Happy Holidays Everyone!!

I just wanted to tell everyone hello and that I hope all of you are enjoying your Holiday Season. I am doing really great and have been feeling pretty good. I still get fluid on me but, I am able to manage it with my medicine. I have been getting involved with my church and have been going every Sunday. It seems to really help me to be more calm and to have 'hope'. I know that what I have to go through is very scary for my family and friends. I know that I will be just fine and everything will work out. I've been having to give a lot of my medical stuff to my Mother, and my Cousin is organizing the fund raising for my 'Honeybee Heart Foundation'. It has taken a load off of me cause the last thing I want is more stress. I truly am looking forward to getting my new heart and liver cause I know my life will CHANGE.'It's about darn time' : ) I have a vision board where I have things that I am looking forward to after my transplant. This keeps me focused and positive.

Just to share a little story with all of you. The other night I was laying by the Christmas tree and I told my Mom, 'wouldn't you be shocked if the day after my surgery I got up and told you that I wanted to go for a walk around the nurses station?' She laughed and said, 'now Melissa you are going to be in way to much pain to do that.' So you know me I will have to prove her wrong as I have done soooo many times before. Thank you all for the support, the love, prayers and most of all your kind words in my guest book...
love, Honeybee

Happy Holidays Everyone!!

I just wanted to tell everyone hello and that I hope all of you are enjoying your Holiday Season. I am doing really great and have been feeling pretty good. I still get fluid on me but, I am able to manage it with my medicine. I have been getting involved with my church and have been going every Sunday. It seems to really help me to be more calm and to have 'hope'. I know that what I have to go through is very scary for my family and friends. I know that I will be just fine and everything will work out. I've been having to give a lot of my medical stuff to my Mother, and my Cousin is organizing the fund raising for my 'Honeybee Heart Foundation'. It has taken a load off of me cause the last thing I want is more stress. I truly am looking forward to getting my new heart and liver cause I know my life will CHANGE.'It's about darn time' : ) I have a vision board where I have things that I am looking forward to after my transplant. This keeps me focused and positive.

Just to share a little story with all of you. The other night I was laying by the Christmas tree and I told my Mom, 'wouldn't you be shocked if the day after my surgery I got up and told you that I wanted to go for a walk around the nurses station?' She laughed and said, 'now Melissa you are going to be in way to much pain to do that.' So you know me I will have to prove her wrong as I have done soooo many times before. Thank you all for the support, the love, prayers and most of all your kind words in my guest book...
love, Honeybee

Great News All,

We have gotten approval from Banner for Melissa to go to Pittsburgh. We have tentatively planned for the 24th of January. We are elated, Christmas gifts came early in the way of this great news. We will keep you updated on everything as it arises. Until then........ Have a great Holiday.........kiss and hug everyone that means anything to you. Give the gift of your presence and love.

Terri

Happy Holidays to all of our Friends and Family,

A short update on Melissa. We think we are nearing completion on the insurance mess. We have been gratefully turned down by the last 'in network' hospital who 'thinks they may want to try a heart/liver'. Just waiting now for the approval from Banner. Then we will be arranging our trip to Pittsburgh. Hopefully, this will happen sometime in January.

A fund raising account has been set up, however, it is not a tax deductible account at this time. Really cool bracelets have been ordered and will be here in 4 weeks. Yeah! We will be fund raising hard once the plan is in hand. We have all sorts of things planned. Thank you all for your continued support for Melissa. Make your Holidays Happy!!!

