Dearest Friends and Family,
I wanted to let you know basically what is going on and what will be happening with me for the next few days and weeks.
I am going to be admitted to John’s Hopkins on Monday 3/13. They are taking out my feeding tube (J Tube), because it was infected. Apparently, once you get an infection inside of the tube, It doesn’t clear up and you have to get it out and let it heal before you put another tube in.
They are going to take out the old feeding tube and put in a central line which is like a temporary port going through your chest. I will be able to get fed by an IV to my chest until April 3, which is the date for my surgery. Home health will have to come every day to administer the food and make sure things are sterile and that I’m okay. I will pretty much be homebound from now until April 3rd.
Of course, Things may change (as they always seem to with me!) but for now, I am scheduled to have the pacemaker surgery on April 3rd. They are planning to put in a pacemaker to see if that will help my stomach move and improve the nausea. If it does, then they’ll count it a success, and I may try eating something small. But they are still afraid that my pancreas is going to flare because I have chronic pancreatitis. They are not sure if, when I eat again, it will resurface. If it does, or if the pacemaker is NOT successful, they will do a surgery to take out most of my stomach and pancreas. They want to try the least invasive first, and then move on to more riskier surgeries if need be. They are not going to let me go home; however, until my issues are resolved.
I know and have a peace that I am in the right place. It’s just going to be hard for the next 8 weeks to 2 months or more. Please just pray for me that God will work His will and way and that things will work how they are supposed to according to His plan!
Kevin has been here in town visiting and we were able to go to the National Harbor in Maryland, nearby Washington, D.C. and Alexandria, Va. It was beautiful and breathtaking, and a wonderful time together. I loved every minute of my time with my husband. These next few days in the hospital will be hard, but I will have God holding my hand and my husband’s hand there too. Not to mention, the prayers from my family and friends.
I also feel so badly for my parents and family. They are all pitching in to take care of me…my mom and dad as well as Cherie and Betsy. Darla is in the hospital herself very pregnant with twins, so you can imagine how all of this news is affecting mom and dad. I know they are worried for both of their daughters, and they have their own struggles. It’s hard for me to not feel guilty for putting so much responsibility on them. I know they love me and are so thankful I am here, but it still is difficult, nevertheless!
Thank you for praying for me! My prayer is that I will live with all joy because I know that ALL things work together for Good to those who love God! And I do love God!
And I love you all.
Keep praying and don’t stop.
GOD IS SO GOOD!!!
Saturday, March 10, 2012
Saturday, March 3, 2012
Short Update 3/4
Well everyone!
I thought that I would write a quick blog. I can’t sleep tonight, so I have decided to write a little blog to keep you updated on my progress while I’m here in Maryland. This is very abbreviated. My condition, as most of you know, is very complicated, and to those who want to know more, I am always happy to tell you. This is just the basics of what I’ve learned thus far, and what I am getting ready to face at the doctors during the next week or two!!!
I’m actually getting very excited. I only have 4 more days until Kevin comes to Maryland for a week’s visit with me! I am really thrilled to see my sweetheart after a month of missing him.
As everyone knows, I haven’t been eating at all. I can drink some liquids but that’s pretty much it. I will sip a milk shake now and then, but I pretty much stick to my tube feedings. That’s the only way that I can guarantee control of the nausea, vomiting, pain and bouts of pancreatitis.
After much consideration, Kevin and I decided that I would stay here in Maryland and seek treatment for my complicated conditions at John’s Hopkins Hospital, thanks to my parents who are graciously housing me while I’m here getting help. I want to get “fixed” once and for all, so I can try to have a more normal life. I want to get to the point that instead of seeing my doctors at Hopkins every month or two, I can come here to see them every year or two! I want to get back to my life in Texas. I have felt in limbo for some time.
We had some preliminary visits with the doctors in February and, the first procedure I had done on Feb. 17th was the Endoscopy where they looked down my throat and put Botox in my stomach, which would help my stomach muscles. The doctor didn’t know if it would help or not, but it was something they hadn’t tried. They said I’d see results in 1 to 5 weeks. I haven’t noticed anything yet, but we’re not counting it a loss yet!
