Last Post Until Fundraising Is Over

Hi everyone. As you know we hooked up with COTA to fund raise, so they have set up a website for us to use. It is something similar to this, it has photos, blogs, schedule for events and of course donation options. Brie and Lindsay will be working on it this weekend so you can follow her progress. Thanks for following Lindsay's journey with me! She will continue to get better, so tell your friends or Company to log onto the following page. http://cotaforlindsaym.com/

What a Day

I haven't blogged in a few days, so I should probably catch you all up to speed. We moved into the apartment homes on Tuesday and what a relief for Lindsay. We had a small unexpected welcome home dinner. We had several guests and we are only allowed to have 2. Just a few friends of Lindsay's, but we also had our 1st noise complaint and we were not even there for 24 hours. We learned our lesson. Unfortunately Lindsay had a hard time getting to sleep, so we went from the bed to the recliner, back to the bed and then finally the recliner. Since she is not in a hospital bed, it is hard for her to be comfortable because it is still tough for her to lay down flat. I am glad I brought my own pillow because we used every pillow to prop her up. Oh what a night and we didn't get enough or much sleep at all. On top of that we had a busy day with getting medications ready, blood draws, x-rays, viewing the old lungs and then clinic. Clinic is just an appointment to meet with the transplant team to make sure Lindsay is recovering well, (and she is) answer any questions or concerns we have. So far so good besides the dream/hallucinations. They say it is most likely some of the medications and the fact that her body has been through so much. Most of the meds she will be weened off in time and some will go to a lower dose. After we got home, Jared came over to give me the night off so I can go to school and to spend time with his sister. We will have to see if he survives this night and if he will come back. I'm sure he will I just like to give him a hard time. Not much has happened since we discharged, but Lindsay is taking it slow and trying to rest every opportunity she has. If she has nights like she did last night she will be napping a lot. The doctors also want Lindsay to walk around, be active and live a normal life. Of course it will take her time to get back to 100% normal (or better), but it is good for her to get out and go on a walk, or the store.


Lindsay has to wear a mask every where she goes except the home and Dr. offices.
*Thanks to all who have donated. Our family appreciates it! :) *

Pics of Old Lungs *Graphic*

*Right lung is on the left (2 pieces) Left Lung is on the right*

*White coloring is End Stage CF*

*Pore should be a large hole with no mucus surrounding instead of the small holes you see*

The Old Lungs *Graphic*

Lindsay, Amie and I got to see Lindsay's old lungs today. We did not just see them we got to hold them, take pictures with them and kiss them GOODBYE!!!! Not really kiss...but you know what I mean. What an experience that was. I will probably never get the chance to do anything like that in my life again, but it was so nice to see an organ that is inside the human body. It was kind of sad also looking at her poor, unhealthy lungs. In the bottom pictures the lungs have pores with little holes and white 'stuff' surrounding the inside of the pores. Well the 'stuff' is mucus that should not be there in order for the pore to be bigger in order for Lindsay to breathe well. The mucus dries up and hardens making it more impossible to breathe. Now these lungs look like she was a smoker, but it is actually a dye they put on the lungs to preserve them. You all saw a picture of her lungs when they were 1st taken out. Then they were pink and white. Well the white that we saw was considered 'end stage' in a CF lung. You can still see them in these pictures. Who knows how much longer Lindsay would be alive if she still had them. And yes we had to go to the "Gross Room" to view them.

COTA Website Redirected For Now

So I've been told the COTA website (Lindsay's personal page) is not up and running yet, but you can still go onto http://cota.org/ , click 'find a family' and type in her name & state and it should bring you to her page. I apologize about that, but it should be up very soon.

Not Such A Good Night

Lindsay received her transplant 9 days ago! I can't get over how well she is improving. Last night was her first bad night with these new lungs. She was still in pain so she was given some pain meds and then she wasn't able to go to sleep so she was given a sleeping aid. Well it was either the combination of the 2 or the sleeping meds that turned her night into a horrific one. She was having the same dream over and over and it was quite bothersome to her so she stayed awake. It seemed to her that she was beginning to hallucinate because all of her friends were in her room making plans to go places and she tried to talk to some of them but they just ignored her and left. I called her this morning and she was very upset because she was confused and it was frightening to her. I rushed to the hospital to see if I can be of help to her in calming her down. She seemed to be ok besides her feeling alone and confused about these hallucinations. She was able to take a nap while I was there but when she woke up she began to see things that were not even happening. I didn't know how to handle it because I have never seen anyone do this. I wasn't sure if I should play along, or if I should tell her that what she was seeing was not happening. But I didn't want to do that in case I scared her even more. So when she told me some of her friends were in the bathroom I asked her if I should open it to see if they were there. She knew they were not there, but she saw them in the bathroom. Same thing with the T.V. she asked if I had turned the T.V. on, but it was never on. So I just asked her if she wanted me to turn it on for her. She has been off of her pain meds today and switched to Tylenol and she will not be taking a sleeping aid tonight. I hope last night will be the only night she experiences that. She didn't get discharged today because new prescriptions were made today and they are still at the pharmacy and we are waiting on an antibiotic to see if Kaiser is paying for it or Stanford. It mostly likely a go tomorrow. On a good note Lindsay was able to go outside and have a break from her room and all of the nurses. She was finally able to be outside and see the gardens. It was only for 15 minutes but it was nice for her to go outside and be free from her room.


