone another month! I excused myself, went the restroom, looked at myself in the mirror and told myself to calm down but the tears came anyway. I had so many questions I needed answered. I felt crushed because I had built this up in my mind and now I had to wait even longer. I was being a bit dramatic is what was really going on haha. Anyway, Luckily when I came back out, the nurse said that the doctor was on his way, to go grab some lunch and he'd be there within the hour. I really need to work on being patient... and maybe not being so dramatic?
Yesterday I learned (and continue to learn everyday) how much I really do love my parents.
My mom calls me her "biggest baby", which is totally true! She comes to every appointment. She holds my hand through every blood draw. They have been there for me, by my side, every step of the way. We ate lunch together while waiting for the doctor. I couldn't ask for better, loving, giving parents to be my greatest supporters and cheerleaders. They are my shoulder to cry on, my supporters without complaint, the loving hands that wipes away every tear, the arms that hold me in times of sorrow and the humor I need in times of true sorrow. When I am in pain, they hurt, when I cry, they cry. They are there for me through it all. I would not have made it this far without them.
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| My wonderful parents :) |
Yesterday I learned I have a wonderful Liver Specialist :)
Dr Terry Box M.D. really knows his stuff. He might look goofy, but he is all business. He was so great! I met with him when I was first diagnosed with Cirrhosis back in 2008. He said being on the transplant list was a little premature. We needed to wait until I worsened. He and Dr Dickinson will be monitoring me very closely the next few years and I am so grateful I'm in such capable hands.
| Best part is, he was wearing an even crazier bowtie yesterday! What a funny man :) |
Yesterday I learned I do not have Cirrhosis....yet. I have (get ready for this mouthful) Diffuse Nodular Hyperplasia with Focal Portal Hypertension, which is basically Cirrhosis, so yes, I will keep telling people I have that haha I am very very bad with medical terminology. I can't understand anything doctors are saying to me most of the time. So basically it is a malformed liver that results in high blood pressure through the main portal vein into the liver. Ultimately that high pressure results in injury to the liver including Cirrhosis. It could be congenital, it could be autoimmune, but at this point we don't know and it's more than likely we will never know where it came from and why I have it. This is something that Dr Box wants to look into. Also this is crazy rare! There are very few cases, especially with someone my age.
Yesterday I learned pregnancy is a no go....ever.
That's right folks! This girl will have no children of her own. Kevin and I have looked into adoption, surrogacy and foster care options. We are excited to adopt! Still researching on the other two. We have some time though! We'd like to get Kevin done with school and my health under control before we have a little one. I know I will be a mother and I can't even wait until that day! Until then, I get to enjoy my niece and nephews :)
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| My sweet niece Lexi Lou! :) |
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| My darling nephew Steeler Boy :) |
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| My Nephew Baby Cal & Me In Heaven :) |
Yesterday I learned the medicine I'm taking is working miracles!
I am taking a Beta Blocker to prevent ascites which you can learn about here. When I was off them, the ascites came back. I have now been back on them since the end of last year and the ascites were gone within the first two weeks. Talk about miraculous! I take a pill a day, everyday. One thing that these doctors drill into your head is the importance of not forgetting your medicine. It is a huge deal, especially post transplant, that I do not miss one day. Anyway, Dr Box said that within the next 5 years I will break through the beta blockers and the ascites will come back. That is when they want me put on the list. Yes, as of yesterday I am no longer on the transplant list. Kind of frustrating... but I trust my doctors. They know what's best.
Yesterday I learned I will not make it through my life without a transplant or a surgery.
Dr Box told me yesterday I could live with my liver and a shunt surgery...maybe. Basically they take the distal splenic vein and attach it to the left renal vein. This would treat hypertension and varices. You can read about the surgery here. Dr Box isn't sure if my liver will become cirrhotic. That is another waiting game I guess...Patience Natalie, patience.
Yesterday I learned how important it is to donate your organs and how I can help others realize that.
Did you know that there are over 17,000 people in the United States waiting for a liver?
Did you know that in order for doctors to operate you have to have a MELD score of 15 or higher and people aren't being operated on until they are a 30because of insufficient livers.
Did you know the average time to wait for a liver transplant for a person with a MELD score of 15 or higher is 12-36 months?
I can't tell you how important this cause is to me. Please visit http://www.yesutah.org/ to become a donor today. Even if you have medical conditions, you can donate too! Help me to help others. Isn't that why we are here anyway?
Also I would like to invite you all the run with me! There is a Dash For Donation up in Salt Lake City on August 3. I would love for all of you to be there to run for such a wonderful cause! Let's do it together :)
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Towards the end of my appointment, I asked what I could do. Here are the 3 things he told me.
(1) Make sure you are vaccinated against Hepatitis A and Hepatitis B. Hepatitis causes liver disease and we wouldn't want to add to what I already have.
(2) Manage a healthy lifestyle. Fatty Liver is the number one liver disease in the United States right now. Meaning people are literally eating themselves to death. Luckily, I have no sign of a fatty liver. The doctor said, just like most do, eat healthy, exercise and make sure you are maintaining a healthy lifestyle.
(3) I need to make sure I properly monitored. Every 3 months is blood work and an annual scope to check on the varices.
Yesterday I learned that I am not alone in this journey.
I had the wonderful opportunity yesterday to meet Tyla Newbold, a liver transplant recipient 16 years ago. She and her sweet mother Theresa (I didn't realize how cool it would be to have a mom named Theresa! ha! I love it!) met my husband and I for dinner in Sandy. It was such an incredible experience. I had so many questions and needed so badly to not feel so alone in this. Don't get me wrong, there are a lot of people around me who love and care about me and what I'm going through, but I didn't realize how much I needed to be understood until I met Tyla and Theresa. They were so inspiring and so uplifting for me. They made me feel strong in a way I can't really describe. It was a very spiritual experience for my husband and me. They brought me a hope I haven't felt yet and really were an answer to prayer. I know we will be life long friends and that I will look to Tyla as an example as I go through this trial.
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| At dinner with Tyla & Theresa. What an amazing experience! |
Yesterday I learned a lot. That's what life is about. Learning, growing, taking adventures, risks and taking one trial at a time, one step at a time. This isn't going to get easier, in fact I know it's going to just get worse. That doesn't change my attitude. If there's one thing I've learned through this whole process, it's that Heavenly Father is there for me. He knows who I am. He loves me and He knows what He's doing. I have no doubt in my mind that I am going through exactly what God wants me to go through and that through faith, through perseverance, I am going to be not just fine, I am going to be great.
A friend recently brought to my attention one of his favorite quotes, which is also one of mine.
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There will be storms, there will be times I fall and can't help but cry, but I Learn From Yesterday
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| It's okay to not be okay. Being sad is part of being human. |
Part of the journey is learning to make the most of everyday. Live For Today
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Tomorrow is a new day full of new adventures and new reasons to smile. I will Hope For Tomorrow because life is too short to not be happy.
And after all;
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Well said Sister Hinckley... Well said :)
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