Rick had his surgery today. After finally getting to speak with the doctor, things went well. They took the leg 6cm below the knee. The leg was more swollen than ideal, but it went well.
Rick is in a lot of pain right now. It's no wonder because of the muscle and tissue they had to go through.
Right now I'm tired. It's been a long day. A very emotional day. It's hard not being there. I've realized people are questioning me not being there. The only way to answer that is financials. It's killing me not being there. If Rick was receiving his disability, I would be there. But right now, I can't afford even 2 days off in a row, let a lone a few days to go to Missouri. It's hard. But I have to do what I need to do. We both understand that.
Prayers would be appreciated right now.
Wednesday, September 26, 2012
Monday, September 24, 2012
Other than me being sick, spirits have been pretty high. Rick will be having the final surgery tomorrow. He's holdin up really well. Even though surgery is tomorrow, he has his first PT today. He was very excited to tell me about it.
I had the opportunity to go with my mom and sister yesterday to see the Gaither Vocal Band. I have been a fan for a long time now. One of the members, Mark Lowry, is a comedian, and has a way of just lifting you up when you feel down. And it sure gave me even more courage. Bill Gaither wrote a song called Because He Lives. Here is the chorus:
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because i know he holds the future
And life is worth the living
Just because he lives.
And it really is that simple. Because He lives, we can trust that He is with us at all times.
Many of my friends have said that my faith is inspiring, that I am strong. Well, guess what, I don't feel strong. My faith is being tested, I'm hurting, we are hurting. What couple just shy of their 2nd wedding anniversary, accepts truly what is happening. It is the scariest thing I've ever had to deal with. I'm sure it won't be the scariest when we are even older, but right now, I'm scared. Sometimes I feel numb. I doubt. I cry. I scream. I question many things.
But without knowing that He lives, and that He is ALWAYS here, I would be a complete mess. I wouldn't be getting out of bed, I wouldn't want to care. But I do. I know he is with me always.
The Gaither's are also in the process of recording a new song. The chorus was this:
You reap exactly what you sow,
sow mercy,
sow grace,
sow kindess,
sow faith,
words are like water sprinkled with love
You will harves all your hearts been dreaming of.
I will leave you with those words. If I can't trust and put my faith first through all of this, I can't show that to my husband or to anyone else.
I had the opportunity to go with my mom and sister yesterday to see the Gaither Vocal Band. I have been a fan for a long time now. One of the members, Mark Lowry, is a comedian, and has a way of just lifting you up when you feel down. And it sure gave me even more courage. Bill Gaither wrote a song called Because He Lives. Here is the chorus:
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because i know he holds the future
And life is worth the living
Just because he lives.
And it really is that simple. Because He lives, we can trust that He is with us at all times.
Many of my friends have said that my faith is inspiring, that I am strong. Well, guess what, I don't feel strong. My faith is being tested, I'm hurting, we are hurting. What couple just shy of their 2nd wedding anniversary, accepts truly what is happening. It is the scariest thing I've ever had to deal with. I'm sure it won't be the scariest when we are even older, but right now, I'm scared. Sometimes I feel numb. I doubt. I cry. I scream. I question many things.
But without knowing that He lives, and that He is ALWAYS here, I would be a complete mess. I wouldn't be getting out of bed, I wouldn't want to care. But I do. I know he is with me always.
The Gaither's are also in the process of recording a new song. The chorus was this:
You reap exactly what you sow,
sow mercy,
sow grace,
sow kindess,
sow faith,
words are like water sprinkled with love
You will harves all your hearts been dreaming of.
I will leave you with those words. If I can't trust and put my faith first through all of this, I can't show that to my husband or to anyone else.
Wednesday, September 19, 2012
Day after surgery 1
Rick did well during surgery. They removed the foot starting at the ankle. He is in pain, but so far his spirits are high. Friday should be the day for surgery number 2. This is where it can get really difficult. I am afraid for him. I can't imagine the pain he will be enduring after wards. Not just from losing the limb, but from the rehab to follow.The next couple of months are going to be quite rough. Pray that his spirits stay high, that healing comes quickly, pain is little, and rehab is fast.
Yesterday, I woke up and started sneezing. I sneezed all day. I thought it was allergies. Last night it went into my chest and has seemed to settle there. It's hard. Here I am trying to be strong and do everything I can, and I get sick. I hate being sick. I hate the congestion, the confusion, the pain. But it's a cold, it's temporary. It will go away. Rick losing his leg is permanent.
