Sunday, February 28, 2010
Hello my friends, I just wanted to let everyone know how I am doing. This past year has had it's ups and downs. I have learned a lot about myself and what I really want in my life. I think I am just like everyone else we want health and happiness. This past super bowl Sunday I wasn't cheering on my Cardinals in Pittsburgh or most of all getting in trouble for it. :) I was really thinking about is what I went through while being there and it brought tears to my eyes of all that I went through. I am most proud of myself by doing what I really feel is right in my heart. I always say follow your heart and I am happy I do that everyday. My fluid still comes and goes and I am doing my best with that. You never know what tomorrow will bring. I thank everyone for all of your love and support and will keep you updated.... love honeybee
Saturday, September 19, 2009
Saturday, September 12, 2009
Dear Friends and family.
I know it’s been a long time since we updated the Caring Bridge site. As
everyone knows Melissa’s Heart/Liver transplant is on hold for awhile. (good
news for her). Not a lot as changed with her medically. She still has to go in
every few months and have a paracentesis. That’s because of her Protein losing
enteropathy (PLE) Her potassium also stays at a critical level most of the time.
So lots of potassium pills for her. The good news is that they took out
Melissa’s pacemaker 8/10/09. We think it might be a worlds record for being in
the longest. She had it put in 07/14/93. 16 years ago. They originally put it in
because of her PLE. It was originally put in to increase her heart rate, which would help the
heart pump faster and more efficiently. They were hoping it would help her PLE.
As we all know it hasn’t helped much. Since the pacemaker was no longer working
well, and it was so old they decided to remove it. We are all hoping for good
results. We are also praying that Melissa continues to stay the same for awhile.
She’s trying to stay strong and have a good attitude during this time of
uncertainty.
We want to thank everyone for continued support, and all the prayers. I know
everyone has there arms wrapped around her with all those hugs. We will continue
to keep you updated.
Blessings to all,
Judy
I know it’s been a long time since we updated the Caring Bridge site. As
everyone knows Melissa’s Heart/Liver transplant is on hold for awhile. (good
news for her). Not a lot as changed with her medically. She still has to go in
every few months and have a paracentesis. That’s because of her Protein losing
enteropathy (PLE) Her potassium also stays at a critical level most of the time.
So lots of potassium pills for her. The good news is that they took out
Melissa’s pacemaker 8/10/09. We think it might be a worlds record for being in
the longest. She had it put in 07/14/93. 16 years ago. They originally put it in
because of her PLE. It was originally put in to increase her heart rate, which would help the
heart pump faster and more efficiently. They were hoping it would help her PLE.
As we all know it hasn’t helped much. Since the pacemaker was no longer working
well, and it was so old they decided to remove it. We are all hoping for good
results. We are also praying that Melissa continues to stay the same for awhile.
She’s trying to stay strong and have a good attitude during this time of
uncertainty.
We want to thank everyone for continued support, and all the prayers. I know
everyone has there arms wrapped around her with all those hugs. We will continue
to keep you updated.
Blessings to all,
Judy
Thursday, May 21, 2009
Day Two Pittsburgh- May 20, 2009
Today they met with the Liver doctors and the conversation was more of the same. The Liver team is second in line here and they have to follow what the heart team dictates. Since the heart is what is driving the transplant They too want to be responsible and watch her blood work and Quality of life. When things start changing they will list her. On another note, a new medicine is going for FDA approval soon that will help the liver. If it gets approved and they can buy time, she may not need a liver transplant when the time comes. Upon speaking with Melissa after her appointments today, I do believe she is pretty clear that she wants to wait also. I heard some relief. Thank you all for joining the cause, please stay tuned for more. Terri
Tuesday, May 19, 2009
Pittsburgh May 19, 2009
Well, I was able to listen in on the phone call with the Dr’s in Pittsburgh. Two of them spoke and I am going to write a synopsis of what they said.
