Friday, August 22, 2008
Today is Thursday August 21,2008 and it's 4:20am. As most of you know I am not up before the sun. :o) I thought I would get a head start on my most relaxing day. Since these days are so special and even though I have had so many tears and pain inside these past weeks. I have my good days and days I struggle. Last night, I wanted to post what happen during my procedures, but I just couldn't. So my schedule for today "do nothing" LOL okay well, I am going to go for a massage, go to lunch, lay out by the pool, and try to stay in my PJ's as long as I can today... I want to say THANK U for all of those prayers you have said, yesterday and days before that. I want you to know it helped SO MUCH YESTERDAY.... My day started off by working a few hours in morning. Then I met Jamie my (cousin) to pick me up and take me to the Hospital. On the way there I felt calm cause I kept telling myself I have all the love and support from my family and friends. I read each and everyone’s comments daily. After I checked in I sat in that wonderful waiting room area where things start to hit me... I kept t elling myself com e on lets get this thing started. I wanted to get in and get out asap... "See that's why I am late to things. (kidding) Cause waiting is the worst...The drive to the hospital is the most frightening for me cause of all of the unknowns of what is to come for that day. I can cry just thinking about it. But, today was different cause we didn't talk about ME. We talked about Jamie's life and it kept my mind off it. When they called me back, I couldn't bring Jamie back with me while they were doing the paracentisis the nurse said No.. But, I laid on the bed and talked to the nurse. I texed Jamie, to come back and since I have VIP up in this camp they let him back. I like to feel like I run the show while I am in the hospital since I’ve been there more then half my life.... Jamie, brought it to my attention that I say "Oh My God" a lot when they hit a nerve twice in my hand while doing my IV. But, I really couldn't say anything to the nurse since Beth, is truly a wonderful young nurse who looked like my best friend. I didnt want to make her mad since I see them all the time.. So when I was done they rolled my bed to the holding area for my liver biopsy. This was hard cause it was 12:30 pm and I was hungry and thirsty. That seemed to take a long time to get back to the operating room. It was 2:00PM when I finally got back there. I tried to think differently, just calm and in the moment., So20picture yourself20laying on the bed lifting your body up to scoot over to a cold table. Were all that fits is your body cause its so tiny even I feel like I am going to fall off. I was laying down talking to a nurse about what’s going to happen. This is where I go to my happy place me on a beach drinking Coronas... The nurse gave me benadryl to make me sleepy. Then they gave me versed which is suppose to knock you out and help someone relaxed. Well, it calmed my nerves just a little. " I kept talking while she was on the computer. . I kept telling her about my Vegas trip. She kept asking do you feel sleepy? I said yes, but wide awake. She gave me more versed and I was seeing things move in the room which were NOT moving. About 10 minutes went by she gave me more and told me we have to get started and covered my head with a blue sheet and made me keep my head to the left. She told me if I move my hands at all she would tie my hands down. I told her please don't do that I promise I wont move and I didn't. I talked the whole time to them while they said I did great. I am all done. "Thank GOD" I told them thank u and please take the sheet off my face so I could see. I sat up a little and said can I get off this table and get back into that other bed.....UHHH NO MELISSA, we will move you. ok, fine I could have gotten off that bed myself. :o) I got back to my room around 3:20pm. and the versed kicked in, great timing. WOW drugs, what they can do to someone? I had versed many, many times before and don't remember doing funny things like that. I got to eat and drink some soda which felt good. I went home ate some more and went to the hot tub. last night I laid in a lawn chair looked up at the beautiful sky and said, THANK U GOD for getting me through the two hardest test and cant wait for my results. I am very hopeful and know in my heart that whatever comes my way I WILL get through it and I know I have the WILL to fight. I guess deep down I am stubborn cause I will NEVER GIVE Up until the day I die.. This has been such a hard time for me and cant wait for Vegas. Thank u for this trip Dad I love u very much. Thanks Jamie for everything that you do. To my family, thank you and Terri, for helping me with everything.. what would u do with out me????? LOL ok back to bed MWAH.......I love u Momlove your honeybee &n
