I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Tuesday, December 4, 2007

Pittsburgh!!

We're here~ Pittsburgh is a BIG place.....But thanks to GPS Bryan is able to find his way around. Yesterday was exhausting........but really good. I did the lung function test, the 6 minute walk test, a lot of bloodwork and we had a long meeting/orientation with the pre-trasplant coordinator. I learned a few things I didn't know....I am confident that I am at the right place and they will transplant me. They said they did 15 lung transplants last month & the average wait for lungs is 16 days. The longest she knew someone waited was for 6 months. So I could possibly get my new lungs for Christmas! I have to get ready to leave for more testing...I will post again later. I found out at the Dr. Appt on Friday that my carbon dioxide levels were up around 120...normal is under 44. I became very sick and very fast. This video demonstrates the pain and misery I was in.....I was dying and Bryan was right there by my side! There is no sound...be grateful, it would be even more devistating! He whispered to me how much he loves me and was sorry I was in so much pain.....
video

PLEASE READ THE FOLLOWING REGARDING SOME DETAILS OF MY TRANSPLANT!We are hoping for a chance for Jamie to have a new breath of fresh air! We are all working in the hopes that she will live a longer, more fuller life with a new pair of lungs. We need all the support we can get from family, friends and her local community of Blackfoot where she has lived most her life. She has helped others with Cystic Fibrosis for 5 years fighting for a chance to find a cure. Her Team 'JamieBug' has raised over $8,000.00 in donations to the Cystic Fibrosis Foundation by participating in the Nation Wide fundraiser 'Great Strides to find a Cure for CF'. Now she needs our help more then ever. It will be a race against the clock with her health and trying to find a transplant hospital that will take her. Email her fundraising committee at hope4lungs@hotmail.com

******UPDATE***************************

Jamie went to Pittsburgh for pre-transplant testing with the plan of returning home that same week.....she made it through all the tests and on the day of the last appointment with the Doctor, her health took a turn for the worse & she was unable to maintain oxygen/carbon dioxide levels. She was placed on a ventilater.......Bryan thought her hopes for a transplant were gone and was afraid he would have to bring Jamie home only to bury her. The surgical team's hearts were touched by God and they worked into the night to get her on the list. She was listed the following morning, December 7th. It can take months for lungs to be matched, esspecially since she was so small the doctors said they would need children's lungs which are more rare. It was difficult for Bryan & others to see Jamie sedated on the vent, but it was better than the misery she was in previous. This is when the rest of the 'Miracle from God' continues.....I say continue because Jamie making it to Pittsburgh at the exact time she did saved her life. Had Jamie been home when her health crashed, Pocatello couldn't help her and University of Utah had already rejected her, she would have just died..... So to continue, she was on the list only 2 days before lungs were found for her & by the 3rd day the surgeons had them inside her & in recovery. The details following this are below.