Terri

It is Tuesday November 18. It has been awhile since we have updated. Judy has been busy calling every heart and lung program this side of the world, and to no avail. We are still going to Pittsburgh. We will probably make plans for sometime after the first of the year. That said Melissa has been doing really well. Yesterday was the first time since August that she needed a paracentesis. Shawn took her to the Mayo Clinic for the day. He told me that they tried 18 times to get an IV before finally getting one. Melissa claims, “I am one tough girl”. Her Potassium was low and she could feel it in her body before going to the Mayo, so she took extra before leaving. Upon arriving she had blood work, then the paracentesis. It was quiet painful this time because they didn’t think she had as much fluid as the times before. Emily was her nurse today and Melissa likes her a lot. They were able to pull 2.2 liters of flu id from her belly. (Barbara Sullivan and Dr. Steidley came by to visit). Melissa gets so much relief from this procedure once it is over. Her blood pressure was 90/50 and her Potassium was 3.4. She is feeling good about these numbers. However, her Albumin was very low at 2.0 so they started an Albumin infusion. Melissa states, “I am so happy my day is over and I am on with the rest of my beautiful week. Love you all and thank you Shawn for being there for me and the talk on our drive back home. Love you all very much”.

More Scuttle

Just an update....Judy heard from the insurance lady again and apparently there are 3 other hospitals in the network for us to look at. (personally, I think she called them and asked if they do heart and liver transplants? Yes, we do heart, and yes we do liver. I don't believe that they do both at the same time, our docs would have known about these options). We also heard that USC in California is out. Dr. Steidley is checking into the other 3 but, he still thinks that Pittsburgh is our option.

On a fun note, Melissa's sister and nieces were in town this past weekend. We enjoyed some quality family time. It felt great to be together. Until next time....................Terri

I need to explain a little better about the insurance part of this, since I've had some calls. Blue Cross, Blue Shield is Melissa's primary insurance. Banner is her secondary insurance. So, it would be better to go in network with both. (We will have more benefits). If USC says "NO" then we will go to Pittsburgh and Banner may help since we've exhausted all other in network options. I know this is confusing. Let me know if you need further info.

Good Morning,

Yesterday Melissa had an appointment at the Cardiologists office. She is doing pretty good. Her B/P was 80/50, Potassium was 3.5 (a little low) her O2 Sat was 94%. Her test that was done on her overnight O2 sat had good results with the Oxygen. She is getting used to the Rivatio, (less headaches). She is carrying a bit of fluid on her, but not enough to do a pericentisis. This is wonderful, she has not been tapped since August.

About Pittsburgh, there has been a bit of a Insurance sna-foo. Seems Pittsburgh is out of network so we are now looking at the only hospital that does Heart/Liver in the Banner network. It is the University of Southern California. The Doctors are going to investigate this week. If they accept her we will go there for an interview, if not we are going to Pittsburgh. So, we are still in a holding pattern. Please keep writing to Melissa, it is daunting to be in this see-saw state. Your messages and prayers are a constant uplift for her.

Terri

THURSDAY, OCTOBER 09, 2008 10:53 AM, CDT

Melissa, Congratulations on finding such a positive way to calm your anxiety. You never stop amazing me. Time and time again you have proven your self knowledge with your medications, I know of no other person who can sense the chemistry of their body like you do. By never second guessing yourself and keeping in good communication with your Doctors you are a shoe in for the perfect patient.

THURSDAY, OCTOBER 09, 2008 10:41 AM, CDT

I need to to write this because this happened yesterday. I was doing really good in the morning and suddenly I started to feel extremely anxious. It was about 1:15 PM and I knew I had my second appointment with the Psychiatrist. I knew I had to tell her that I had decided to go off my antidepresant medicine that I had been on for a month. The reason I went off of it is because I felt it was making me feel worse. I was getting very depressed and crying daily and just didn't feel like myself. I was getting anxious cause I was worried she'd get mad at me. My heart was racing my body was feeling so shakey I felt scared inside I didnt want her to be upset with me. I knew I would have to leave in an hour or so. I took a deep breath and put in my DVD of the Madonna concert Confession Tour 2007 that I went to. I turned it up full blast and watched it and danced for about an hour. While I was dancing I started to cry cause I didnt feel that anxiety anymore. I was so HAPPY that I took control of how I was feeling and turned it around with something I love... I hope that next time this happens I will take that deep breath and dance my little tushie off....... love. honeybee