Tuesday, August 19, 2008
I can hear the despair and helplessness in your words. You are right.... Nobody really knows where you are or how you are really feeling. You have been through so much. I can only imagine what is bottled up inside of your beautiful little heart. Thank you for letting us hear and bear witness to your emotions and the pure difficulty of your task at hand. You are beautiful and brave to share your heart with us. Terri
Today is Tuesday 19, 2008 and I had a very busy day yesterday. I got home last night and all I was thinking about was my long day. Sometimes I wonder how can I keep doing this. When will this all end and will it ever end for me? I have been so stressed and emotional today. I have moments where I wanna just lay down and die .Or crawl in a hole and never come out.. I told my Mom its so different when it's happening to you.. If I was reading about someone I would have NO idea what they are feeling in the inside. At least they can go on with there day or go home from a long day and have a beer. NOT ME OF COURSE!!!! Im just very sad and very scared that things will get worse. I will again get bad news. I called one of my doctors today and told her I read up on the liver biospy and what if during the procedure they hit a lung or my gallbladder then I will have more problems...Just my luck... I tried to reschedule it so I could get out of it just one more week but they wont let me... So I will get up go to work for a couple of hours then go have it done.... Cant wait for my exciting day tomorrow THIS SUCKS
honeybee
honeybee
Monday, August 18, 2008
August 18, 2008
Today was a big day. No doubt….. Judy and Melissa picked me up around 9am. As we drove to the Mayo Clinic it felt like there was a lot of tension in the air!! Except for Melissa….she was busy dancing and rocking out to Madonna on her IPOD. Of course…….
The first appointment was with the Liver guy. They called us back to the room before Judy was done parking the car. Holy Cow, they are serious here. We first saw the Nurse Practitioner Michele, she was really nice and did some vitals. Melissa’s blood pressure was 82/44. Yeah…. Then Dr. Aqel and Michele talked to us. Dr. Aqul is very aggressive. Here is the bottom line as I understand it. Melissa needs several more tests before he can determine what is best for her from a liver stand point. These are scheduled as follows:
Liver panel blood test…… We did this right after the appointment
Liver Biopsy……………..scheduled for Wednesday August 20, at 1pm
Esophageal Pill Scan………. Scheduled for Friday August 22, at 1pm
CT scan………….To be announced.
Psychiatry appointment……., is scheduled for Friday August 29, at 10am. (Needed to be done years ago)
We re-meet with the Liver Guy for the following on Sept 2, at 1:30p.
#1 Liver is worse - she may need Heart and Liver Transplant
#2 Liver is the same - try the medicine to strengthen her liver again.
This time the treatment will be more intense.
#3 Liver is all better - move forward towards Transplantation.
The Mayo clinic in Phoenix has not a done a Heart/Liver Transplant yet. Every test Melissa takes is measuring some sort of risk. They are not crazy about doing the first Heart/Liver Transplant on a severely high risk patient.
Medicine can not be used to strengthen the liver after transplant. So we want it to be really strong before hand. The biopsy will show any scar tissue on the liver. The pill scan is amazing. She will have some sort of monitor taped to her chest and a pager like thing on her waist. She will swallow a pill that has a disposable camera in it. It will take pictures of her esophagus and everything else on the way down. (Aint that cool?)
Then we went to the lobby for a big melt down. Man this stuff is hard to take. We thought we were at the end, but we have only just begun. We feel out of control of any thing that is happening. Very scary. One minute we are joking and laughing and the next we are crying. Whew…………….. Then we went to lunch, (man Melissa can eat) Thank you for paying by the way…. We went over it and over it while we ate. I think we all understood it by the time lunch was over. Next appointment is with the Transplant guy.
Here is where Melissa decided that her lipstick needed to be re applied in the office, because the guys name is Dr. Studley. We were mistaken his name is Dr. Steidley, he is the transplant dr. and the heart failure dr. We had the wrong impression as to why we were there. He very nicely explained the facts. Here they are:
We have to get on the right path to keep Melissa healthy, happy and active as possible. We have to look at every test, every option. (We thought they had) He explained that Heart Transplant could take a long time and we need to get Melissa’s fluid from the PLE under control to keep her out of heart failure now, while we are waiting. (This guy is very long winded and our anxiety increased while listening to his very long story) He did an exam on Melissa, he did express how she had the world’s best teeth! Her blood pressure is now 80/44. (he thought his humor would increase it) He explained that Melissa has several big hurdles in front of her. Again, here is my best impression:
#1 Liver function
#2 Keep her out of heart failure
Wants to try Ultra filtration. It is kind of like dialysis, 2 IV’s
Pulling fluid off without pulling off potassium.
#3 put together all info and give to an informal committee to see she
Is a good candidate for transplant in AZ.
#4 If not in AZ, look elsewhere for a program that will accept her.
Then it would go to a formal committee. All this before she knows, he said we are not talking years, but months before she knows if she is a candidate. He talked a bit about the list.
1a. People are very sick, in the ICU, needing constant support
1b. People using IV medicine to keep their pressure up, may or may
Not be in the hospital.
2. This is where Melissa is
7. On hold (I don’t know if he said anything between 2 and 7)
Oh yea, then he mentioned that she needs a blood test for antibodies, I didn’t totally get this, (it is from the blood transfusions she had when she was five) If she has them, (antibodies) it will be a higher risk for transplant. When you are praying, pray for 0 antibodies.
What’s next for this guy:
Antibodies test: did it today after the appointment
Get the Ultra filtrations set up
Do an overnight oxygen sat check
Start keeping a daily weight log .
Meanwhile, Melissa is going to Las Vegas this weekend with her friends. (Finally, I think this has been scheduled about 10 times) September 4th she goes to California for a wedding (congrats Brian)
The doctors said after these two trips they want Melissa to clear her calendar for anything that they may need to do to her. Yea!!
Today was a big day. No doubt….. Judy and Melissa picked me up around 9am. As we drove to the Mayo Clinic it felt like there was a lot of tension in the air!! Except for Melissa….she was busy dancing and rocking out to Madonna on her IPOD. Of course…….
The first appointment was with the Liver guy. They called us back to the room before Judy was done parking the car. Holy Cow, they are serious here. We first saw the Nurse Practitioner Michele, she was really nice and did some vitals. Melissa’s blood pressure was 82/44. Yeah…. Then Dr. Aqel and Michele talked to us. Dr. Aqul is very aggressive. Here is the bottom line as I understand it. Melissa needs several more tests before he can determine what is best for her from a liver stand point. These are scheduled as follows:
Liver panel blood test…… We did this right after the appointment
Liver Biopsy……………..scheduled for Wednesday August 20, at 1pm
Esophageal Pill Scan………. Scheduled for Friday August 22, at 1pm
CT scan………….To be announced.
Psychiatry appointment……., is scheduled for Friday August 29, at 10am. (Needed to be done years ago)
We re-meet with the Liver Guy for the following on Sept 2, at 1:30p.
#1 Liver is worse - she may need Heart and Liver Transplant
#2 Liver is the same - try the medicine to strengthen her liver again.
This time the treatment will be more intense.
#3 Liver is all better - move forward towards Transplantation.
The Mayo clinic in Phoenix has not a done a Heart/Liver Transplant yet. Every test Melissa takes is measuring some sort of risk. They are not crazy about doing the first Heart/Liver Transplant on a severely high risk patient.
Medicine can not be used to strengthen the liver after transplant. So we want it to be really strong before hand. The biopsy will show any scar tissue on the liver. The pill scan is amazing. She will have some sort of monitor taped to her chest and a pager like thing on her waist. She will swallow a pill that has a disposable camera in it. It will take pictures of her esophagus and everything else on the way down. (Aint that cool?)
Then we went to the lobby for a big melt down. Man this stuff is hard to take. We thought we were at the end, but we have only just begun. We feel out of control of any thing that is happening. Very scary. One minute we are joking and laughing and the next we are crying. Whew…………….. Then we went to lunch, (man Melissa can eat) Thank you for paying by the way…. We went over it and over it while we ate. I think we all understood it by the time lunch was over. Next appointment is with the Transplant guy.
Here is where Melissa decided that her lipstick needed to be re applied in the office, because the guys name is Dr. Studley. We were mistaken his name is Dr. Steidley, he is the transplant dr. and the heart failure dr. We had the wrong impression as to why we were there. He very nicely explained the facts. Here they are:
We have to get on the right path to keep Melissa healthy, happy and active as possible. We have to look at every test, every option. (We thought they had) He explained that Heart Transplant could take a long time and we need to get Melissa’s fluid from the PLE under control to keep her out of heart failure now, while we are waiting. (This guy is very long winded and our anxiety increased while listening to his very long story) He did an exam on Melissa, he did express how she had the world’s best teeth! Her blood pressure is now 80/44. (he thought his humor would increase it) He explained that Melissa has several big hurdles in front of her. Again, here is my best impression:
#1 Liver function
#2 Keep her out of heart failure
Wants to try Ultra filtration. It is kind of like dialysis, 2 IV’s
Pulling fluid off without pulling off potassium.
#3 put together all info and give to an informal committee to see she
Is a good candidate for transplant in AZ.
#4 If not in AZ, look elsewhere for a program that will accept her.
Then it would go to a formal committee. All this before she knows, he said we are not talking years, but months before she knows if she is a candidate. He talked a bit about the list.
1a. People are very sick, in the ICU, needing constant support
1b. People using IV medicine to keep their pressure up, may or may
Not be in the hospital.
2. This is where Melissa is
7. On hold (I don’t know if he said anything between 2 and 7)
Oh yea, then he mentioned that she needs a blood test for antibodies, I didn’t totally get this, (it is from the blood transfusions she had when she was five) If she has them, (antibodies) it will be a higher risk for transplant. When you are praying, pray for 0 antibodies.
What’s next for this guy:
Antibodies test: did it today after the appointment
Get the Ultra filtrations set up
Do an overnight oxygen sat check
Start keeping a daily weight log .
Meanwhile, Melissa is going to Las Vegas this weekend with her friends. (Finally, I think this has been scheduled about 10 times) September 4th she goes to California for a wedding (congrats Brian)
The doctors said after these two trips they want Melissa to clear her calendar for anything that they may need to do to her. Yea!!
Saturday, August 9, 2008
How I really feel!
What it's been like living with My heart condition:
Every since I was a little girl, I have never known what it's like NOT having a heart condition. My whole life I had to grow up knowing that there are things I could and could not do. I was very lucky to have a wonderful loving Mother and Father that would do anything for me.. It's been incredible the love and support that I have gotten from my family and friends. They have provided all of that for me over the years. I can't go into every detail about what it was like but, it never bothered me to much as a child. It effected me more as adult then anyone could ever imagine. People aren't always normal but I hope I will feel that normal feeling after my heart transplant. Every time I turn around there has been something I had to over come. An obstacle that I had to face head on, and it always has seemed to be a life or death situation. I stopped asking the "WHYS" because I knew there must be a reason... As they always say, "GOD doesn't give you something you cant handle... ". So I must be one lucky women that He has given me all of these things to over come. The one thing that I have done for the last 12 years is kept a journal . I now have boxes of journals and I would like to think I got that from my Granny. I have written in it every night before I go to bed. I write about what I did that day, including those Hot dates I love to go on. : ) At the end of my day I write 5 things that I am grateful for. So I am asking if you leave a comment on my caringbridge.com website please write 1 thing you are grateful for. It definitely will make you appreciate your life a little more..
The loneliness, stress and sadness that I have felt is not from my heart condition, but from the Protein Losing Enteropathy. aka (fluid/Edema) What does it feel like on my stomach? It feels like I have been pregnant. The tightness and uncomfortable feeling, the constant worry of what shirt will I wear to hide it today? Or will I be able to wear my heels to go out tonight because the fluid is also on top of my feet 24/7 from my toes all the way up. (This is an every day thing.) Maybe one day I will know what its like to walk from the couch to the bathroom and not get short of breath. I look forward to the day I WILL hike a mountain with my best friend. So watch out Annette, I will be running up that mountain... What makes me happy in life is just being around my friends who have kept me "sane" They don't ask how I am everyday they ask me things like what are we doing tonight? Or ask me about my personal life... Its a lot to talk about at times ..LOL So in two weeks when I get on that flight to go to Vegas with my friends the last thing I am thinking about is my heart or my next Dr. apt on August 18, 2008. So while you take this journey with me I will keep you posted on how I REALLY am doing... I love you all with all my heart and soul. Thank you Terri and Mom, for keeping this going. I know there will be times when you will have to write for me....