Basically, they really talked to Melissa about her quality of life. What she does, how much she can do, what are her limitations, how often she has been in the hospital, her keen sense of knowing when there is something not exactly right with her blood work, and how she is managing her fluid retention and new medicines to handle the fluid. They spoke of the risks involved. Then they talked about the importance of balancing the risks. They spoke about how much better she is today than one year ago with the change in medication. (They changed a lot of medication when they first started talking transplant, trying to help Melissa manage the fluid retention). The one Dr. asked her what her gut feeling was and she replied, “not to do it now”. He stated that her gut feeling was right! Her survival rate is about 80% for the first year. Her 5 year survival rate is 75%. Her ten year survival rate is 50%. If they can keep her quality of life as is, then we can buy time. Maybe, it will only be a few months, maybe it could be a few years. Never the less we buy time! They were sure that with Melissa’s knowing of her body and her gut feeling that she will know when the time is right. There is another appointment tomorrow, but my feeling is that it will be more of the same. They still need to take all of this to the committee and get back with us. They are telling Melissa that the risks are high and that she hold the decision on when is the right time. All she needs to do is make a call, jump on a plane and once in Pittsburgh they will list her. I do believe this will be a long process. Melissa is a bit overwhelmed to say the least. It is a life or death decision and responsibility. I know this girl, and I know she can do it. She knows her body better than anyone I have ever met.
Keep praying……..keep writing………keep loving……..Terri
Basically, they really talked to Melissa about her quality of life. What she does, how much she can do, what are her limitations, how often she has been in the hospital, her keen sense of knowing when there is something not exactly right with her blood work, and how she is managing her fluid retention and new medicines to handle the fluid. They spoke of the risks involved. Then they talked about the importance of balancing the risks. They spoke about how much better she is today than one year ago with the change in medication. (They changed a lot of medication when they first started talking transplant, trying to help Melissa manage the fluid retention). The one Dr. asked her what her gut feeling was and she replied, “not to do it now”. He stated that her gut feeling was right! Her survival rate is about 80% for the first year. Her 5 year survival rate is 75%. Her ten year survival rate is 50%. If they can keep her quality of life as is, then we can buy time. Maybe, it will only be a few months, maybe it could be a few years. Never the less we buy time! They were sure that with Melissa’s knowing of her body and her gut feeling that she will know when the time is right. There is another appointment tomorrow, but my feeling is that it will be more of the same. They still need to take all of this to the committee and get back with us. They are telling Melissa that the risks are high and that she hold the decision on when is the right time. All she needs to do is make a call, jump on a plane and once in Pittsburgh they will list her. I do believe this will be a long process. Melissa is a bit overwhelmed to say the least. It is a life or death decision and responsibility. I know this girl, and I know she can do it. She knows her body better than anyone I have ever met.
Keep praying……..keep writing………keep loving……..Terri
Thursday, April 23, 2009
We got A call:
Friends and Family,
After 2½ long months we've finally heard from Pittsburgh. It has been very hard
waiting for them to make a decision, especially when we thought it would be only a
few weeks. Both Heart and Liver transplant teams met on Monday. The Liver
transplant team decided it was a go on their end if the Heart transplant team is
ready. They want us to travel back to Pittsburgh again so we can make a group
decision and have us meet with all the Heart transplant Dr’s. They are saying
she is a very high risk for the surgery because she is a congenital heart
patient and has had 4 open heart surgeries. They are still not sure if she
should have the surgery now while she is still some what healthy, or wait a year
or so until she gets a little sicker. The risk is very high so they are trying
to get the timing right.
So the plan is:
1. For us to go to Pittsburgh in a few weeks, for conversation and possibly a few more test.
2. Go over and be clear on the risks with all of the Heart Specialists,
3. Help Melissa make a decision and go over it with her family.
I think one of the hardest parts of this is it’s not a simple straight up
decision. It’s a life and death20decision that they want you to make. How can
anyone know that answer. We all say to leave it in Gods hands which I truly have
always believed. My question for everyone is what does that mean to you? Leave
it in Gods hands.
As a mother all you ever want is for your child to be happy and healthy. I want
that for Melissa with all my heart. This is a decision that she shouldn’t have to
make, but will have to. How many of us would be able to make that decision.
Should we have the surgery now with the high risk? Should we wait a year or so?
Will the risk be the same or higher? What would we do if we had a 80/20 chance?
Would our answer be the same for us, or would we have a different answer if it
were one of our children?
Melissa, I know that what ever decision you make it will be the right one. We
will all stand behind you with our love and prayers. We will all have our arms
wrapped around you with lots of hugs. We love you my Dear Melissa.