TUESDAY, OCTOBER 07, 2008 06:58 PM, CDT

More tiny bits of information came today. Dr. Steidley talked to Judy and I about Mayo Clinic "shying" away from accepting Melissa. He said it is still an option but..........Lots of hesitation. He said that they are nervous about the Protein Losing Enteropathy. This increases your risks for healing. Melissa says that she isn't some people, and they haven't seen how good she can heal. (Little Miss Sassy Pants) So far, Pittsburgh, (see I can spell it) has not batted an eye at anything. We are moving forward with Pittsburgh for now with Mayo still on the back burner as choice number 2. Meanwhile, my Melissa is doing a lot better. We are not sure why, she started a new medicine and O2 at night, but it was only a week ago. She has been doing well since her last tap. She had her last tap in August. It makes me sure that all of the praying and love sending that all of us are doing is really working. Keep it coming!! Love to All.

Good Morning All,

I must apologize for my spelling in the last few notes. (Now I know how to spell Pittsburgh and Minnesota)

MONDAY, OCTOBER 06, 2008 03:17 PM, CDT

Small update today, The University of Pittsburgh called for more medical information from Judy. (it looks like we are moving forward in that direction) Melissa talked with the Nurse Pract. who is on her case and she said that UCLA is a NO. So we can mark that off of the list. I found out a bunch of information on making a tax deductible site for fund raising to help the family with Transportation, food and lodging. More info to come on that. Melissa's next appt was supposed to be on the 14th, but they changed it to the 28th. Have a great day. Terri

SUNDAY, OCTOBER 05, 2008 09:03 AM, CDT

How am I doing with everything that's going on?

As I talk to my life coach on a daily basis and who keeps me going on. Terri, is helping me more then she will ever know. She sometimes ask me questions that I have never even thought about. Or will ask me questions that I don't wanna write about. But, I never put things in here that I don't want people to read or know about me. I know she loves when I write in here cause she knows I will always tell the truth on how I really am doing.

So how do I feel about somebody having to die for me to live? WOW..... That's really personal and very deep but, I love the challenge of really thinking about something so deep. Well, I have always known that God has a plan for all of us. I think God already knows who's heart I will be lucky enough to get. I believe he is holding on to that person right now cause they still have work to do here on earth. Then when the day comes when he needs more help up there he will be bring them to heaven. Then I will get their loving heart inside of me and will continue to do what I need to do here on earth until I am ready to go up to heaven where I will be home forever. Just waiting until I see all of you there.

Do I wanna meet the family who's loved one passed on? Of course I do..... I wanna them to know that I will never forget that person and they are still living on inside of me.

(I know my Mom will want to know if they keep their room clean cause maybe I will get that from them.. j/k)

I will ONLY meet them if they ask.

Am I a organ donor? YES, but I don't know what I could give away since for some reason I need a lot of them right now.

Do I feel like I have a responsibility to the donor? NO, cause I know I will treat that heart and liver so good. I didn't go through all of this to mess it up. I will be forever grateful for my new heart and liver.

Thanks to my life coach, and I will put you in my book and pray that one day it will be published and be on OPRAH.... Ok, a girl can wish.... :o)


LOVE,
HONEYBEE

Letter From Judy

My Dear Sweet Girl,
I know these past few months have been so hard. There has been so many things going on. With all the Doctor appointments, the test. Trying to adjust to different medications, and now wearing oxygen at night. You are so amazing. You've let people into your life, and shared your personal feelings. Not everyone would be able to do that. Just know that you have helped people think about their own lives, and what rewarding things they might do in there future.
I will be honest, as a mother I am so scared and worried. I tell myself things will be OK, but the fear of uncertainty slips in. I pray so hard that things will be alright. I know that deep in my heart it will be, but it's that unknown that we fear so much.

I know that Melissa will receive a heart/liver from someone who must be a very special, and loving person. It will be their one last gift to give. I know it will be honored and cherished forever.

