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
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
Tuesday, March 17, 2009
Happy St. Paddy's Day
Hello Everyone:
I hope everyone is having a wonderful weekend I know I am. Well, I called the doctor in Pittsburgh on Friday and was told he was on vacation. Aren't they always on a vacation when we are waiting to hear news? So I will call on Tuesday just wanted to update everyone..... Be safe on ST. Patty's Day : )
Love,
Honeybee
Wednesday, March 4, 2009
Gilbert Fire Department Poker Night
A big THANK YOU goes out to Mike Palmatier from the Gilbert Fire Department who threw a poker party in his garage to raise money for Melissa. Melissa could not wait for this party. She came in 5th and received some really good training from some die hard poker guys.
I can not say thank you enough for not only the money raised ($705.00), but also for the compassion and fun that you guys showed Melissa. GFD (once again) never lets you down. I love you Guys!!!
If there is anyone else out there that wants to have a fund raising party please let us know, the money raised at this fun event is enough to fund a one month housing stay in Pittsburgh.
Friday, February 20, 2009
Hello Everyone- A note from Melissa
“Are they going to call??” “Have they made a decision?” “Are they still thinking about it?” “What's going on, maybe just maybe they forgot me.” HUH yeah right them forget about MELISSA? “Please, like that's really going to happen.” This is going on my second week back home and I’m so excited that I live in Arizona and NOT Pittsburgh. There is nothing wrong with it there, I’m just a HOT KINDA GIRL.... Well, I mean I like it hot not cold! There are times I wanna write on here and let everyone know how I am doing. It's hard to write when I don’t even know how I am feeling. I have days when I feel pretty good and days I just wanna cry and don’t wanna talk about it. Then I turn right around and can’t stop thinking about it. While I was there I learned a very big lesson in life. That is to listen to your gut feelings and you don’t have to do anything you don’t want to do. Before, I went I thought to myself “I am strong, I am a tough girl, I can handle this.” I will go get my testing done, come home and wait for the call. Then when they call and tell me when I need to go I will move down there and wait. I will just keep waiting to get a new heart and liver. Then come right back home and feel great. One of the cardiologist said, to me, “Melissa your not going in to buy a new car, this is a life decision that could cost you your life.” To me, I don’t feel like I am ready for this. Would you be ready to kiss your family one last time and go under this type of surgery? Cause that's what I would be doing if I said alright I wanna go ahead and do this. Nobody knows the out come of what this will be. We can all pray, and hope, and have a good feeling inside us. But, we really don’t know if I would make it. Is the risk really that worth it? I asked the doctor, if they call me and say that I need to have this surgery it’s time, but I say I am not ready yet, will I have another chance? He said, “Yes, that YOU need to be ready for this because YOU are the one going in for surgery, not anyone else but YOU, Melissa, has to make this choice.” It won’t be up to my Mother or Father or anyone in my family. For the first time I felt like I got that control back. That I am the one who controls my own life. So I will wait for that call and once I get it I will let everyone know what they say. I just hope that I won’t let anyone down if I decide to wait until I am 100% ready. Please continue to pray and I thank everyone of you for all your help and support during this time.