Judy
After 2½ long months we've finally heard from Pittsburgh. It has been very hard
waiting for them to make a decision, especially when we thought it would be only a
few weeks. Both Heart and Liver transplant teams met on Monday. The Liver
transplant team decided it was a go on their end if the Heart transplant team is
ready. They want us to travel back to Pittsburgh again so we can make a group
decision and have us meet with all the Heart transplant Dr’s. They are saying
she is a very high risk for the surgery because she is a congenital heart
patient and has had 4 open heart surgeries. They are still not sure if she
should have the surgery now while she is still some what healthy, or wait a year
or so until she gets a little sicker. The risk is very high so they are trying
to get the timing right.
So the plan is:
1. For us to go to Pittsburgh in a few weeks, for conversation and possibly a few more test.
2. Go over and be clear on the risks with all of the Heart Specialists,
3. Help Melissa make a decision and go over it with her family.
I think one of the hardest parts of this is it’s not a simple straight up
decision. It’s a life and death20decision that they want you to make. How can
anyone know that answer. We all say to leave it in Gods hands which I truly have
always believed. My question for everyone is what does that mean to you? Leave
it in Gods hands.
As a mother all you ever want is for your child to be happy and healthy. I want
that for Melissa with all my heart. This is a decision that she shouldn’t have to
make, but will have to. How many of us would be able to make that decision.
Should we have the surgery now with the high risk? Should we wait a year or so?
Will the risk be the same or higher? What would we do if we had a 80/20 chance?
Would our answer be the same for us, or would we have a different answer if it
were one of our children?
Melissa, I know that what ever decision you make it will be the right one. We
will all stand behind you with our love and prayers. We will all have our arms
wrapped around you with lots of hugs. We love you my Dear Melissa.
Judy
We got A call:
Friends and Family,
After 2½ long months we've finally heard from Pittsburgh. It has been very hard
waiting for them to make a decision, especially when we thought it would be only a
few weeks. Both Heart and Liver transplant teams met on Monday. The Liver
transplant team decided it was a go on their end if the Heart transplant team is
ready. They want us to travel back to Pittsburgh again so we can make a group
decision and have us meet with all the Heart transplant Dr’s. They are saying
she is a very high risk for the surgery because she is a congenital heart
patient and has had 4 open heart surgeries. They are still not sure if she
should have the surgery now while she is still some what healthy, or wait a year
or so until she gets a little sicker. The risk is very high so they are trying
to get the timing right.
So the plan is:
1. For us to go to Pittsburgh in a few weeks, for conversation and possibly a few more test.
2. Go over and be clear on the risks with all of the Heart Specialists,
3. Help Melissa make a decision and go over it with her family.
I think one of the hardest parts of this is it’s not a simple straight up
decision. It’s a life and death20decision that they want you to make. How can
anyone know that answer. We all say to leave it in Gods hands which I truly have
always believed. My question for everyone is what does that mean to you? Leave
it in Gods hands.
As a mother all you ever want is for your child to be happy and healthy. I want
that for Melissa with all my heart. This is a decision that she shouldn’t have to
make, but will have to. How many of us would be able to make that decision.
Should we have the surgery now with the high risk? Should we wait a year or so?
Will the risk be the same or higher? What would we do if we had a 80/20 chance?
Would our answer be the same for us, or would we have a different answer if it
were one of our children?
Melissa, I know that what ever decision you make it will be the right one. We
will all stand behind you with our love and prayers. We will all have our arms
wrapped around you with lots of hugs. We love you my Dear Melissa.
Judy
After 2½ long months we've finally heard from Pittsburgh. It has been very hard
waiting for them to make a decision, especially when we thought it would be only a
few weeks. Both Heart and Liver transplant teams met on Monday. The Liver
transplant team decided it was a go on their end if the Heart transplant team is
ready. They want us to travel back to Pittsburgh again so we can make a group
decision and have us meet with all the Heart transplant Dr’s. They are saying
she is a very high risk for the surgery because she is a congenital heart
patient and has had 4 open heart surgeries. They are still not sure if she
should have the surgery now while she is still some what healthy, or wait a year
or so until she gets a little sicker. The risk is very high so they are trying
to get the timing right.
So the plan is:
1. For us to go to Pittsburgh in a few weeks, for conversation and possibly a few more test.
2. Go over and be clear on the risks with all of the Heart Specialists,
3. Help Melissa make a decision and go over it with her family.
I think one of the hardest parts of this is it’s not a simple straight up
decision. It’s a life and death20decision that they want you to make. How can
anyone know that answer. We all say to leave it in Gods hands which I truly have
always believed. My question for everyone is what does that mean to you? Leave
it in Gods hands.