Last week I actually had a little setback. I have an infection at my feeding tube site and the doctors admitted me to the hospital so that I could get IV antibiotics. The site is still bothersome and will be sore, but the infection is getting better and I’m still taking medicine. I was in the hospital for 4 days, and you can bet I was glad to get home, although I had great care and God is always so good to me. I want to be a light for Him wherever I go.
Anyway, I had an appointment with a specialist about a week or so ago, and he said that the next step is for me to have a Gastric Pacemaker put into my stomach. What it may do is make my stomach motile again. He told me that I have a 50/50 chance of this procedure working. If that doesn’t work, then they will remove 75% of my stomach and resection it off in the hopes that it may work somewhat again.
Hopefully the first procedure will work. If not, I may be here for an even longer stay because the second surgery is more invasive and complicated.
We don’t know what else the doctors are considering yet. Truthfully, They don’t have hopes that I’ll ever eat normally again, but at this point, I’m okay with having some bites of food!! I am clinging to that hope.
I go to the doctor’s office on Tuesday and I’m actually hoping to get a surgery date nailed down for the first pacemaker surgery also this week. Once I do know more specifics, I will share them with you all!
Thank you for your prayers for me AND for Kevin. He appreciates them from each and every one of you who have lifted his name in prayer to God. Thank you from the bottom of our hearts. God is listening, God is hearing, and surrounds me so many times with love and comfort I know is only from Him and I KNOW that feeling I feel is from the prayers being said by others on my behalf. Thank you so much for those prayers you all pray for me and Kevin!
Please pray for my husband to have a safe trip here and that this week will a productive one where the right decisions for my health will be made.
In a letter soon, I would like to share how God has used this illness in my life to really bring me closer to Him and to others. I will share that soon. I just wanted to update everyone really quickly tonight!
Thank you again for your love and friendship!
Love,
Ami
I thought that I would write a quick blog. I can’t sleep tonight, so I have decided to write a little blog to keep you updated on my progress while I’m here in Maryland. This is very abbreviated. My condition, as most of you know, is very complicated, and to those who want to know more, I am always happy to tell you. This is just the basics of what I’ve learned thus far, and what I am getting ready to face at the doctors during the next week or two!!!
I’m actually getting very excited. I only have 4 more days until Kevin comes to Maryland for a week’s visit with me! I am really thrilled to see my sweetheart after a month of missing him.
As everyone knows, I haven’t been eating at all. I can drink some liquids but that’s pretty much it. I will sip a milk shake now and then, but I pretty much stick to my tube feedings. That’s the only way that I can guarantee control of the nausea, vomiting, pain and bouts of pancreatitis.
After much consideration, Kevin and I decided that I would stay here in Maryland and seek treatment for my complicated conditions at John’s Hopkins Hospital, thanks to my parents who are graciously housing me while I’m here getting help. I want to get “fixed” once and for all, so I can try to have a more normal life. I want to get to the point that instead of seeing my doctors at Hopkins every month or two, I can come here to see them every year or two! I want to get back to my life in Texas. I have felt in limbo for some time.
We had some preliminary visits with the doctors in February and, the first procedure I had done on Feb. 17th was the Endoscopy where they looked down my throat and put Botox in my stomach, which would help my stomach muscles. The doctor didn’t know if it would help or not, but it was something they hadn’t tried. They said I’d see results in 1 to 5 weeks. I haven’t noticed anything yet, but we’re not counting it a loss yet!
Last week I actually had a little setback. I have an infection at my feeding tube site and the doctors admitted me to the hospital so that I could get IV antibiotics. The site is still bothersome and will be sore, but the infection is getting better and I’m still taking medicine. I was in the hospital for 4 days, and you can bet I was glad to get home, although I had great care and God is always so good to me. I want to be a light for Him wherever I go.
Anyway, I had an appointment with a specialist about a week or so ago, and he said that the next step is for me to have a Gastric Pacemaker put into my stomach. What it may do is make my stomach motile again. He told me that I have a 50/50 chance of this procedure working. If that doesn’t work, then they will remove 75% of my stomach and resection it off in the hopes that it may work somewhat again.
Hopefully the first procedure will work. If not, I may be here for an even longer stay because the second surgery is more invasive and complicated.
We don’t know what else the doctors are considering yet. Truthfully, They don’t have hopes that I’ll ever eat normally again, but at this point, I’m okay with having some bites of food!! I am clinging to that hope.
