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Introduction

Monday, April 30, 2007
Hello! Several people asked me to start a blog so I can keep them informed about my health. So, here we are! This story started In June, 2004 when I was diagnosed with a rare lung disease called Primary Pulmonary Arterial Hypertension or "PH".It is basically high blood pressure in the lungs. This has nothing to do with "normal blood pressure" that you get checked at the doctors office. It's very rare. The latest number I read was approx. 100,000 in the United States. The average life span is 3-5 years after diagnosis. Please go to www.phassociation.org for important information, explanations and exciting advances in PH.
The Ph isn't the problem that I am dealing with right now. I had been losing weight due to the Flolan side effects for quite awhile. Flolan is the medication I take to control some of the symptoms of PH. Flolan is delivered with a pump through a central line that is administered 24 hours a day.The side effects can sometime be rough including lost of appetite and nausea.I lost a significan't amount of weight because of the side effects. But, that weight loss seemed to be getting under control. The current problem started about a month ago. I became unable to eat more than one or two bites and then get very full. If I tried to eat more, I got very nauseated. It has now progressed to the point that I can only eat popscicles and chicken broth. Because of all of this, I am extremely weak, my hair has become really thin and I sleep so much. We've been doing all kinds of tests. It does look like I have a low thyroid and am anemic. But those two things don't explain the eating/vomiting/weight loss problem. I can't start medication for either one until we figure it out. The doctors think the enemia might also be from blood loss but they don't know from where. I had a cat scan done last week that showed no problems. Next Tuesday they are going to scope my esophagus and stomach and do a colonoscopy to try to find some answers.
So many of you have asked what you can do to help. My friends from church have Rod's meals taken care of. I also have a couple of good friends with flexible schedules that are driving me to appointments. At this point, there is really nothing else that I can ask for you to do, physically. What I can ask for are prayers, big time prayers.
The concern and love that has been shown to me is unbelievable and humbling. You have no idea how much I miss all of you, even if it's just e-mails and posting things to my phriends (friends with ph) on the PH website. I will do my best to "blog" so you know what's going on. Right now, please pray for Rod, Nick and Chris. They are so worried. As a mom and a wife, I'm suppose to be calming their worries, not be the cause of them.
"Talk" to you soon.
Annette

11 comments to Introduction:

Sylvia said...

Hi,

We are friend's of Kathie's. Norman worked with her. I also helped with your benefit.

Please know that you are in our thoughts and prayers.

In God's love,

Sylvia & Norman Kempf

Di said...

Annette,
I am thrilled that you started your blog. This is such a great way for your sisters and friends to keep track of you. PLEASE let us know other ways to help you and your family. Of course you know prayers are being sent up daily for you. I pray that you will regain some of your strength so you can start your treatments. We all dream about losing weight.......but never this way. Hugs, diane

Jacqniel said...

So glad you started this! You are in my prayers, and my prayer right now is that they find what is causing your eating problems and get you back on track for your other treatments. Take care and keep on blogging! Hugs, Jacque

Mary Nebe said...

Annette- You are an amazing person. I admire your inner strength and drive to keep a 'good' attitude. Please know you are always in my thoughts and prayers. It was soooo nice when you and Rod dropped by my house the other week. I hope you'll swing by again when you're out for a 'drive'. Just know, I am here for you if ever you need anything...please call!!!!!!
xoxoxoox,
Mary Nebe :)

bethannie said...

Dear Annette,

What a good way to keep us all informed, and for us to keep in touch with you. You are amazing, and you are my hero. I will pray that they find a reason for your newest problem. I know you said you are doing a lot of crossword puzzles. Do you also like jigsaw puzzles? I did a ton of them when I was recovering from my surgery. Great way to keep the mind working! Let us know! Beth Willson

Colleen said...

Dear Annette,
I am so glad you started a blog. We love you so much on the PH boards, and we just want to see you get stronger! You've been in my prayers, and will always be in them, just like everyone else in our little PHamily. God Bless you, and may He make you stronger and healthier!
Love you, my dear PHriend,
Colleen :)

Krista said...

Annette,
I am so pleased that you are doing the "blog" thing. I keep up with Jacque's daily and will add you as well. I am sorry to say that I missed everything you said about your health when you were at my house in April. I guess I was in the kitchen getting dessert ready. I had noticed your weight loss and was thinking that you looked so great. Sorry it has happened in this manner. You have such a wonderful sense of humor and I know that helps with your illness. Keep it up! Thanks for sharing your adventure!
Krista

Neeta & Nityananda said...

Annette:)

We are so glad you started this blog, so we can keep track of you without each one of us troubling you a zillion times a day via telephone calls and e-mails. Keep in mind 'Time is of essence' with this disease. So, hurry and get all the tests done ASAP to find the underlying cause of current problem. Keeping you close in our thoughts and continuing to pray for you and your loved ones! Yes! You are a great lady with admirable virtues, most important ones being your sense of humor, caring and love for other PHriends. We miss your wisdom on PHA's message boards. Please do let us know if there is anything we can do to help. Take care, Hugs.
Your PHriends,
Neeta & Nick

Janet said...

Hi Annette,

I haven't known you for long, but you have made such an impact. What a strong and faithful person you are. You have inspired me with your joy, laughter and wisdom. You and Rod and your sons are in my daily prayers. May the Lord's loving arms enfold you, and may he bring you comfort, peace and joy.

God bless you,
Janet Seelhoff

Rene (vrh) said...

Dear Annette,

I am so glad you are cared for by your loving husband, sons, church family and other caring friends. Most of all, I am comforted that you know God and His love and are trusting in Him. I continue to pray for you and your family, but want to leave you with this special prayer to God the Father through our Lord and Savior Jesus Christ:

Dear Father in Heaven,

I am so thankful I can come to you in prayer knowing that you are a loving and faithful God whose promises always hold true. I pray that You guide her physicians in making the correct decisions for the right diagnosis of what is causing her recent health problems.

I pray for improvement in Annette's health. I pray that Annette is given thyroid medication soon and in the right dosage so her energy level will increase without delay. It would be so pleasing to her and to her family and friends to be able to be more alert and awake with more energy.

I also pray for her spiritual well-being. I know that there is a time for rest and a time for activity and that any rest you give her is a gift to strengthen her in her relationship with you. Remind her that she can lean on you and rely on you to give her your strength any time she asks, for you are always there.

I also pray that Annette's husband and her two sons know the love You have for them and that your loving care of Annette through all that she has gone through and continues to experience is a positive and strong reminder of your presence in their lives. Please continue to watch over this family, dear Lord, and show them that you are there for them and have a hand in everything that affects them. For we know that all things happen for the good of those that love You.

Thank you for filling Annette with such love that she shares it with others without thought for herself or her circumstances. Your warmth shines brightly through Annette even when she is weak. Only You know the true extent of the blessings she has shown to me and to others through her loving concern for all people everywhere, and for her desire and actions to bring pulmonary hypertension to the public through fund raisers (and even this blog she started). Thank you for bringing Annette into our lives and for answering our prayers to strengthen and improve her health.

Amen.

Hugs to you and your family, Annette! Remember God answers the prayers of His children immediately (although it often takes a while for us to actually see the results/answer). Trust in Him. You will be okay.

Love,

Rene (vrh)

nationalitybdate said...

Annette,
It was great seeing you tonight and catching up with all that is going on with you. Know that you, Rod, Nick and Crhis are in my thought and prayers.
You are all very special to us. Take car and I will be in touch. Theresa