As a mother all you ever want is for your child to be happy and healthy. I want
that for Melissa with all my heart. This is a decision that she shouldn’t have to
make, but will have to. How many of us would be able to make that decision.
Should we have the surgery now with the high risk? Should we wait a year or so?
Will the risk be the same or higher? What would we do if we had a 80/20 chance?
Would our answer be the same for us, or would we have a different answer if it
were one of our children?
Melissa, I know that what ever decision you make it will be the right one. We
will all stand behind you with our love and prayers. We will all have our arms
wrapped around you with lots of hugs. We love you my Dear Melissa.
Judy
We got A call:
Friends and Family,
After 2½ long months we've finally heard from Pittsburgh. It has been very hard
waiting for them to make a decision, especially when we thought it would be only a
few weeks. Both Heart and Liver transplant teams met on Monday. The Liver
transplant team decided it was a go on their end if the Heart transplant team is
ready. They want us to travel back to Pittsburgh again so we can make a group
decision and have us meet with all the Heart transplant Dr’s. They are saying
she is a very high risk for the surgery because she is a congenital heart
patient and has had 4 open heart surgeries. They are still not sure if she
should have the surgery now while she is still some what healthy, or wait a year
or so until she gets a little sicker. The risk is very high so they are trying
to get the timing right.
So the plan is:
1. For us to go to Pittsburgh in a few weeks, for conversation and possibly a few more test.
2. Go over and be clear on the risks with all of the Heart Specialists,
3. Help Melissa make a decision and go over it with her family.
I think one of the hardest parts of this is it’s not a simple straight up
decision. It’s a life and death20decision that they want you to make. How can
anyone know that answer. We all say to leave it in Gods hands which I truly have
always believed. My question for everyone is what does that mean to you? Leave
it in Gods hands.
As a mother all you ever want is for your child to be happy and healthy. I want
that for Melissa with all my heart. This is a decision that she shouldn’t have to
make, but will have to. How many of us would be able to make that decision.
Should we have the surgery now with the high risk? Should we wait a year or so?
Will the risk be the same or higher? What would we do if we had a 80/20 chance?
Would our answer be the same for us, or would we have a different answer if it
were one of our children?
Melissa, I know that what ever decision you make it will be the right one. We
will all stand behind you with our love and prayers. We will all have our arms
wrapped around you with lots of hugs. We love you my Dear Melissa.
Judy
After 2½ long months we've finally heard from Pittsburgh. It has been very hard
waiting for them to make a decision, especially when we thought it would be only a
few weeks. Both Heart and Liver transplant teams met on Monday. The Liver
transplant team decided it was a go on their end if the Heart transplant team is
ready. They want us to travel back to Pittsburgh again so we can make a group
decision and have us meet with all the Heart transplant Dr’s. They are saying
she is a very high risk for the surgery because she is a congenital heart
patient and has had 4 open heart surgeries. They are still not sure if she
should have the surgery now while she is still some what healthy, or wait a year
or so until she gets a little sicker. The risk is very high so they are trying
to get the timing right.
So the plan is:
1. For us to go to Pittsburgh in a few weeks, for conversation and possibly a few more test.
2. Go over and be clear on the risks with all of the Heart Specialists,
3. Help Melissa make a decision and go over it with her family.
I think one of the hardest parts of this is it’s not a simple straight up
decision. It’s a life and death20decision that they want you to make. How can
anyone know that answer. We all say to leave it in Gods hands which I truly have
always believed. My question for everyone is what does that mean to you? Leave
it in Gods hands.
As a mother all you ever want is for your child to be happy and healthy. I want
that for Melissa with all my heart. This is a decision that she shouldn’t have to
make, but will have to. How many of us would be able to make that decision.
Should we have the surgery now with the high risk? Should we wait a year or so?
Will the risk be the same or higher? What would we do if we had a 80/20 chance?
Would our answer be the same for us, or would we have a different answer if it
were one of our children?
Melissa, I know that what ever decision you make it will be the right one. We
will all stand behind you with our love and prayers. We will all have our arms
wrapped around you with lots of hugs. We love you my Dear Melissa.
Judy
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