**TheStory*******************************************************
Hey Everybody!!!!I went to Pittsburgh for my pre-transplant visits and was fillin' so tired and couldn't rest at night at all. I went to all my appointments Mon. - Thurs., but at the last appointment Thursday(which was at the CF clinic at Pittsburgh), Dr. Pilewski wanted to check my blood gas levels(oxygen, and carbon dioxide) and my veins wouldn't cooperate. I was feelin' worse than ever. The Doc decided to put me in the hospital, but I had to wait for a bed. About 5:00 I was admitted to the hospital. Bryan and I spent the first night and I guess I had a really bad night because the next morning the doc admitted me to ICU and put me on a ventilator, feeding tube and cleaned out my lungs with a vacuum. I was deep asleep at last. I needed the rest.
They were going to do a clean out with antibiotics and get my blood gases doing better.
Mean while the transplant team working with my coordinator at the hospital felt they needed to rush me on the list for a lung so Friday night I was listed, thanks to my coordinator staying late and making it happen. I didn't know a thing because I had been sleeping with sedation since Friday morning. The ICU took good care of me . My mom decided to go home on her scheduled flight Sunday and return in the middle of the week figuring I wouldn't get lungs for a while due to my small size. Bryan's mom, Sister Cindy and 3 yr old Page brought our car from Idaho. So they were here about the time my mom left. Course this happened "while I was sleeping".
Just about the time my mom pick up her bags after arriving at the Idaho Falls Airport, Bryan got the call that Lungs had been offered to me and the surgeons were going to go check out the condition of them and I was going to be prepped to recieve them if they were good. The family were all notified and the excitement began. I was asleep and had no idea all this was taking place, so everyone was so excited to know about my reaction when I found out I got lungs. It Happened!!!!!!!
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Update: 12/11/07
Hi! Jamie's not using her new lungs yet but getting ready. Tomorrow the doc are going to start getting her ready to completely wake up. Jamie's a little more responsive and she's doing great. She can make gestures and see us, but still has a ventilator on so she isn't talking yet. She wanted her glasses when we visited today, so she's awake enough to interact. What a trooper!!! Cris Peery(Mom)
*12/11/07**********************************************
Update
Jamie is doing good. She has starting writing messages on a clipboard. She's on a lot of sedative pain medicine, but is able to tell everyone she loves you all and she thought Gatorade sounded good. She won't be able to have any food or water until they can remove the tubes she has down her throat. She wanted some earplugs so she didn't have listen to all the alarms in other rooms. She looks great for all she's got going so pray for her, it's working. She understands she has new lungs today.
Cris Peery(mom)
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Wednesday 12/12/07 Update
Jamie went to surgery to close up the remaining incisions and did great. The head surgeon said the new lungs were doing great and checked the size fit after the swelling went down. She's doing great and is now all stitched back together. Tomorrow the nurse is going to try to get her to breathe without the ventilator and move around some. Today Jamie's just resting.
Cris Peery(mom)
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12/12/07 Update
We spent a short time with Jamie tonight as she was very tired from the surgery and needed some rest. She gets very excited when she has visitors but it is very exhausting for her to try and communicate. She has an unbelievable drive to get well and move into the next phase of her life. The staff at this hospital has been amazing and we are thankful that they accepted Jamie and worked so hard to find the new lungs she needed. We hope to post some pictures soon. Watch for a picture of Bryan and Bill. His wife received a heart transplant at the same time Jamie got her lungs and he has become very close to our family. You can also send an e-card to Jamie at the hospital. login to https://ecards.upmc.com you will have to scroll down and select Presbyterian Hospital. As Jamie will changing rooms in the next few days, there is no need to list a room number, it will still get to her. I know in a few days she will really appreciate hearing from all of you. Again thanks for all your love and support and especially your prayers. God has heard you and is giving us all a Christmas miracle.
Terri-mother-in-law
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12/13/07 Update
Things went well today. Jamie's working really hard to learn to use her new lungs. She's tried them out and she may get off the ventilator tomorrow. She's looking great. Her fingernails are pink instead of blue for the first time that I can remember. The ICU nurses are experienced in lung transplant recovery and say Jamie's right on track with her recovery. She' not out of bed yet, but it will be soon.
Cris Peery(Mom)
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Update 12/14/07
Jamie had a very hard day. She is tired of the breathing tube down her throat and wants to get up and walk down the hall. She's having a hard time understanding that she has tubes, hoses, monitors, leg massage, IV's and about a million other things hooked to her. She's on quite a bit of medicine and things don't make much sense to her right now. She is doing well though. She sat up in the chair last night and breezed through her breathing trials. She is breathing on her own with the assistance of the by-pap machine. It's great to see her oxygen stats at a 100% and her heart beat at 85 to 90 beats per minute.Her skin is so pink and her eyes brighter than they've been for awhile. The nurses are proud of her and always comment on how much she fights through things that are hard. What a trooper. I love her so much.
Cris Peery(Mom)******************************************************