I go to the doctor’s office on Tuesday and I’m actually hoping to get a surgery date nailed down for the first pacemaker surgery also this week. Once I do know more specifics, I will share them with you all!
Thank you for your prayers for me AND for Kevin. He appreciates them from each and every one of you who have lifted his name in prayer to God. Thank you from the bottom of our hearts. God is listening, God is hearing, and surrounds me so many times with love and comfort I know is only from Him and I KNOW that feeling I feel is from the prayers being said by others on my behalf. Thank you so much for those prayers you all pray for me and Kevin!
Please pray for my husband to have a safe trip here and that this week will a productive one where the right decisions for my health will be made.
In a letter soon, I would like to share how God has used this illness in my life to really bring me closer to Him and to others. I will share that soon. I just wanted to update everyone really quickly tonight!
Thank you again for your love and friendship!
Love,
Ami
Tuesday, February 7, 2012
Latest Update 2/7/12
Dearest Friends and Family,
I wanted to update you all, my friends and family, about my doctor’s appointment today and about my health in general. I know that so many of you are praying for me. I wanted to let you know what all is happening so that you can continue to pray as I update you.
My mom and dad took me to the doctor’s today and I sat with the doctor. We went over anything and I basically told her how hard things have been. I can’t eat much of anything at all. Sometimes I will get to sip a milkshake, but that’s on a good day, and most days I just exist on hot tea and some coffee when that doesn’t make me sick. I have lost a total of 60 pounds, which is good, but I am still losing the weight because I can’t eat and I’m just feeding on my J-Tube.
The doctor told me basically that there really isn’t much hope that I will ever eat normally again. She said that my disease is very unique and there aren’t very many people that have to face the kind and type of illness that I am facing. She reiterated that I have two issues, one with the stomach and one with the pancreas. Right now, they are going to focus on the stomach. Even though there is a chance I may never eat normally again, they are going to do a few things to try to help.
The first procedure they’re going to do is their going to go down my throat (do an endoscopy) and stick my stomach with Botox. It’s a muscle relaxer that is usually injected by people for wrinkles, but they’ve found it has other uses, and one of them is to help with those who have issues such as mine. It may or may not work, but it’s worth a try. They will be doing that next week sometime.
The second procedure will possibly be to put a Pacemaker in my stomach. They are not sure if I qualify for the pacemaker or not. They are consulting each other about the possibility of whether it is worth trying or not. What a pacemaker will do is help with my stomach motility. It may or may not work. So we’re waiting to hear whether or not the doctors will approve the pacemaker.
The third procedure is to put another tube called a Peg or G-Tube in my stomach. That will help me with the nausea and will help drain the gasses out of my stomach. It is very likely that I will get this tube before I come home to Texas.
The doctor told me that there is no easy fix for my situation. She said that she doesn’t know very many people that could handle not eating and doing what I’ve done. She said that I’m strong. Of course, I told her that My strength comes from Above and that I have a great support network.
Basically, even with these procedures, It’s not likely that I’ll eat normally. But if they can help the nausea, and if they can control some of the pain, I will try what they want me to. But we always have the pancreas to contend with. It could always flare up, and that’s a problem that we don’t really want to address because a pancreas surgery is so dangerous and could be life-threatening. It would be so much better just to not eat and live that way then to have my pancreas removed.
It’s a difficult thing, being told that even with surgeries and stuff, I will likely never eat normally. At this point, I’m just wanting to be able to have a bite of something every now and then. Hopefully what they do while I’m here in Maryland this time will give me that ability.
I’m very sad because it means that I’m going to be gone from my husband for a while, but we have to get this all done NOW and stop teeter-tottering with all of these trips back and forth. I want my life back, and I want to get things resolved now! But saying that, I miss my husband so much. He is my better half, my completer, and I adore Kevin. He loves me, too, and he knows that this is where I have to be. He is going to come for a visit in March, and hopefully I will have my procedures done before then or during that time. We are getting the ball rolling, but we are being realistic about things and timing.
Please pray for me while I’m here. Truthfully, I’m a bit discouraged, but that’s to be expected. I’m human! What you can pray for is first, that the Lord would Heal me if He sees fit. If not, please pray that the doctors will do the right things for me, that I won’t miss my life in Texas too much, and that my pancreas problem won’t flare up. Please pray for me as you see fit. I just want God’s will to be done in my life. I can do all things through Christ Who Strengthens me!