Every since I was a little girl, I have never known what it's like NOT having a heart condition. My whole life I had to grow up knowing that there are things I could and could not do. I was very lucky to have a wonderful loving Mother and Father that would do anything for me.. It's been incredible the love and support that I have gotten from my family and friends. They have provided all of that for me over the years. I can't go into every detail about what it was like but, it never bothered me to much as a child. It effected me more as adult then anyone could ever imagine. People aren't always normal but I hope I will feel that normal feeling after my heart transplant. Every time I turn around there has been something I had to over come. An obstacle that I had to face head on, and it always has seemed to be a life or death situation. I stopped asking the "WHYS" because I knew there must be a reason... As they always say, "GOD doesn't give you something you cant handle... ". So I must be one lucky women that He has given me all of these things to over come. The one thing that I have done for the last 12 years is kept a journal . I now have boxes of journals and I would like to think I got that from my Granny. I have written in it every night before I go to bed. I write about what I did that day, including those Hot dates I love to go on. : ) At the end of my day I write 5 things that I am grateful for. So I am asking if you leave a comment on my caringbridge.com website please write 1 thing you are grateful for. It definitely will make you appreciate your life a little more..
The loneliness, stress and sadness that I have felt is not from my heart condition, but from the Protein Losing Enteropathy. aka (fluid/Edema) What does it feel like on my stomach? It feels like I have been pregnant. The tightness and uncomfortable feeling, the constant worry of what shirt will I wear to hide it today? Or will I be able to wear my heels to go out tonight because the fluid is also on top of my feet 24/7 from my toes all the way up. (This is an every day thing.) Maybe one day I will know what its like to walk from the couch to the bathroom and not get short of breath. I look forward to the day I WILL hike a mountain with my best friend. So watch out Annette, I will be running up that mountain... What makes me happy in life is just being around my friends who have kept me "sane" They don't ask how I am everyday they ask me things like what are we doing tonight? Or ask me about my personal life... Its a lot to talk about at times ..LOL So in two weeks when I get on that flight to go to Vegas with my friends the last thing I am thinking about is my heart or my next Dr. apt on August 18, 2008. So while you take this journey with me I will keep you posted on how I REALLY am doing... I love you all with all my heart and soul. Thank you Terri and Mom, for keeping this going. I know there will be times when you will have to write for me....
Honoring Emotions
“Think Positively”. How often have we heard this, and what does it mean? In the life of a person/family living with a chronic heart disease, there is a lot of talk on thinking positively. I wonder… do we lock away the real feelings in hopes that the good feelings will take over? Do we think that if we do not speak of these hard emotions that they will simply go away? What really happens here is a pretty face with a whole lot of unprocessed pain behind it. Then at the most inopportune time the real emotion rears its ugly head and comes out as anger, depression and despair. It feels like nobody really knows us. How would it be if we were able to honor each emotion in full as it is felt? We have been given this human body to have human experiences. This includes all of our feelings, even the so-called “negative” ones. To truly be positive, we are learning that honoring the emotion, slowing down to see what is going on inside helps you go deeper into the experience, when you go deeper you are able to move through it instead of around it. Then you can choose to focus on what you really want, and how you want to deal honestly with what is happening. It enables you to see what the positive can be. This puts more choice and more control in your life.
A note on fixing. We all want the people in our lives to feel good and to be happy. By habit we say things like…”don’t feel that way”, “why do you feel that way”, and “it is time to get over it”. Another habit is giving advice. Unless asked for, we do not really want advice, what we most want is to be heard. Having a non-judgmental heart sit in the experience with us and listen … it is the most intimate, healing and rewarding sentiment. Essentially, this is where the real “fix” comes in.