12/15/07 Important update!!!
Hey!
Jamie got off the Ventilator and is sitting up in a chair by her bed!! She is drinking a little water and trying to talk(her voice is gone until she gets it back from having a tube down her throat)and get us to go to the vending machine and get her something to eat. She is on a feeding tube and feels really hungry. She is still assisted by a by-pap machine until she learns to breathe deep enough. The ICU nurse said CF kids have a hard time breathing deep enough so they kinda have to learn to use their new lungs and breathe deep.
She is pretty weak but was really irritated we wouldn't let her walk down the hall. She's spunky.
Things went well today.God blesses her every day.
Cris Peery (It's late so I'll post pictures tomorrow.)
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12/16/07 A good Day
Jamie Kinda woke up today and has done amazing with her breathing exercises and coughing. She wants everyone to know she's hungry! She's starting to use her lungs better. Some of the pain meds were making her too sleepy so when the doc changed them and gave her something to stop the effects of the other pain killers, she was alot more alert. They are going to work with her another day or so in ICU then they'll move her over to the next floor so she can eat and move around more. Thanks for your prayers and support.
Doug and I may come back to Idaho tomorrow if she continues to do good. Bryan of course will stay. It's really snowing here today, and a frigid cold wind.
Cris Peery(mom)
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12/17/07
She's So00 Much better today. She has her fine motor skills back and got a good nights sleep. She is still on the by-pap when she sleeps but really wakes up and is aware. Her lungs still need some time for her and them to get together on breathing, but she makes progress each day. I have pictures today.... enjoy...
Mom

I'm out of the ICU 12-19-07
Jamie was moved out of the ICU tday and got a blue Gatorade! She actually talked to us on the phone and seemed to be doing great as far as feeling good. The pain killers make her a little groggy but she can kinda whisper with her voice. We called about 5 pm and they had just moved her to the 9th floor which is a regular floor. She wanted to me to tell everyone THANKS FOR ALL THE MONEY AND PRAYER AND CONCERN. She is so grateful for the Love of a community that helped save her life. She loves you all. Your prayers help her every day. She's our Christmas miracle. No gift could have been greater.
Cris Peery

Bryan called today so excited for Jamie. She had enough tubes and stuff removed so she could take a walk down a hall. She's still in one of those crazy gowns the hospital makes their patients wear. She did fine though. She also had her first meal today. She had a cheese sandwich and some soup.
Her lungs are working better for her and she is breathing almost on her own. She's still on alittle oxygen but slowly getting more strength to breathe on her own. Her voice is slowly returning today and she can talk soft now with a few squeaks once in a while. Today is a great day, our prayers continue to be answered.
The Outback restaurant luncheon on Tuesday was a great success. We sold around 250 tickets and the OutBack gave all the proceeds, tips to Jamie. They provided the food for free. I can't believe such wonderful people are all around us to help those in need. We truely live in a great place.
Cris Peery
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12/22/07 (UPDATE) BACK TO THE ICU
Jamie has had some problems today and had to go back to ICU. She is still having problems breathing deep enough to get all the CO2 gas out. She's doing better tonight and is breathing better. She needed to have some extra care so they're going to leave her in ICU a couple more days. I'm going to try to post some more pictures Bryan is e-mailing me.
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Update 12/27/07
Jamie is having some bowel pain this week and the docs are trying to get it moving again. She is also having some lung swelling which is common and they are trying to change around the drugs she's taking to see if another reciepe will work better. This is common in most transplants due to each body responding differently to each drug. She's still in ICU and they are watching her closely to see if these new drugs help her feel alittle better. Byan is doing ok. What a trooper. He never complains and spends hours at her bedside. His mom flew there tuesday and I'm sure it helps to have her there. Things are going slow but she's doing ok and has had no big complications.She still needs all the prayers we can give her. She needs strength to carry on. Thanks for all you all do, we are so grateful.
Cris Peery
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12/29/07
Jamie's back sitting up and getting some nutrition today. She has had a lot of the swelling go down that was causing trouble. She is feeling a lot better since her bowels are behaving. She is slowing getting off so much oxygen and starting to do better breathing on her own. Things are going better today and she had a good day. She had lots of visitors, grandma & grandpa, Bryans sisters and mom. A Very Good day indeed.
Bryan promises pictures tomorrow.
Cris Peery
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12/30/07
Jamie has had a good couple of days. She is in really good spirits today. My sisters and I painted her toe nails bright green which she is really proud of, she shows them off to everyone that comes in. She is practicing breathing with out the ventilator and did 5 hours yesterday and 7 hours today on her own! The swelling in her hands has gone down completely, a good sign that the new mix of drugs is working well for her. The CF doctor visited her today and said she will probably be able to leave the ICU in three days. Jamie was really excited about that and is working hard to reach that goal. She really wants to eat some food, and was craving something from Rupe's. She is working hard but keeps reminding herself to take everything one day at a time. We are all so proud of her.
Sindy -Bryan's Sister
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12/31/07
Happy new year to everyone. Bryan and Jamie wish you all the best for the new year. They are looking forward to all the new experiences they will be enjoying this year. Jamie is moving forward in her recovery. She had the last chest tube removed yesterday and her doctor is hoping she will be out of the ICU in just a few short days. She was so happy to have the surprise visitors in the last few days. She has spent alot of time with her grandparents and expressing her love and appreciation to everyone. Her spirits were lifted to new heights when they arrived and she has started to work harder and looking toward her furture. She has even made a date with her grandfather to go to the last chance prom in June and he will get the first dance with her. Bryan's sisters, Sindy, Amanda and Jennifer flew out on a whim and spent a day with Jamie. She laughed and giggled with them and it was just the right medicine for her spirits. They spent several hours with her and I am sure the ICU wondered if they were having a party or what. They also spent some quality time with Bryan and saw some sights of the city. It was really good for Bryan to spend some time with his sisters and not worry about Jamie as her grandparents sat with her. Bryan now is sick and has been avoiding Jamie so that she does not get it and that has been hard, but he is taking it easy and should be up and running soon. The cards and letters have been a big boost for both of them and we encourage you to keep sending them. As soon as Bryan is feeling better we will get more pictures posted, maybe even Jamie's cute green toenails. Bryan and Jamie send their love and deep appreciation to all and hope to see you in a few months.
Terri- Bryan's mom