I love God, and I know that He’s going to be glorified no matter what. Thank you for your prayers. I know that this is complicated, but I know that Jesus is Lord, too. He can do all things. Thanks for reading this and thanks for caring enough to be my friend. I love you all.
Lots of love,
Ami
I wanted to update you all, my friends and family, about my doctor’s appointment today and about my health in general. I know that so many of you are praying for me. I wanted to let you know what all is happening so that you can continue to pray as I update you.
My mom and dad took me to the doctor’s today and I sat with the doctor. We went over anything and I basically told her how hard things have been. I can’t eat much of anything at all. Sometimes I will get to sip a milkshake, but that’s on a good day, and most days I just exist on hot tea and some coffee when that doesn’t make me sick. I have lost a total of 60 pounds, which is good, but I am still losing the weight because I can’t eat and I’m just feeding on my J-Tube.
The doctor told me basically that there really isn’t much hope that I will ever eat normally again. She said that my disease is very unique and there aren’t very many people that have to face the kind and type of illness that I am facing. She reiterated that I have two issues, one with the stomach and one with the pancreas. Right now, they are going to focus on the stomach. Even though there is a chance I may never eat normally again, they are going to do a few things to try to help.
The first procedure they’re going to do is their going to go down my throat (do an endoscopy) and stick my stomach with Botox. It’s a muscle relaxer that is usually injected by people for wrinkles, but they’ve found it has other uses, and one of them is to help with those who have issues such as mine. It may or may not work, but it’s worth a try. They will be doing that next week sometime.
The second procedure will possibly be to put a Pacemaker in my stomach. They are not sure if I qualify for the pacemaker or not. They are consulting each other about the possibility of whether it is worth trying or not. What a pacemaker will do is help with my stomach motility. It may or may not work. So we’re waiting to hear whether or not the doctors will approve the pacemaker.
The third procedure is to put another tube called a Peg or G-Tube in my stomach. That will help me with the nausea and will help drain the gasses out of my stomach. It is very likely that I will get this tube before I come home to Texas.
The doctor told me that there is no easy fix for my situation. She said that she doesn’t know very many people that could handle not eating and doing what I’ve done. She said that I’m strong. Of course, I told her that My strength comes from Above and that I have a great support network.
Basically, even with these procedures, It’s not likely that I’ll eat normally. But if they can help the nausea, and if they can control some of the pain, I will try what they want me to. But we always have the pancreas to contend with. It could always flare up, and that’s a problem that we don’t really want to address because a pancreas surgery is so dangerous and could be life-threatening. It would be so much better just to not eat and live that way then to have my pancreas removed.
It’s a difficult thing, being told that even with surgeries and stuff, I will likely never eat normally. At this point, I’m just wanting to be able to have a bite of something every now and then. Hopefully what they do while I’m here in Maryland this time will give me that ability.
I’m very sad because it means that I’m going to be gone from my husband for a while, but we have to get this all done NOW and stop teeter-tottering with all of these trips back and forth. I want my life back, and I want to get things resolved now! But saying that, I miss my husband so much. He is my better half, my completer, and I adore Kevin. He loves me, too, and he knows that this is where I have to be. He is going to come for a visit in March, and hopefully I will have my procedures done before then or during that time. We are getting the ball rolling, but we are being realistic about things and timing.
Please pray for me while I’m here. Truthfully, I’m a bit discouraged, but that’s to be expected. I’m human! What you can pray for is first, that the Lord would Heal me if He sees fit. If not, please pray that the doctors will do the right things for me, that I won’t miss my life in Texas too much, and that my pancreas problem won’t flare up. Please pray for me as you see fit. I just want God’s will to be done in my life. I can do all things through Christ Who Strengthens me!
I love God, and I know that He’s going to be glorified no matter what. Thank you for your prayers. I know that this is complicated, but I know that Jesus is Lord, too. He can do all things. Thanks for reading this and thanks for caring enough to be my friend. I love you all.
Lots of love,
Ami
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
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!
Love,
Ami McCarty
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!
Love,
Ami McCarty
Thursday, November 3, 2011
Update on my Surgery...It's OVER!!!!!
Dear Friends,
Well I made it through surgery. Thank you for your prayers. I was so nervous, but I could tell that God was with me, holding me in the palm of His hand as always!! I mean it when I say THANKS for praying!!!