If you are going through something similar, remember to stay strong. A limb can be replaced. Your entire body cannot. Don't try to save something that will kill you like this. Save the rest of you. Be strong and courageous.
Be a friend, be a lover, be a companion. Love like tomorrow is the last. For any time, we can go. God has his timing for us.
In Sunday School at my church, we are going through a book called One Month to Live. So far, it's been really good for me. With everything I am going through, I need to remember our lives are numbered. We have to remember to live every day like it could be our last. Restore broken relationships, study the Bible more, love your family better, do things you never thought you could do. Discover your courage, discover who you are. Live, Love and Learn.
Yesterday, I woke up and started sneezing. I sneezed all day. I thought it was allergies. Last night it went into my chest and has seemed to settle there. It's hard. Here I am trying to be strong and do everything I can, and I get sick. I hate being sick. I hate the congestion, the confusion, the pain. But it's a cold, it's temporary. It will go away. Rick losing his leg is permanent.
If you are going through something similar, remember to stay strong. A limb can be replaced. Your entire body cannot. Don't try to save something that will kill you like this. Save the rest of you. Be strong and courageous.
Be a friend, be a lover, be a companion. Love like tomorrow is the last. For any time, we can go. God has his timing for us.
In Sunday School at my church, we are going through a book called One Month to Live. So far, it's been really good for me. With everything I am going through, I need to remember our lives are numbered. We have to remember to live every day like it could be our last. Restore broken relationships, study the Bible more, love your family better, do things you never thought you could do. Discover your courage, discover who you are. Live, Love and Learn.
Monday, September 17, 2012
Official (unoficially)
So last nights post should be tonights post. It's happening tomorrow. I finally was able to speak with the surgeon myself this evening.
Tomorrow will be surgery #1. They will be starting at the ankle. For those of you who know him, you may have realized his leg is really swollen. So this first surgery will not be fully closed up. They will leave it open to allow the leg to drain. This is going to hopefully assist in bringing the swelling down. Then Friday or Monday they will be removing the leg from right below the knee.
Wow. This is actually happening. We knew it was probably going to happen. Even sure it would happen. But I can't believe it's here. We are both very nervous. I am sure he is more nervous than I am. I can't even imagine what he is feeling right now.
Today was a rough day. There is always the change dialysis will be a permanent thing. That he will be on it from here on out. But we are praying it's temporary.
Please think of us tomorrow. I will update once I find out how things go tomorrow.
Tomorrow will be surgery #1. They will be starting at the ankle. For those of you who know him, you may have realized his leg is really swollen. So this first surgery will not be fully closed up. They will leave it open to allow the leg to drain. This is going to hopefully assist in bringing the swelling down. Then Friday or Monday they will be removing the leg from right below the knee.
Wow. This is actually happening. We knew it was probably going to happen. Even sure it would happen. But I can't believe it's here. We are both very nervous. I am sure he is more nervous than I am. I can't even imagine what he is feeling right now.
Today was a rough day. There is always the change dialysis will be a permanent thing. That he will be on it from here on out. But we are praying it's temporary.
Please think of us tomorrow. I will update once I find out how things go tomorrow.
Sunday, September 16, 2012
Surgery
Tomorrow. Tomorrow is the day the doctor's plan on amputating Rick's leg. Tomorrow, our lives are changin forever. They are planning on taking it from right below the knee. This has been very hard.
Rick asked me today why this is happening to him. We have prayed for healing. We have many people praying. So why is this happening?
Healing comes in many forms. It may not be the way we expect it, but it can be there. The infection in Rick's leg is causing the kidney's to fail. So by taking the leg, it should make the kidney's do some better. We don't expect them to be healed completely, because we had problems before the sore on the foot. We can only pray that his leg heals better than his foot did. So, even though this isn't the healing we expected, it's still healing.
We must remember that no matter what happens, we have an amazing God. Even if you do not believe, and are sitting there asking me how I can believe, all I can say is how can I not? God has touched my life so much in the last couple of weeks. He's real and he's here. He's given us a peace, that we will get through this. We might not understand it, we aren't meant to understand everything.
The More I Seek You
Rick asked me today why this is happening to him. We have prayed for healing. We have many people praying. So why is this happening?
Healing comes in many forms. It may not be the way we expect it, but it can be there. The infection in Rick's leg is causing the kidney's to fail. So by taking the leg, it should make the kidney's do some better. We don't expect them to be healed completely, because we had problems before the sore on the foot. We can only pray that his leg heals better than his foot did. So, even though this isn't the healing we expected, it's still healing.