I've seen the powers of prayers and how they have worked. So thank you everyone for your love, prayers, and caring thoughts.
Judy

SATURDAY, OCTOBER 04, 2008 12:09 PM, CDT

Good Morning All, My friend Kris brought up a very note worthy topic. Melissa and I had this conversation a couple of months ago, and I thought that we could all mull this around in our heads and search our hearts for our feelings on this topic.. ' How do you feel about somebody having to die for you to live? ' Melissa will write on this after I post on it, and we are looking forward to your comments and feelings. My thoughts: I myself am a organ donor. I feel that donating my organs is a way of leaving part of myself on earth to continue to help someone else. Like maybe, I'm not completely done here. My work of love and compassion can go on. Lots of questions to ponder here? Would we want to meet the family of the donor? Are you grateful for the life of your donor? Are you a donor? What responsibility, if any, do you have to your donor? Ummmm, looking forward to your thought. Terri

Melissa and Brian at Brian's Wedding

Good Afternoon All,
The last 18 hours have been chalked with anxiety. Melissa had talked with the Dr.'s earlier this week and they had told her that calls had been made, but we were still in a holding pattern. Then last night Judy and Melissa received a message on their phone from the Heart Transplant Coordinator at the University of Pittsburg Medical Center. Of course it was too late to call then and we had to wait half the day for the lady to call Melissa back. So the message is inspiring. She has been qualified for Pittsburg. (don't get too excited yet). She will still need to go for testing and then her results will be taken to the committe. (The committe decides) They had called other programs also, so hearing from Mayo/Minesota is not out of the question yet, although Pittsburg comes highly recommended. We are still hoping to get a call from Mayo, but this is an exciting start. Melissa is in good spirits, just very tired with all of the stress going on. She will write when we have more news. Keep the prayers coming and maybe an extra one for Mayo to call. Thank you for all of your kind words and love that you all have sent through this site, we can't say it enough how much it means to all of us. Terri

Melissa,

Thank you so much for your honesty and courage to share your sad thoughts with all of us. We would all be lying if we said that the the thought of your death hadn't crossed our minds. It sounds like you are getting a great deal of clarity, something that most of us don't get to do. I applaud you for venturing into unsettled waters to come face to face with your fears. It feels important to me that you know that your life is worth something, and that all you've done matters. Thank you for giving us the chance to face our fears too. You are amazing, brave and inspirational. I think in your next entry in the journal you might want to answer all the questions from this one. Like........What thoughts do you want to be rembered by? What flowers do you want at your grave? What memories are important to you? What is the reason you are going back to church? What do you believe? What lesson are you teaching all of us. Maybe, what do you want us to get? I love you so much, my heart is aching just thinking of all you are going through. Keep moving through it. T

My Sad Day

I wondered all day what makes a person think the things they do? All day I had a feeling that this is the week where I am going to find out where I go for my transplants. Am I ready to pack up my cloths and pictures to take with me? How is it going to be living somewhere else away from my family and friends, when now is the time I am going to need them the most in my life.. Did I make this all happen to me in some way? Do I really have to make such a life decision? A decision that could cost me my own life? If I was getting married I could always get a divorce. :o) I Cant really give a heart back cause it decided it didn't want to work in my body. Why does a person wonder what flowers people will leave at there grave site? Am I so focused on my funeral arrangments that I can't think about what it will be like not having fluid on me, and feeling better. Will the last person I laughed with be able to remember that moment forever? Did I start going back to church cause I am scared of dieing? Or do I really need to be close to God, cause I am in his hands when it comes right down to it. I will be brutely honest here, my heart aches of all the fears, sadness, hopes and the "what if's?" Did God just send me down here for a short while to teach you all a lesson in life? That is to love your own life cause you never know what tomorrow brings. I was sick to my stomach all day and I felt at any moment like I might throw up. If I do die don't focus on my death. I want you to think about all the good I have brought to your life. To be gratful for one thing each day that you did. Why is it that people tell you what they mean to them at their funeral but not face to face or in a letter. I hope I changed your life in some way. You have made me wh o I am today because of you....."ALL OF YOU"

