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