I had my pain pump surgery yesterday afternoon, and by all accounts, SO FAR it is a success! We hope it will continue to be okay. Right now, I am in a tremendous amount of pain because of the actual surgery. It's going to be a difficult next couple of days. I am hurting pretty intensely because of the tender spot it is in and because they had to slice open my side. It's so sore.
They inserted an 8 ounce disk that looks like a hockey puck into my right side of my abdomen. It's actually larger and heavier than I expected it to be. It's weird to think it's inside of me. Kevin and I were laughing because I have rods in my back, a tube in my stomach and a pain pump in my side. I'm turning into a robot!!
Anyway, The surgery took longer than they anticipated because they had a little bit of trouble anchoring the device inside my side. It basically had to be sutured in my side somehow so that it would stay there and not move at all. The doctor had a bit of trouble because of my tissue and the fact that I already have a feeding tube on one side. I am wearing an abdominal band, which is like a girdle, and I will have to wear it for a week straight without taking it off, and then I will have to wear it for 6 to 8 more weeks. It is holding the device in place so it doesn't move at all. It's important that it stays in place.
After the device was implanted, they threaded a catheter to my spine and the medication is continuously flowing and will provide me relief, if all is successful. It will take some adjusting to get the dosage correctly. They can set the device with their computer systems.
So basically I have to rest for the next few days. I can't lift anything AT ALL. I have to be still and I can't shower for a few days.
I ask you to PLEASE pray for a few things. First that I will not be in so much pain. I am really in a lot of pain right now from the incision and from the surgery. I hope that will go away soon. The doctors said the pump should give me relief, but they did say that it is normal to be in severe pain for the first few days after surgery, so what I am feeling is normal.
I also ask you to pray that it works and that everything goes well with the device and that there are NO complications. The doctors are concerned about infection, so I'm on medication to prevent me from healing. I really appreciate all of your prayers. I love you all. You mean so much to me. Thanks for being so concerned and reading up on my life. I will let you know how things go.
I am looking forward to a visit from my college roommate this weekend. My best friend from Pennsylvania is flying in and will be helping me recuperate! I can't wait to see her. Pray we have a great visit, too!
Thanks again for your prayers,
Ami :)
Well I made it through surgery. Thank you for your prayers. I was so nervous, but I could tell that God was with me, holding me in the palm of His hand as always!! I mean it when I say THANKS for praying!!!
I had my pain pump surgery yesterday afternoon, and by all accounts, SO FAR it is a success! We hope it will continue to be okay. Right now, I am in a tremendous amount of pain because of the actual surgery. It's going to be a difficult next couple of days. I am hurting pretty intensely because of the tender spot it is in and because they had to slice open my side. It's so sore.
They inserted an 8 ounce disk that looks like a hockey puck into my right side of my abdomen. It's actually larger and heavier than I expected it to be. It's weird to think it's inside of me. Kevin and I were laughing because I have rods in my back, a tube in my stomach and a pain pump in my side. I'm turning into a robot!!
Anyway, The surgery took longer than they anticipated because they had a little bit of trouble anchoring the device inside my side. It basically had to be sutured in my side somehow so that it would stay there and not move at all. The doctor had a bit of trouble because of my tissue and the fact that I already have a feeding tube on one side. I am wearing an abdominal band, which is like a girdle, and I will have to wear it for a week straight without taking it off, and then I will have to wear it for 6 to 8 more weeks. It is holding the device in place so it doesn't move at all. It's important that it stays in place.
After the device was implanted, they threaded a catheter to my spine and the medication is continuously flowing and will provide me relief, if all is successful. It will take some adjusting to get the dosage correctly. They can set the device with their computer systems.
So basically I have to rest for the next few days. I can't lift anything AT ALL. I have to be still and I can't shower for a few days.
I ask you to PLEASE pray for a few things. First that I will not be in so much pain. I am really in a lot of pain right now from the incision and from the surgery. I hope that will go away soon. The doctors said the pump should give me relief, but they did say that it is normal to be in severe pain for the first few days after surgery, so what I am feeling is normal.
I also ask you to pray that it works and that everything goes well with the device and that there are NO complications. The doctors are concerned about infection, so I'm on medication to prevent me from healing. I really appreciate all of your prayers. I love you all. You mean so much to me. Thanks for being so concerned and reading up on my life. I will let you know how things go.
I am looking forward to a visit from my college roommate this weekend. My best friend from Pennsylvania is flying in and will be helping me recuperate! I can't wait to see her. Pray we have a great visit, too!
Thanks again for your prayers,
Ami :)
Wednesday, October 26, 2011
True Joy
Dear Friends,
I couldn't sleep for thinking so much and I thought this would be a perfect time to blog since I haven't done it in a while. This is a different blog. I am going to update you on my condition and then share a little something God has laid on my heart.
I am doing okay and I am blessed. Next week I get my pain pump. I am tremendously nervous about my procedure, but after that one of my best buddies is coming to visit me and to help be my nurse for a few days. I am so glad for her coming to hang out with me and help me in any way needed. I am truly blessed with lots of people who love me.
Anyway, I just wanted to take some time to just share what the Lord has been speaking to me in my life. So many times, I just update you on my condition, which I'll do right now just to get it out of the way. I am going home in December with an open-ended ticket because I don't know what the doctors are going to suggest. I get more test done at John's Hopkins in Baltimore in December. Then I will see the doctors and they will decide what course of treatment to take. They may want to take my pancreas out or not. I am currently not eating anything by mouth except for water and tic tacs and decaf tea. That's basically it. I have lost 30 pounds in 2 months and I am only being fed by my j-tube. Anyway, I am in a lot of pain so hopefully the pain pump will resolve some of those issues. It's still all very scary and if I think about it too much I start to panic!!!
The real reason I wanted to write tonight is just to talk about what God has put on my heart. I want to talk about Joy and what it means to be joyous. I really pray that in my life, I am joyous. I think Joy is so much more important than Happiness. To me, happiness can change, but Joy is permanent. I believe that living joyously is a character trait.
So many times I see people that have lost their Joy. They've lost joy in life, joy in their marriage, joy in their circumstances, joy in living. It makes me so sad because joy is the easiest thing to obtain. We obtain it by walking with Christ. When you are walking with Christ, no one can steal your joy. They can rattle you and maybe mess with your happiness, but they CAN NOT steal your Joy. That's at the core of your heart.
When we as Christians walk around without joy, we are showing the world that we have nothing that they don't have. We are showing the world that there is nothing joyous about serving Christ.
I'm not saying you can't be sad or have a bad day or be in a bad mood, but when we stay there and wallow in the bad, and we don't want any help to get better -- when there is no true happiness and no true enjoyment in life, then you've lost that Joy that God supplies.
It's one of the fruits of the Spirit, in fact, it's listed right after Love in Gal. 5;22. That's how we get Joy in the first place, by becoming so close to the Spirit and taking on the fruits of the Spirit.
Jesus says in John 17:13 that "I come to you...that they may have MY joy fulfilled in themselves."
In Dueteronomy 28:47, the Children of Israel were punished "Because (they) did not serve the Lord (their) God with joy and gladness of heart..."
A popular verse on Joy is in James 1:2 that says "Count it all JOY when you fall into various trials..."
Perhaps my favorite verse on Joy that I looked up was I Peter 1:8 that says "Whom having not seen you Love, Though now you do not see him yet believing, you rejoice with JOY inexpressible and full of glory."
Sometimes I look at Christians, including myself, and I wonder if I am someone that should bear the name "Christian." The name itself is a derivative of Christ, the man who died to save us. Yet, we do things so often to displease Him. I'm not talking about things we mess up on or make sinful mistakes that we are sorry for. It's the deliberate sins I think that make God so angry. We carry the name of His son, yet we are so unlike Him in many ways.
One of those ways is in our walk and in living with Joy. You can be angry and still be joyous. You can be mad and hurt and still be joyous. You can still be treated unfairly and be joyous. Because joy comes from within. It is a fruit of the Spirit. It comes from Knowing Christ so intimately and having true peace.
Happiness comes and goes every day. But can we say our lives are joyous? Do we walk in peace and bring peace when we walk in a room, or does the air deflate when we walk in the room. When your caller ID shows the number of the person who is calling, do you think "I want to talk to that person because he's got a joyful spirit" or do you think "Not the downer again...I'll let the machine get it."
I'm not preaching at all. I just want joy to be so evident in every person that calls themselves Christians. I heard an anonymous quote once that said "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ."
Ouch. That hurt. I want to be like Christ so badly it hurts!
It's just a thought for today!
Love you all. Thanks for reading!
I couldn't sleep for thinking so much and I thought this would be a perfect time to blog since I haven't done it in a while. This is a different blog. I am going to update you on my condition and then share a little something God has laid on my heart.
I am doing okay and I am blessed. Next week I get my pain pump. I am tremendously nervous about my procedure, but after that one of my best buddies is coming to visit me and to help be my nurse for a few days. I am so glad for her coming to hang out with me and help me in any way needed. I am truly blessed with lots of people who love me.
Anyway, I just wanted to take some time to just share what the Lord has been speaking to me in my life. So many times, I just update you on my condition, which I'll do right now just to get it out of the way. I am going home in December with an open-ended ticket because I don't know what the doctors are going to suggest. I get more test done at John's Hopkins in Baltimore in December. Then I will see the doctors and they will decide what course of treatment to take. They may want to take my pancreas out or not. I am currently not eating anything by mouth except for water and tic tacs and decaf tea. That's basically it. I have lost 30 pounds in 2 months and I am only being fed by my j-tube. Anyway, I am in a lot of pain so hopefully the pain pump will resolve some of those issues. It's still all very scary and if I think about it too much I start to panic!!!
The real reason I wanted to write tonight is just to talk about what God has put on my heart. I want to talk about Joy and what it means to be joyous. I really pray that in my life, I am joyous. I think Joy is so much more important than Happiness. To me, happiness can change, but Joy is permanent. I believe that living joyously is a character trait.
So many times I see people that have lost their Joy. They've lost joy in life, joy in their marriage, joy in their circumstances, joy in living. It makes me so sad because joy is the easiest thing to obtain. We obtain it by walking with Christ. When you are walking with Christ, no one can steal your joy. They can rattle you and maybe mess with your happiness, but they CAN NOT steal your Joy. That's at the core of your heart.
When we as Christians walk around without joy, we are showing the world that we have nothing that they don't have. We are showing the world that there is nothing joyous about serving Christ.
I'm not saying you can't be sad or have a bad day or be in a bad mood, but when we stay there and wallow in the bad, and we don't want any help to get better -- when there is no true happiness and no true enjoyment in life, then you've lost that Joy that God supplies.
It's one of the fruits of the Spirit, in fact, it's listed right after Love in Gal. 5;22. That's how we get Joy in the first place, by becoming so close to the Spirit and taking on the fruits of the Spirit.
Jesus says in John 17:13 that "I come to you...that they may have MY joy fulfilled in themselves."
In Dueteronomy 28:47, the Children of Israel were punished "Because (they) did not serve the Lord (their) God with joy and gladness of heart..."
A popular verse on Joy is in James 1:2 that says "Count it all JOY when you fall into various trials..."
Perhaps my favorite verse on Joy that I looked up was I Peter 1:8 that says "Whom having not seen you Love, Though now you do not see him yet believing, you rejoice with JOY inexpressible and full of glory."
Sometimes I look at Christians, including myself, and I wonder if I am someone that should bear the name "Christian." The name itself is a derivative of Christ, the man who died to save us. Yet, we do things so often to displease Him. I'm not talking about things we mess up on or make sinful mistakes that we are sorry for. It's the deliberate sins I think that make God so angry. We carry the name of His son, yet we are so unlike Him in many ways.
One of those ways is in our walk and in living with Joy. You can be angry and still be joyous. You can be mad and hurt and still be joyous. You can still be treated unfairly and be joyous. Because joy comes from within. It is a fruit of the Spirit. It comes from Knowing Christ so intimately and having true peace.
Happiness comes and goes every day. But can we say our lives are joyous? Do we walk in peace and bring peace when we walk in a room, or does the air deflate when we walk in the room. When your caller ID shows the number of the person who is calling, do you think "I want to talk to that person because he's got a joyful spirit" or do you think "Not the downer again...I'll let the machine get it."
I'm not preaching at all. I just want joy to be so evident in every person that calls themselves Christians. I heard an anonymous quote once that said "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ."
Ouch. That hurt. I want to be like Christ so badly it hurts!
It's just a thought for today!
Love you all. Thanks for reading!
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