We must remember that no matter what happens, we have an amazing God. Even if you do not believe, and are sitting there asking me how I can believe, all I can say is how can I not? God has touched my life so much in the last couple of weeks. He's real and he's here. He's given us a peace, that we will get through this. We might not understand it, we aren't meant to understand everything.
The More I Seek You
Thursday, September 13, 2012
Okay...
These last few days have been trying. Rick was told he has something called Charcot Foot. http://www.aafp.org/afp/1998/0601/p2705.html Click here if you would like to know more. In basic terms, it's a horrible infection. Because of this infection, and trying to treat it, his kidney's were getting worse.
They will be amputating his right leg from below the knee. At first, the plan was to do dialysis enough to get him stable enough to fly home. Then they would have the surgery done here. The reason they were going to do this, is because they thought they weren't going to accept his insurance.
Yesterday, they found out for sure that they do take his insurance. It would be better for him to have the surgery there. I will not be there. I work full time, so if Rick was here, I feel like I couldn't give him all the care he is going to need. His mom would come and live with us, but it's only like having 1 1/2 people helping. In Missouri, he has his mom, step mom and sister. The hospital seems to have a great rehab program.
Right now, we are just waiting to find out when the surgery will be. He had a small delay with dialysis because the port in his chest came loose.
To me, this is the second hardest thing I've been through. The first being the death of my sister in 1993. A friend wrote that I was one of the strongest women of God she's ever met. I do not feel strong right now. I feel broken. But I know God is controls. He never gives us more than we can handle.
When we first learned of Rick's prognosis, we were told 5-10 years, and hoping for the best. Now, with the foot the way it is, it has gotten so much worse. The 5-10 years, has been less than 1 year.
We are hoping for the best with the dialysis and everything that is to come. I just pray that he is safe through it all.
These last few days have been trying. Rick was told he has something called Charcot Foot. http://www.aafp.org/afp/1998/0601/p2705.html Click here if you would like to know more. In basic terms, it's a horrible infection. Because of this infection, and trying to treat it, his kidney's were getting worse.
They will be amputating his right leg from below the knee. At first, the plan was to do dialysis enough to get him stable enough to fly home. Then they would have the surgery done here. The reason they were going to do this, is because they thought they weren't going to accept his insurance.
Yesterday, they found out for sure that they do take his insurance. It would be better for him to have the surgery there. I will not be there. I work full time, so if Rick was here, I feel like I couldn't give him all the care he is going to need. His mom would come and live with us, but it's only like having 1 1/2 people helping. In Missouri, he has his mom, step mom and sister. The hospital seems to have a great rehab program.
Right now, we are just waiting to find out when the surgery will be. He had a small delay with dialysis because the port in his chest came loose.
To me, this is the second hardest thing I've been through. The first being the death of my sister in 1993. A friend wrote that I was one of the strongest women of God she's ever met. I do not feel strong right now. I feel broken. But I know God is controls. He never gives us more than we can handle.
When we first learned of Rick's prognosis, we were told 5-10 years, and hoping for the best. Now, with the foot the way it is, it has gotten so much worse. The 5-10 years, has been less than 1 year.
We are hoping for the best with the dialysis and everything that is to come. I just pray that he is safe through it all.
Monday, September 10, 2012
What a week this has been!
Today is September 10. In under a month, we will be married 2 years. It's been hard on us, there have been times where we didn't think we would make it this far. But here we are, no matter the path that got us here.
I am home in Pennsylvania. Rick traveled to Kansas City on Wednesday to prepare for his father's funeral. His father passed away Tuesday of last week. He was 65. He had suffered from diabetes, kidney failure, heart failure and had lost his leg a couple of months ago due to infection.
Thursday, Rick began to shiver and got cold. He had another spell Thursday night and again on Friday morning. When another one started, they called 911. Rick was rushed to Truman Lakewood in Missouri. He had a fever of 103.6. They also found a puss pocket in the wound on the bottom of his foot (this wound has been there since March). They treated the fever, drained the pocket, and admitted him to a room.
3 weeks before, on August 15, we had had blood work done with our Nephrologist. While things were great, we were seeing some improvement. We were told that we should prepaid ourselves for a kidney transplant and dialysis in about 5 years. Okay, 5 years, I can handle that. My husband will be 45 when he will need to go through this. But we will get through it. One number we have been watching is the creatine. With this blood work, it was 3.6, ideally should be .2. So yes, elevated, but not horrible.