Update: Another Baby Step
Jamie is doing well tonight. They removed another IV and changing the line in her neck to a pic line which will be more comfortable for her. She spent 7 hours today off the vent and is working hard on her breathing. She is being moved to another CT-ICU unit which is one step closer to being moved out to a regular room. She was happy to see her family and visit for a while. She is almost able to get back in bed from the chair by herself. She has gotten rid of almost all the water retention and looks alot better with great color. Jamie loves getting your cards and letters. In fact the nurse told her how lucky she is to have so much support from her family and friends, not all patients have that and it has been a great benefit to Jamie to feel of your love and concern.
1/1/08
It is a new year and a new start for Jamie. She is in great spirits today and feeling very good. She has very little pain and is working at getting off the vent. She had her hair washed with "shampoo and water" and even got to blow dry it and stye it. That made her feel really good. She was sitting up and painting her fingernails when we left this afternoon. She is hoping to be out of ICU by the end of the week and can spend more time with Bryan that way. Dr. Mcurry came in and told us he is very pleased with her progress and she is headed in the right direction. That was really good to hear. She has been watching movies on her DVD player and listening to some of her CD's which are all good signs.
Its a new year and Jamie is going to make it the best year ever!
She is getting stronger everyday, today she weaned off of the ventilator for 10 hrs and they think that she will be back upstairs by the weekend! She spent the day painting her fingernails and writing notes. The doctor is going to do a swallow test tomorrow and then she can probably start eating again, she is very confident right now and has a positive outlook for this week. To everyone who sent us cards and gifts thank you very much! I am sorry if we are not able to contact everyone and thank you in person, your cards encourage Jamie everyday to get stronger and work harder. We love everyone and please continue to pray for Jamie and her doctors and for our other friends fighting CF.
Bryan

