Tuesday, January 31, 2012

Another Trip to Maryland Coming Up!

Dearest Friends and Family,
I wanted to tell you what is going on with me. Some of you may know and others do not, but you will soon know so I wanted to update everyone.
I became really sick about 2 weeks ago, and landed in the hospital. Well to make a long story short, I ended up very ill, vomiting and nausea and I haven’t eaten anything at all, so I was throwing up bile (sorry for the grossness!) Anyway, the doctors here in Texas put a NG tube in my nose going to my stomach to continually pump it out, which help. They were going to do a surgery here to put another tube in my stomach so I could drain it on my own, but my doctors at John’s Hopkins were consulted, and they really think they can do some other things for me. They are iffy and have some chance of working, but it’s not a 100% guarantee, but they want to see me right away and help me because I’m so ill.
I’m at the point right now where I’ve officially lost about 50 to 55 pounds and on the surface, I look pretty good. I just am ravaged and so sick and nauseated so badly all of the time on the inside. I feel so weak and last week I literally could not put the phone to my face to talk. It was that bad. But Kevin was with me by my side and I was so happy to have him with me.
So I say that to tell you that I am making an emergency trip home to Maryland on Thursday of this week. I will be there until they decide what to do at this point. They likely are going to want to consider a Gastric Pacemaker, which may or may not work. They will also be doing minor surgery to take my gallbladder out. They also may look at my pancreas, but I don’t know what if anything they’re going to do with that right now. If some of these things don’t work, I may end up with the G-tube, which is a tube to drain my stomach. That may be last resort. The pancreas procedure would be major, and I’d have to be pretty sure that that is what I want.
My goal is to be able to eat again. In my current state I am constantly nauseated. I vomit regularly if there is any kind of intake. I feed on my feeding machine. We are also getting hassle from the insurance company. Since September, they don’t want to pay for my feedings. We are worried because they are expensive, but they are the only way I can survive, so we have to have them. They don’t want to cover them because it’s a formula and they say it’s a supplement. It’s not…it’s what I live on. I can’t live on regular food. Anyway, it’s a mess. We need your prayers right now and God’s true intervention.
So many of you have been like angels to me. You all are precious and you are in my prayers. If you’ve ever asked me to pray for you, you can bet your name is in my prayer journal. Even many people I don’t personally know, I pray for if you mention them to me. I believe that prayer changes things. I need to do even more of it. Sometimes it’s hard when you’re sick, but everyone hurts and everyone has trials. This is just mine. And I thank you for walking through it with me.
Thank you for the calls, letters, emails and friendships. While I’m in Maryland/Virginia, it won’t be a luxury, pleasant vacation because my heart is here in Texas. I am so fortunate to have the best family in the world. My mom and dad and sisters take such good care of me while I’m there, but my heart is here, or at least the man that holds my heart is! Kevin has to work so I can have insurance so that I can get the treatment I need. But he and I worry and we love each other. We’re all we’ve ever known. Taking care of me is like breathing to him. He told me that he loves taking care of me. I don’t know why, but I am so in love with my husband. I really am. He is the light of my day, and I hate being away from him for 2 seconds. Thinking about possibly being gone for a month or more breaks my heart. Hopefully he can fly in for a long weekend or for Spring Break or something. Plane tickets are a lot, but we’ll manage.
I say this to say please pray, thank you for being my friend and thank you for your encouragement. God sure is good to me. Even through these trials, He’s opened my eyes. He’s brought into my life new friends, and I am so happy despite what I am going through.
Chronic illness is so hard, but I’m among those most blessed and many of you are my blessings.
Thanks for your prayers. I should have internet access here in Maryland when I get there later this week so I will try to keep updates now and then for you. My appointment at Hopkins is Tuesday afternoon.
I love you always,
Ami McCarty

Saturday, January 14, 2012

My Latest Update!

Dear Friends and Family,
I haven’t updated my blog in a while, but I was up tonight and I couldn’t sleep, so I had the urge to write. I wanted to update you on what happened during my last doctor’s visit to Hopkins.
I had been putting off writing the blog because I don’t have a lot of great things happening health-wise and I don’t like dampening peoples’ spirits. When people think of me, I don’t want them to think of negative things. I want to be a positive force in peoples’ lives. I try my hardest to keep my chin up and muddle through my health problems. What is going on with me is hard to comprehend, hard to explain and tough to walk through. But if you have a few moments, I’ll share what’s been happening with me and my prognosis.
Most of you know that I have Chronic Pancreatitis. The doctors can not understand why I have it, or how I got it, but they all believe it is because of the Connective Tissue Disease (lupus) that I have. It’s attacking my pancreas and such. I also have Gastroparesis, which is a term that means the slowing of the stomach. I have 2 problems, both of which are hard to fix.
I went to the John’s Hopkins in December. I have lost more than 40 pounds as I’m not eating much of anything, and just tube feeding through my feeding tube, which is called a J-tube as it is in the small intestine. I’m down to just a small maintenance dose of prednisone, my steroid medication. I have a pain pump now, which is working, but still needs some tweaking to get it to the right level of medication for me. All of these things are great and they were pleased with all of my progress.
But the big problem I have is that I am not able to eat. When I eat (or drink some things) I get very nauseated and soimetimes I’ll throw up. The simplest things make me sick. At one point recently, I was allowing myself little treats…a small cookie or something every day, but even that would make me sick and I would feel the intense squeezings in my pancreas area. If I eat ANYTHING, I am so sick. So now I’m trying my best to just drink water and tea and coffee and that’s it. The doctors only want me eating ice chips and feeding on my machine. That’s so hard to do, so I allow myself a bit of leeway on my beverages.
Anyway, to get back to things, I had a CT scan done in December when I went back to John’s Hopkins in Baltimore. I see the head of the pancreas division and so I know I’m in good hands. He’s a brash person when it comes to dealing with things…he’s matter of fact, but that’s not always bad. He basically said that he doesn’t think I’ll ever be able to eat normally again. My pancreas is diseased and the only option for my pancreas is to actually take it out. BUT that is a severe and drastic operation. He only has a handful of patients that have ever had their pancreas taken out. It is not something that you do lightly. And I could be worse, not better than I am now. If they take the pancreas out, I will have severe diabetes. I’m already a diabetic, but I would be a far worse diabetic. My pain would likely go away, but I could get infection and other stuff from having the pancreas removed. He told me that he’s just not confident that he would want me to do that. My stomach doctor agreed. She said that she might consider putting a gastric pacemaker in me so that my stomach would move. The problem is that even if I get the pacemaker (which doesn’t have a high rate of success), I would still have pancreas problems and pancreatitis. So it doesn’t make sense to do that.
So basically they want to see me on March 6th back in Baltimore and they are going to discuss if I will have my pancreas looked at further and see if any surgery is possible. I just don’t know at this point. I am frustrated because just this week I was in the E.R. with pancreatitis pain again. Right now, I am having flares of it. As I said before, I was taking a bite here and there of things, but that triggered the pancreas and I got pancreatitis and ended up in the hospital. So I’m back to water and even though I’m not supposed to, I can’t live without coffee and tea.
So that’s it. I go back to Baltimore in March. We will decide about surgery then. I just can’t see myself living the rest of my life without eating. But I don’t know if I want to have the pancreas out either. I just want to do the right thing.
Am I complicated or what??? 
Saying all this, I know that with one touch, the Lord can Heal me. I believe in Him and His power and I want His healing hand. I need Him to touch me and make me whole. I will serve Him no matter what, and I know He wants to bless His children. I just pray for a miracle and if He decides that he doesn’t want to do a miracle, I pray for God’s wisdom to help me and Kevin know what to do!
Please pray for me how you see fit. I just need the prayer. Especially PLEASE pray for me to be able to resist food and not want to take a bite here and there. I need to stay away from food, but I don’t want to miss out on family get-togethers and stuff. Kevin and His family are so wonderful and accommodating to me. So are my parents. They all hate eating in front of me and they make me feel as comfortable as I can be. I will leave the room if seeing the food bothers me too much. Sometimes I’ll just wait until everyone is done eating. My poor husband doesn’t have any food in the house. He eats out at all times because I’m so tempted. I keep his favorite snacks in the house, and I’m not tempted because he likes things that I don’t, so that’s okay! He is such a kind person. Once I caught him eating in the car, so he wouldn’t bring it inside and make me smell it so it wouldn’t make me hungry. Isn’t that sweet? I just love my sweet Kevin!
It’s funny how you don’t realize how important something is until you can’t do it…eating is such a part of life and it’s the hardest thing not to eat. I’m so hungry all of the time. BUT I’ve got to remember that the consequences are worse than not eating. I hate being in the hospital. I hate pancreatitis.
I hope that I haven’t discouraged anyone. I’m not discouraged. I just don’t know what is next. It’s easy to tell myself that I can not eat for 2 more months, but It’s a lot harder to hear, “you may never eat normally for the rest of your life.”
Please never stop praying for me. I know prayer changes things.
Also know that NOTHING can steal my joy. Not this, not anything. My faith in my Savior Jesus Christ is all I need to make it through anything. I have the best of everything. God has been so good to me. I know that His way is perfect, and I’ve met some very great friends because of my health including my sweet friend Kayleigh and my dear Sheri, both of whom are walking through very similar situations as mine. I love sharing my life with them as they do with me. It’s comforting to talk to people who are ill and can relate to what we’re each going through. I pray for them daily.
I just wanted to share with you what was on my mind. Please keep reading and I will write more later. Pray for my next appointment, which is on March 6th at Hopkins.
I love you all. Thanks for caring enough to read this! You are special to me! And Remember…God is on the throne, and nothing is impossible when you put your life in His hands!
Ami McCarty