Friday, at the ER, the blood work came back, and his creatine was 7. I was in shock. How did we double in 3 weeks?!?!? They talked about emergency dialysis. Wait, what? Dialysis? I thought I had 5 years before I had to go through this and he had to go through this. Saturday morning, more blood work was done, his creatine had gone up to 8. It was getting worse.
He was transferred from Truman Lakewood to Truman Medical Center where they had a Nephrologist and where they were able to do the dialysis. I wasn't too happy at this point as our doctor had not been notified yet. So I called the Nephrologist on call that works with our doctor. With his direct information, the doctor with Rick called him. The on call doctor called me back and said yes, it was needed to save his life. Save his life? Things can't possibly be that bad. Later, the doctor at TMC said that we could give it a few hours and wait until tomorrow's bood work to see where his numbers were to make the best decision. Hoping they would improve, they said that a 6 or below would be good enough for him to be discharged, come home, and get right up to our doctor.
Sunday morning, sure enough, the creatine was at 6!!!! Wonderful news. He was set to be discharged Monday at noon.
I went back to work today with excitement (I had been off since my father-in-law passed away). Feeling so sure, I told my friends that Rick was getting better. Then at 11am I went to break and turned my phone on. I had a message from my mom that said Rick's creatine was 9.5. I held on to the counter as I started to cry.
They said that with it like this, Rick would not even make the flight home. How scary to hear that! They understood how important it was to my husband to be at his father's funeral this evening, that they actually made an exception and allowed him to leave the hospital for a few hours to spend the time with his family and honor his father. But he was to be right back to start dialysis. It was imperative he come right back.
Tonight or tomorrow starts our first dialysis treatment, and I can't be there. We are both very scared but we believe that our God will get us through this.
I am home in Pennsylvania. Rick traveled to Kansas City on Wednesday to prepare for his father's funeral. His father passed away Tuesday of last week. He was 65. He had suffered from diabetes, kidney failure, heart failure and had lost his leg a couple of months ago due to infection.
Thursday, Rick began to shiver and got cold. He had another spell Thursday night and again on Friday morning. When another one started, they called 911. Rick was rushed to Truman Lakewood in Missouri. He had a fever of 103.6. They also found a puss pocket in the wound on the bottom of his foot (this wound has been there since March). They treated the fever, drained the pocket, and admitted him to a room.
3 weeks before, on August 15, we had had blood work done with our Nephrologist. While things were great, we were seeing some improvement. We were told that we should prepaid ourselves for a kidney transplant and dialysis in about 5 years. Okay, 5 years, I can handle that. My husband will be 45 when he will need to go through this. But we will get through it. One number we have been watching is the creatine. With this blood work, it was 3.6, ideally should be .2. So yes, elevated, but not horrible.
Friday, at the ER, the blood work came back, and his creatine was 7. I was in shock. How did we double in 3 weeks?!?!? They talked about emergency dialysis. Wait, what? Dialysis? I thought I had 5 years before I had to go through this and he had to go through this. Saturday morning, more blood work was done, his creatine had gone up to 8. It was getting worse.
He was transferred from Truman Lakewood to Truman Medical Center where they had a Nephrologist and where they were able to do the dialysis. I wasn't too happy at this point as our doctor had not been notified yet. So I called the Nephrologist on call that works with our doctor. With his direct information, the doctor with Rick called him. The on call doctor called me back and said yes, it was needed to save his life. Save his life? Things can't possibly be that bad. Later, the doctor at TMC said that we could give it a few hours and wait until tomorrow's bood work to see where his numbers were to make the best decision. Hoping they would improve, they said that a 6 or below would be good enough for him to be discharged, come home, and get right up to our doctor.
Sunday morning, sure enough, the creatine was at 6!!!! Wonderful news. He was set to be discharged Monday at noon.
I went back to work today with excitement (I had been off since my father-in-law passed away). Feeling so sure, I told my friends that Rick was getting better. Then at 11am I went to break and turned my phone on. I had a message from my mom that said Rick's creatine was 9.5. I held on to the counter as I started to cry.
They said that with it like this, Rick would not even make the flight home. How scary to hear that! They understood how important it was to my husband to be at his father's funeral this evening, that they actually made an exception and allowed him to leave the hospital for a few hours to spend the time with his family and honor his father. But he was to be right back to start dialysis. It was imperative he come right back.
Tonight or tomorrow starts our first dialysis treatment, and I can't be there. We are both very scared but we believe that our God will get us through this.
Starting out-better late than never
I am starting this blog, hoping that I can bring awareness to Nephrotic Syndrome and Kidney Disease as well as many other things. I am hoping to build a community of other's dealing with similar issues for support as well as education.
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