1/4/08
What a difference a day makes. Jamie has been making great progress. She is off the vent now and has been up for a walk this morning. She is getting ready to leave the ICU and going up stairs to a regular room. She will get to start eating also today. she had a red popsicle yesterday and that tasted really good. The best news is the changed her trach tube that allows her now to talk. The nurses said that most patients have a hard time adjusting to talking and usually fight it, but you all know Jamie and she is talking up a storm. She has a strong voice and is so glad to communicate without having to write it down. She has set a goal to be out of the hospital by the 21st, in time for Bryan's birthday and she is really pushing herself to reach that goal. She said last night that it is getting alot easier to breath with her new lungs and now she doesn't have to think about it as much. Especially while she is talking, she is able to breath more natural and said she can't remember breathing this easy and this deep. Her grandma Christensen said she has seen great improvement in the past week and what a blessing it has been to have her and grandpa spend the past week here. Jamie said she need the visitors to get her going and remind her to keep working.

Nikkii and I (Cris) got here on tuesday morning and have been with Jamie every day so far. Nikki has been staying at the hospital with Jae so Bryan can get some real rest. The cot he's sleeping on is about 6" to short and about 12" to narrow. He's a trooper though and is going to stay with her some more.

Jamie is so much better. Her cute witty personality is back and she is wanting to scrap book pages for everyone. She is really, really thin, but her appetite is getting better and she is again able to amaze me. She may be able to be moved to the family house next week if she continues to do good. It looks like right now that we are getting the lungs through the rejection stage and hope the anti-rejection drugs continue to work as good as they do now with little side affects.
Love all the cards and Letters. You all are so kind. We can never repay all kindness and love you have given.
Cris


11 comments:

Connie said...

Hi Jamie,
What did we do before computers and GPS?
Glad to hear things are looking good for you.
Sending you all the positive vibes I can muster up.
Connie pmc

Rebecca said...

Jamie,
I heard this morning that you are on the operating table getting your new lungs. I was so happy to hear that! I hope everything goes well. I am spreading the good news and keeping you in my prayers. Love, Rebecca

Alysia Cook said...

Hooray, I saw on the news today that you just got out of surgery for some new lungs. Congratulations!!!!! I am so happy for you and your family. I love ya and pray for a speedy recovery. Love Alysia

iceshycaygekids said...

I love you girl! I am so happy for you! I have had grandma keep me updated all day. You are in our prayers and in our hearts! We love you so much and can't wait to hear more!
Candi

Red said...

Hey Jamie and Bryan!

God Bless you both for getting this far in your incredible journey! Uncle Kris and I have been praying for you. We are thrilled beyond words that this blessing happened for you so fast. Uncle Kris was astonished!

We Love You Both

I'd say, What a Merry Christmas!!

Jeremy Ropp said...

Hey Bryan and Jamie,
I just wanted to let you guys know I was thinking about you. Hope everything is going well. Keep in touch guys, and looking forward to hearing more. My prayers are with you.

Jer

susanlafaele said...

Dear Jamie & Bryan,

What an inspiration you are to all of us. We admire your courage and love. Please know that our thoughts and prayers are with you and that we will anxiously await seeing you again in Idaho. Please give all our love to your family and let them know that we miss them and hope they are doing well.

Love,

Susan & Eti

Ryker said...

Hey guys! I just heard. I'm so happy that everything is going great! Haven't talked to you guys forever. Keep in touch let's get together when you guys get back and settled!!

geeket said...

I am so inspired by you and Bryan! What an amazing couple. My thoughts and prayers are with you and know that you will be up and around quickly. Please know that you are loved and we are keeping up with your quick recovery!! Congratualtions and be tough!!

Cheryl said...

Jamie!!

I just found out about your trip to Pittsburgh and my mom sent me the link to this blog. I am so happy for you and I can't stop crying!

Please know that I am praying for your recovery and excited that you will have a whole new healthy life! You deserve it, Jamie. You sooooo deserve this. Hooray!!

Mikki said...

Jamie,
We are so excited for you. We keep checking on your updates everyday. You are in our prayers constantly! We love you and care about you!!

(The Pearson's)
Danie, Susan, & Mikki

Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen