Saturday, June 28, 2008

Conversations with my mom...

I talked to my mom on the phone this morning for a good bit. She sounds wonderful. I know she is just really glad to be home and in her own space. On Friday, she went to the beauty shop and had her hair washed (yes...like a little old lady!) and was even able to go over to the Hickman's house and sit out on their pool deck for a while. Sunshine is certainly good for the soul!

The blood thinner is a shot in the stomach. I thought it was another pill to take. So much that I know! Mom is trying to get those on an 8-8 schedule, so she doesn't have to get up really early to give herself a shot. I was actually surprised when I called today (around 9:00 Arkansas time)and she was sitting in the living room; I really thought she would be in the bed so she could keep her feet up more. She even went in and checked her own email AND this blog today! Go mom!!! She hasn't been on the computer since she broke her elbow Memorial Day weekend.

Sooo...the question I had for my mom today was, "What happens if you the blockage in your lungs shows up that it can be fixed with surgery? Does that mean the PH is fixed, too?" Her understanding (I didn't ask her if I could share this, so I really hope it's okay!) is that right now, it looks as though the PH is secondary to whatever is causing this blockage in her lungs. If they can figure out what is causing the blockage and if that can be fixed with surgery, that her PH would be no more.

Will you guys pray that is the case??? Wouldn't that be wonderful?!?!?!

On another note...we've had several people tell us that they've wanted to leave comments but couldn't figure out how/what to do, etc. Basically, all you have to do is click where it says comments, write what you want to write, then fill out all the other info. I am pretty sure you have to give your email address and you might even have to create a log-in name the first time, but that's it. Oh, it might ask you to retype some numbers and letters, too. I think that is just supposed to reduce the spam generated on the site. We don't really care if you are reading it and not leaving a comment...it's just fun to know sometimes. Also, when mom and dad were in Nashville, I printed off all the comments and faxed them to my dad so they both could read all the encouraging notes. They were moved to tears!!

Thursday, June 26, 2008

Going Home

I just talked to dad about 5 minutes ago, and they are on their way home from Nashville.

Mom is doing really well. She has lost 20 POUNDS of fluid since going into the hospital two and a half weeks ago. Through the different testing done while she was in the hospital, some blockage was found in her lungs. The doctor put her on a blood thinner for now, and has sent the test results to a lab in San Diego. There is a possibility that this issue can be fixed with surgery, but we won't know anything further until the results come back from the lab.

Please continue to pray. I know my mom is so glad to be going home!

Tuesday, June 24, 2008

Thank Yous

I don't know if some of these people will ever read this blog, but I just want to say thank you to the following people. I know my parent's feel the same way, but they didn't ask me to do this. This is just from me. I may post thank-yous periodically through this journey...these are just fresh on my mind right now!

*Ginger and Amy-you two are so sweet. My mom loves your families dearly and I was so shocked to see your comments on my personal blog! Thanks for taking the time to check on us. I'm glad to have personal contact with you again.

*Joe-thanks for going to see mom and dad this weekend. My mom thinks so much of you. I know she was glad to have a visitor. Thanks for the idea to add the PH Association link. If you think of anything else, let me know.

*Aunt Judy-I just can't say enough. I know you said it was an honor for you to be with my mom, but I'm so grateful. I couldn't ask for a better aunt.

*Aunt Marva-You think of all the things we need to do and do them. Thanks for supporting my dad. Same to you...I couldn't ask for a better aunt.

*Dr. Coker-You are the one who initially found the PH. Thanks for taking such great care of my mom the last four years and treating her like your own mother. She loves you dearly and trusts your care.

*Dr. Wright-Thanks for always being proactive in your care for my mother. We are grateful.

*Amanda C.-I'm glad you found us through Stephanie. Thanks for commenting and for passing the word on to your parents. We love your family so much and know you all are praying people.

*Everyone who visited my mom at Baptist-hospitals are not fun places, especially when someone is in CCU. Thanks for driving and taking time out to brighten my mom's spirits.

*Emily-Thanks for caring enough to call my dad and email me. I'm so thankful for the wonderful support system my mom has through the Memphis group. So encouraging.

*Sue Moore-You are so encouraging! If anyone can relate to the "unknown" I know it's your family. I think every time I see my parents, they tell me more of "your story" and it's evident they are encouraged by your faith and the miracle God worked in your granddaughter's life! We know God is big because He has used families like you to show us.

Again, I know I'm leaving people out and that there will be more to come! We love each of you and are thankful for your encouragement!

Monday, June 23, 2008

Helpful Hint...

I also put mom's contact info in the sidebar of this web-page, so the info is always at your fingertips!

New Info

Here is the latest news on my mom...PLEASE keep the prayers coming!

Apparently, there are three kinds of PH. The only way to determine what kind of PH my mom has is to do a lung biopsy. Dr. Robbins said at this stage, a lung biopsy is too risky. After reviewing all the test results from Friday, Dr. Robbins decided that he isn't going to pursue changing her medicine to Flolan. From his observation, changing the medicine wouldn't make that much of a difference. The transplant IS the next step. A transplant nurse will come to talk to them soon.

Today mom was able to walk to the nurses station and back with the help of my dad...the furthest distance she she has walked in two weeks.

If you would like to send my mom a card, please send it to the following address:



Vanderbilt Hospital
1211 Medical Center Dr.
Nashville, TN 37232

Please put the following in the lower left-hand corner:


PT Janice Henderson
Room 7010


I know she would LOVE to hear from ANYONE! My dad wrote down everyone's name who has left a comment on this blog so he could go back and tell my mom. I'm probably going to Nashville this weekend, so I will print off any comments and take them so mom can read them. I know she will be so encouraged by your words!



Saturday, June 21, 2008

Exciting!!!!

I checked my email just a few minutes ago, and I had an email FROM MY MOM!!!

She gave me a room number and a phone number for me to call her, so I IMMEDIATELY grabbed the phone!! Besides our 30 second conversation last Wednesday evening, today was the first time I've been able to talk to her in two weeks! I was excited to the point of tears!!!

She got moved into a regular room as of about 6:00 this morning. She said that yesterday was very exhausting; she went through a BUNCH of testing that she's never had to do before. She also said that she feels better than she has in a long time--she actually feels like getting up and walking around a bit and eating. She hasn't had an appetite in weeks. Talking on the phone does wear her out, so our phone conversation wasn't very long.

Some things of note:

**Dr. Robbins is the lead research doctor of PH. I thought he was the lead research transplant doctor. He is actually gone this weekend for the PH convention.

**They do want to switch her medicine from Remodulin to Flolan to see how it works first. The transplant is not off the table at this point, they just have to exhaust every other option first. Her body also has to be in tip-top shape in order to have the transplant.

**Mom's words to me were, "Leah, I just feel so strongly that God needed me to go through everything in the last two weeks to get me to this doctor." We talked about how thankful we are that Dr. Wright, Dr. Coker, Dr. Hundley, and Dr. Squires were proactive in their care for her. What a blessing.

**It looks as though Mom will still be at Vanderbilt for a while. She's totally okay with that because she knows she's in good hands and getting the best care.

**She has a laptop in her room, so I told her that when she feels like it, we'll set her up as an administrator on this web-site, so you guys can hear from her yourself!! YAY!!!

Friday, June 20, 2008

Latest News

Dad just called again, and everything is going well.

Mom has been going through quite a bit of testing today, a lot of the same tests she had at Baptist, but of course, all hospitals want their own readings. Mom's new doctor's name is Ivan Robbins, and he is the leading research doctor at Vanderbilt. She really liked him a lot and feels as though she is in good hands. Right now, he wants to change her medicine from Remodulin to Flolan. Dr. Robbin's hasn't spoken of the transplant yet, but I don't think it's off the table. I think they just want to see what the Flolan will do first.

I think I said in my post last night that the Remodulin goes directly into her veins. After reading a little about the drugs, I learned that Remodulin goes from a catheter directly into the skin and Flolan goes into the vein. Another thing I want to note is that after reading about all the drugs used to treat PPH, besides Flolan, my mom has been on all of them. I'm pretty sure that even right now, Treclear and Revatio are part of her treatment. (I may have to be corrected on that, but I'm 99.9% sure that's accurate.)

Right now, she is in an ICU unit, but will be moved to a regular room on the Pulmonary floor sometime soon, since she is not considered critical at this time. (That's a huge praise!) Her oxygen level is lower-about 68-which is what it is when she is at home. Also, she isn't wearing the mask right now, just the tube through her nose-which is another huge praise! She still has some fluid, and they are working to get that off as well.

Keep the prayers coming!

Made It To Vanderbilt

Dad called around 8:00 this morning to say that mom made it to Vanderbilt around 10:30 last night. Everything is going smoothly-no big news, really.

Any time she is seen by doctors, it's a team of doctors, and will probably be a different team each time. Last night, one team came in and asked she and my dad a bunch of family history questions.

Aunt Judy flew with mom, so she is there, too. Dad and Aunt Judy stayed in the room with her last night and today daddy is going to try to find a hotel to stay in, so he can get some rest at night.

That's about all I know for now...still not much!

Thursday, June 19, 2008

First Post

Well, I guess I'm the designated PR person for the family! My dad has had so many phone calls, he can't answer all of them, so he is handing out my email so I can keep folks up-to-date with what is going on with my mom.

I'm glad to keep everyone informed on our situation but decided that rather than having write the same message over and over again in email, I could set up a website, write it all here once, and then you guys could come and check whenever it's convenient.

For those of you who don't know my mom's story, I'll give you the short version...

She was diagnosed with PPH about four years ago, all beginning with a battle of bronchitis that turned in to pneumonia. (The disease is also linked with the drug fen-phen, but this is not my mom's case. Her doctors believe that it's genetic.) Mom has gone through several different drug treatments in the last few years, the latest being a mainline pump that she had inserted in November 2006.

Last Monday, mom was given the news that her "pump" medicine isn't working anymore, and the next step is a heart AND double lung transplant. She has been in CCU at Baptist Hospital in Little Rock for about 10 days and in the air on her way to Vanderbilt as we speak.

Our family is hopeful, but we also know that the final outcome is in God's hands. We serve a BIG God who is bigger than disease, bigger than medical expenses, and bigger than life itself. God works all things together for good (Romans 8:28) and will get the honor and glory from this, no matter the outcome.

The verse at the top of this web page, James 1:2-4 says "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." This is my mom. She has chosen joy in her circumstances, not just now, but from the very beginning of her diagnosis. I remember being on the phone with her after she was diagnosed the summer of 2004 and her words were, "I can't let this bring me down. God has a purpose for my suffering and I'm going to use it for Him." I won't say that my mom has always been happy about being sick or that she's never prayed for God to take this terrible disease away, but even in the midst of her suffering, she has been an encouragement to others.

I will update as much as I can...anytime there is new news to share. You might want to save this website in your favorites, because I probably won't send out an email when I post. Please comment anytime! We will make sure my mom hears your kind thoughts and words. Please keep my family in your prayers! This is a journey...one that will end up victorious one way or another!