Melissa

Hello Everyone,
I just wanted to give a quick update on me. Its been a couple of weeks since I have been to the doctors and been taking my life day by day. I have NOT heard anything from them on where I will be having my heart/liver transplant. I promise I will let everyone know as soon as I find out. My San Diego trip was one of the best vacations I have ever been on. The wedding I went to was not only a blast but has to go down as the wedding of the century.... "Well, in my book that is" Now getting ready for my MADONNA Concert on November 4, in San Diego, California. Thank you everyone for your prayers and who check this daily. To the people I have never met if you want to write in my guest book please do so. The comments and prayers are what keeps me going. Thank u everyone

love,
Honeybee

---

Melissa on the Beach in San Diego

Melissa on the Beach in San Diego

Hello Friends,

Yesterday was the appointment at the Mayo Clinic to receive all of the news about the Liver and moving forward with the Heart Transplant. The mood was mostly good on the drive in. Our first appointment was with Dr. Steidley, the heart doc. While we were waiting we all placed our bets on what the outcome was going to be. Melissa said, she'll need a heart/liver transplant and she'll need to do the medication again. Judy said, praying for better liver results, but she'll need to do the medicine again. I said I thought she would need the medicine again, but that the liver would be better. Dr. Steidley did some vitals and small talk, Melissa gave him her daily weight chart. She weighed 105 today. Her blood pressure was 88/52. She is pretty full of fluid. They talked about taking another Zaroxolyn today to pull some fluid off. He also changed her Lisonpryl to 5 instead of 10, hoping to increase her blood pressure and give her more of a pump to get fluid off. He is adding a medicine called Rivatio, that is generic for Viagra. (Yes, of course we asked......it will not do the same thing to her as it does a man. It was first used for Pulmonary Hypertension Patients to pull of fluid, then they found the wonderful side effect for men) Then Dr. Steidley got right to the results. Melissa's liver was indeed worse than two years ago, it is already showing signs of cirrhosis. She needs a heart/liver transplant. He assured us that the outcomes for heart/liver are the same as for just a heart. Here is the bad part. They have not done one of these here, so Dr. Steidley will check Melissa insurance, and then choose from there which centers do Adult/Pediatric Congential Heart/Liver transplants. Phew!!!! This floored us. We were all teary eyed and very anxious by now. He gave us the straight news about how difficult Melissa's case is. We didn't leave his office feeling very good. For now, change medicine and wait for a center to accept her. We went to the waiting room and mostly cried. We had about 30 minutes until the Liver guy. (Vomiting came to mind) We talked about what centers would be best for our family. Mayo Clinic in Rochester and UCLA in California. (That is what we are praying for now) Melissa's dad lives in Minnesota and California is close. When we get to Dr. Aqel, he gives us a bit more hope. If Melissa didn't need a heart transplant her liver would probably serve her well for years to come. There are 4 things that lead to the death of a liver. Medication that is filtered through the liver, alcohol, weight gain and here is the big one.....surgery. Melissa will need a liver that works at full capacity for her heart transplant, that is why they are opting for both. The transplant would put to much stress on the one that is currently working at about 30%. If the liver fails, the heart will fail too. He told us that the liver is the last thing to worry about now. She needs both and he can't imagine anyone turning her down. She is young, she is excellent with her care and has a very strong supportive family. HELL YA!!!! So now we are waiting for them to call and say someone is interested in taking her case and then she will have to go there to interview and probably be poked some more. I will wait to write what that will entail after we know where. Every center is different as to how near they need to be and for how long. Oh yeah, she will not have to do the medicine for the liver now. But, if the center who takes her wants her too, we will re-visit this option at that time.

I already have my fund raising hat on. I'll be letting everyone know about that too.
Keep sending great vibes to Melissa, I am still looking for more pictures to put on here. So feel free to send me some. Terri

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

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

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!!

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....

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 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.

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).

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.

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.