Love your Honeybee
Love your Honeybee
Friday, February 6, 2009
Pittsburgh Day 7
We had to be at the hospital at 0745 this morning. Her first test was an ECHO at 0800. During the ECHO Melissa had a student watching, his name was Sil, he had a heart/liver transplant 2 years and 5 months ago. He had a lot of encouraging words and told her what to expect. He told her that this week would be very stressful and when she was done to spend some time thinking about everything before making a decision. I think that she felt comfort from him. At 0915 Tracie Sabatine the Heart Transplant Coordinator took us to meet Dr. Tueteberg, Cardiologist. (man, was he cute). I stand corrected on Melissa's weight this week, on Monday she weighed 104. After everything that happened this week and all of the Zaroxolyn they gave her she is down to 93 lbs. That is a lot of water weight. Her little tummy and legs were really big yesterday, today she looks like a supermodel. This cardiologist told us more of the same, he talked about high risk because she has had 4 open hearts in the past and scar tissue, he also added that they may even push her back a year or two or even three depending on how the tests come out. He said they only pick people that are good candidates. I asked him about the emotional side of things and he said to expect a rollar-coaster. (that is an understatement)....He also added, "this will never be low risk, even in the best situation." He told her that neither organ is sick enough alone for a transplant, but together they may be. (Melissa's main problem is the Protein Losing Enteropathy, she loses protein into her digestive tract, and this is getting worse and can cause heart failure, that is why her weight changes so much. She goes into the hospital about once per month to have the fluid drained off of her tummy). When she is full of fluid like that, she gets short of breath and extreme fatigue. They don't want her to get too sick either, it is all about timing and balance." We asked the question, "how long can she go like she is, without the transplant?" We already knew the answer, they don't have a crystal ball. Melissa is so high risk that they are not sure that the risks outweigh the benefits. We will hold our breath until they get back to us with answers.
Melissa was then taken to do an exercise stress test, she walked for a mile and a half. Whoo Hooo!! You Go Mel!! The girl told her she was amazing. She has no idea.............Amazing doesn't touch her.
Then we went to lunch, (how rude). Melissa could not eat because she was having a right heart cath in one hour. For all of you non medical people, that is a catheter that they put in your neck vein and run it down to check the pressures in your heart chambers. This is a real simple procedure that takes only about 15 mins. (On a normal person).......After about 1 1/2 hours, I started to panic....I walked back to ask the nurses if she was okay and they called back and advised me that they were having trouble with her anatomy, they tried and tried to get past the right atrium but could not. They wanted to use dye to be able to visualize, (HELL NO!!) they knew that they could not use it. I told them that we brought a CD with a pulmonary angiogram on it and they could look at it. Well, we had given it to the Cardiac Surgeon and they could not find it until Melissa had had enough. They did not sedate her before hand because "it only takes a few little minutes." Nothing seemed to go easy for her this week and she is extremely worn out and discouraged. We are all very tearful.
We went back to Alexanders for dinner because we knew that the food was good, and we had taken enough chances this week. Thank you Ken (Melissa's dad) for dinner.
We are leaving tomorrow, can't say we are sad about that. Pittsburgh people have been so incredibly gracious, but we want to go home.
Melissa, Judy, Tammi and I are so thankful for all of the support in words and prayers. Please don't stop them. Visit Melissa's caringbridge site to keep up and to leave her words of encouragement.
www.caringbridge.org/visit/melissarowland
Melissa was then taken to do an exercise stress test, she walked for a mile and a half. Whoo Hooo!! You Go Mel!! The girl told her she was amazing. She has no idea.............Amazing doesn't touch her.
Then we went to lunch, (how rude). Melissa could not eat because she was having a right heart cath in one hour. For all of you non medical people, that is a catheter that they put in your neck vein and run it down to check the pressures in your heart chambers. This is a real simple procedure that takes only about 15 mins. (On a normal person).......After about 1 1/2 hours, I started to panic....I walked back to ask the nurses if she was okay and they called back and advised me that they were having trouble with her anatomy, they tried and tried to get past the right atrium but could not. They wanted to use dye to be able to visualize, (HELL NO!!) they knew that they could not use it. I told them that we brought a CD with a pulmonary angiogram on it and they could look at it. Well, we had given it to the Cardiac Surgeon and they could not find it until Melissa had had enough. They did not sedate her before hand because "it only takes a few little minutes." Nothing seemed to go easy for her this week and she is extremely worn out and discouraged. We are all very tearful.
We went back to Alexanders for dinner because we knew that the food was good, and we had taken enough chances this week. Thank you Ken (Melissa's dad) for dinner.
We are leaving tomorrow, can't say we are sad about that. Pittsburgh people have been so incredibly gracious, but we want to go home.
Melissa, Judy, Tammi and I are so thankful for all of the support in words and prayers. Please don't stop them. Visit Melissa's caringbridge site to keep up and to leave her words of encouragement.
www.caringbridge.org/visit/melissarowland
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