A note on fixing. We all want the people in our lives to feel good and to be happy. By habit we say things like…”don’t feel that way”, “why do you feel that way”, and “it is time to get over it”. Another habit is giving advice. Unless asked for, we do not really want advice, what we most want is to be heard. Having a non-judgmental heart sit in the experience with us and listen … it is the most intimate, healing and rewarding sentiment. Essentially, this is where the real “fix” comes in.
Monday, August 4, 2008
A Note of Thanks to St. Joseph's Hospital-Phoenix 7-28-08
Melissa’s first step to the heart transplant was to have another heart catheterization. It went well, everything is a go from a heart standpoint. The only thing that has changed is the pressure numbers in the Fontan, Two years ago they were 14, now they are 17-18. (this is the pressure back up I earlier explained)
I want to personally thank the team who took care of her. What stood out most in my mind was the peaceful look on Melissa’s face when she came out of the procedure. Melissa said that she felt so comforted and safe with this team. I also felt the same. The bedside manner was calm, reassuring and very understanding of a family who has been down this bumpy road before. Being in this business myself, I felt proud of the care they offered my Melissa and my family. Thank you St. Joseph’s Cath Lab, Luke Lamers, MD., Andy Miller, MD., Deb RN, Angela ,RN, Donna ,RT, Colleen ,RT. Special thanks to Annette, RN who was able to start Melissa’s IV. It takes a great talent and a compassionate heart to care for people and make them feel like you truly love them.
I want to personally thank the team who took care of her. What stood out most in my mind was the peaceful look on Melissa’s face when she came out of the procedure. Melissa said that she felt so comforted and safe with this team. I also felt the same. The bedside manner was calm, reassuring and very understanding of a family who has been down this bumpy road before. Being in this business myself, I felt proud of the care they offered my Melissa and my family. Thank you St. Joseph’s Cath Lab, Luke Lamers, MD., Andy Miller, MD., Deb RN, Angela ,RN, Donna ,RT, Colleen ,RT. Special thanks to Annette, RN who was able to start Melissa’s IV. It takes a great talent and a compassionate heart to care for people and make them feel like you truly love them.
Sunday, August 3, 2008
A DAY Off
Melissa's first request in this voyage is a day off. She has chosen Friday.
This full time job of living with a congenital heart disease can be daunting. Now with the promotion to a "heart transplant recipient in waiting" it can be all consuming. Melissa wants all of the support, love and prayer from all of her family and friends, but she also wants a day off. From this point forward we will not talk about her heart on Fridays. This includes: Asking how she is, asking how she feels, asking how much fluid she has or hoping she feels better. She is free to be a beautiful 32 year old woman. (This is where we talk about her love life).
This full time job of living with a congenital heart disease can be daunting. Now with the promotion to a "heart transplant recipient in waiting" it can be all consuming. Melissa wants all of the support, love and prayer from all of her family and friends, but she also wants a day off. From this point forward we will not talk about her heart on Fridays. This includes: Asking how she is, asking how she feels, asking how much fluid she has or hoping she feels better. She is free to be a beautiful 32 year old woman. (This is where we talk about her love life).
The Journey Begins- July 27, 2008, A letter From Judy
Melissa is going to have a Heart Transplant. We always knew this day might come. It's something we had hoped would never have to be, but yet we knew if the day came that she would need one, we would be ready because I know that God has been with her since the day she was born. I know we are all nervous, scared and a little emotional. But as I always said, "There is a guardian angel looking after Melissa". The angels say, "be open to the loving messages that you receive through feelings and visions for they are real indeed". So, I hope we will all be positive and have a "open heart" and know that things will go well.
The vision I see for Melissa is after she gets her new heart she will be well and happy again. I am right beside you and I always will be. I love you very much. I know this new heart is just waiting for you. You will be happy and full of life when this journey is accomplished.
The vision I see for Melissa is after she gets her new heart she will be well and happy again. I am right beside you and I always will be. I love you very much. I know this new heart is just waiting for you. You will be happy and full of life when this journey is accomplished.
Friday, August 1, 2008
Reflections of my Heart
April 16, 1976 at 9:06pm the most courageous little girl I know was born. Melissa is my cousin, for the past 32 years she has shaped my life's' passion with her inspirational story. This blog will be my attempt to tell her story up until now and take you along into the future on the journey of her heart transplant. As for the title: Melissa means Honeybee in the baby books.
Melissa was born at Aurora Presbyterian Hospital, her mom (Judy) knew that something was wrong right away even though she couldn't get anyone to listen. Within days they knew that Melissa had a heart murmur. "Not to worry", they said. A few days later they found out that Melissa had Tricuspid Atresia , this means that there is not a valve between the right atrium and the right ventricle., she also had a VSD, (ventricular septal defect) This is a hole in the septal wall between the ventricles. Her right ventricle was very little and not pumping blood the way it should. Then they also found an ASD, (atrial septal defect). An atrial septal defect is a hole in the wall between the two atriums. This hole was enabling the blood from the right side to mix with the oxygen rich blood on the left side, thus giving Melissa a blueish tint to her skin. This beautiful little hole saved her life. Within days they had her in the operating room to put a balloon in the hole and stretch it even bigger. The next few months proved very difficult, Melissa was miserable and cried 24/7. At her next Cardiology appointment at Denver Children's Hospital the doctor knew immediately that Melissa was in trouble. He took her from Judy arms and ran down the hallway for surgery. The hole was closing and they put a lifesaving Shunt into the hole to keep it open. A day later the Shunt closed down and Melissa was back in the operating room for yet another open heart surgery. The family was told at this time that Melissa would need more surgery as she grew up. When she was 5 years old they went to the Mayo Clinic in Rochester, Minnesota. Melissa underwent open heart surgery and had the Fontan procedure. The Fontan is where they bypass the right ventricle and connect the right atrium to the pulmonary artery. (They had only done 200 of these surgeries at the Mayo Clinic). The surgery was successful at first, then Melissa started having difficulty with fluid retention. Her pulmonary artery was blocking from scar tissue. They also realized while trying to take out the breathing tube that they had accidentally severed her phrenic nerve and she was unable to breathe on her own. They tried several times to remove it with no avail. She had a surgery to put a tracheostomy in for her to breathe. She was on a respirator for the remaining time at the Mayo Clinic to allow the phrenic nerve to regrow. About 2 months after the first Fontan they took her in for a re-do. (This was un-heard of, as she was the first child to have a Fontan re-do). She was released from Mayo Clinic after about 6 months, via air ambulance to the care of Denver Children's Hospital. When they came back to Denver they tried to remove the trach tube again, at this point they knew that she had grown scar tissue in the trachea and they tried a balloon procedure to stretch it every month for about one year. They then decided to do a reconstruction using a piece of bone from her ribs. Eventually, she healed nicely and breathes well on her own. She continued to have fluid build up and go in and out of congestive heart failure while living in Denver. She was on constant oxygen due to the high altitude. The family was advised as a lifesaving measure to move to lower altitude. At that time the family moved to Arizona. She has lived as normal life as possible with a multitude of problems with fluid retention and occasional heart failure. (she also has no ability to clean and organize her room).
The Fontan surgery has had one major side effect and it is call PLE, protein losing enteropathy. It has taken me a lot of study to get and to understand what PLE is. Let me try to explain it. The right ventricle is no longer there, it is responsible for pumping the blood from the right side to the left. Now it swirls passively into the fontan and moves slowly into the left side. The passive swirl causes backup in the right side, eventually the back up effects everything including the liver and the intestines. The intestines then gets inflamed. This chronic inflammation causes Melissa to not be able to retain her protein. She leaks her protein into her belly and her legs. (Here is my analogy, it is like a traffic jam, a bad traffic jam......where the freeway is so backed up that all of the oncoming traffic gets blocked up and then the side streets are blocked up and then road rage begins). Currently, Melissa is retaining so much fluid from the PLE that she must have a pericentisis (fluid taken out of her belly) once every three weeks. She also gets IV Albumin (protein). Her potassium is very low and she must watch her levels constantly. Potassium is vital to a normal heart rhythm.
Finally, it is time to talk about Heart Transplant. This news came in the spring of 2008.
Melissa was born at Aurora Presbyterian Hospital, her mom (Judy) knew that something was wrong right away even though she couldn't get anyone to listen. Within days they knew that Melissa had a heart murmur. "Not to worry", they said. A few days later they found out that Melissa had Tricuspid Atresia , this means that there is not a valve between the right atrium and the right ventricle., she also had a VSD, (ventricular septal defect) This is a hole in the septal wall between the ventricles. Her right ventricle was very little and not pumping blood the way it should. Then they also found an ASD, (atrial septal defect). An atrial septal defect is a hole in the wall between the two atriums. This hole was enabling the blood from the right side to mix with the oxygen rich blood on the left side, thus giving Melissa a blueish tint to her skin. This beautiful little hole saved her life. Within days they had her in the operating room to put a balloon in the hole and stretch it even bigger. The next few months proved very difficult, Melissa was miserable and cried 24/7. At her next Cardiology appointment at Denver Children's Hospital the doctor knew immediately that Melissa was in trouble. He took her from Judy arms and ran down the hallway for surgery. The hole was closing and they put a lifesaving Shunt into the hole to keep it open. A day later the Shunt closed down and Melissa was back in the operating room for yet another open heart surgery. The family was told at this time that Melissa would need more surgery as she grew up. When she was 5 years old they went to the Mayo Clinic in Rochester, Minnesota. Melissa underwent open heart surgery and had the Fontan procedure. The Fontan is where they bypass the right ventricle and connect the right atrium to the pulmonary artery. (They had only done 200 of these surgeries at the Mayo Clinic). The surgery was successful at first, then Melissa started having difficulty with fluid retention. Her pulmonary artery was blocking from scar tissue. They also realized while trying to take out the breathing tube that they had accidentally severed her phrenic nerve and she was unable to breathe on her own. They tried several times to remove it with no avail. She had a surgery to put a tracheostomy in for her to breathe. She was on a respirator for the remaining time at the Mayo Clinic to allow the phrenic nerve to regrow. About 2 months after the first Fontan they took her in for a re-do. (This was un-heard of, as she was the first child to have a Fontan re-do). She was released from Mayo Clinic after about 6 months, via air ambulance to the care of Denver Children's Hospital. When they came back to Denver they tried to remove the trach tube again, at this point they knew that she had grown scar tissue in the trachea and they tried a balloon procedure to stretch it every month for about one year. They then decided to do a reconstruction using a piece of bone from her ribs. Eventually, she healed nicely and breathes well on her own. She continued to have fluid build up and go in and out of congestive heart failure while living in Denver. She was on constant oxygen due to the high altitude. The family was advised as a lifesaving measure to move to lower altitude. At that time the family moved to Arizona. She has lived as normal life as possible with a multitude of problems with fluid retention and occasional heart failure. (she also has no ability to clean and organize her room).
The Fontan surgery has had one major side effect and it is call PLE, protein losing enteropathy. It has taken me a lot of study to get and to understand what PLE is. Let me try to explain it. The right ventricle is no longer there, it is responsible for pumping the blood from the right side to the left. Now it swirls passively into the fontan and moves slowly into the left side. The passive swirl causes backup in the right side, eventually the back up effects everything including the liver and the intestines. The intestines then gets inflamed. This chronic inflammation causes Melissa to not be able to retain her protein. She leaks her protein into her belly and her legs. (Here is my analogy, it is like a traffic jam, a bad traffic jam......where the freeway is so backed up that all of the oncoming traffic gets blocked up and then the side streets are blocked up and then road rage begins). Currently, Melissa is retaining so much fluid from the PLE that she must have a pericentisis (fluid taken out of her belly) once every three weeks. She also gets IV Albumin (protein). Her potassium is very low and she must watch her levels constantly. Potassium is vital to a normal heart rhythm.
Finally, it is time to talk about Heart Transplant. This news came in the spring of 2008.
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