Please NO SMOKING! You can't really tell, but Lindsay is smiling in these photos :)

Walking and Talking

A few of us went to see Lindsay today and she had another busy day. She went on a morning walk all by herself and in the afternoon she walked with a few of her friends. She finally took a shower today and she felt so much better. I think she had a good day also because we meet a new nurse and she was just the coolest but also VERY professional ;) We even snagged a picture of her before she stabbed Lindsay with her insulin! The picture is a little blurry.
Another Dr. came to update us on her discharge and we are still hoping for tomorrow. It could be another day if her new lungs don't expand. The Dr. told us that the lungs will expand but it usually takes patients a few days and some a few weeks. He noticed in her x-rays there is still some spacing that could be filled. He is not concerned because it is not threatening, but he would like to keep her for another day if x-rays are not better tomorrow. So please pray for that.

She has already raise $50 online for fundraising, so keep it up and tell all of your friends!
Hopefully Lindsay will be discharged tomorrow and if so maybe she can blog a bit for you all. Please keep Lindsay in your prayers as the Lord has many plans for her.

"Quit Monkeying Around & Donate" - Jared Mulic

www.cotaforlindsaym.com

Happy Mother's Day

Sorry I didn't Blog yesterday, but I needed rest and a break from it all.
A group of us meet with Children's Organ Transplant Association (COTA) to help us get organized and ready for any fundraising events we will be holding to raise funds to help pay for Lindsay's lung transplant expenses. Out of pocket expenses are estimated to be about $55,000. We have a very ambitious group and creative ideas for events. You can now go online and donate at http://www.cotaforlindsaym.com/ You may also write a check, but it needs to be made out to COTA and in the memo put 'Lindsay M.'
I didn't see Lindsay yesterday, but I spoke with her today and she is still in pain from the chest tubes been taken out since yesterday. The nurses say she should not be experiencing this much pain still. So they may want to keep her an extra day in the hospital and on top of that one of her prescriptions will not be ready until 2pm tomorrow. They will not let her discharge unless she has all of her prescriptions with her. So I will be waiting for a call tomorrow when they are ready and I will shoot up to the hospital to see if they will let her leave or not.
Please pray for Lindsay that the Lord will subside her pain so she can be more comfortable because she has been through so much. She will also need prayers that her body will not reject the lungs and for her to stay healthy because she is more susceptible to infection. But importantly give praise to Him that she is alive & well and that she can live to see her dreams with these new lungs.
I just got a text from Lindsay that she weighs 97 lbs! She went in at 89 lbs. Praise God!

Go Fish

I stayed with Lindsay last night in her hospital room and I now have a better understanding of why people don't like to stay in hospitals! We went to bed kind of late and she woke up twice to cough and at 6 am a nurse came to check her vitals. There must also be something about sleeping in an unfamiliar place that doesn't help either.

Unfortunately, Lindsay's morning x-ray shows she has fluids in her chest, so they will not be taking out the chest tubes until tomorrow :( She didn't get her PICC line either, but she got a Tunnel Venous Catheter instead. It is the same thing except it is put into her chest instead of the arm. A persons body can handle a few PICC's in a life time and Lindsay has already had 4. It eventually damages the vein and is harder to get placed. So the nurse went with the Tunnel Cath instead. We are still on schedule for moving to the apartments on Monday and answer to prayer...it will be covered! We were told at 1st we would have to put down some deposits (cleaning & linens) and pay a daily rate. It would have been anywhere from $15 - $75/day. We were hoping for $15 but as of this morning we received good news that it will be taken care of. We have been praying that the Lord will provide for us and He is doing just so! Lindsay's spirits are high...she is singing, laughing, smiling, planning her future, and she is getting back to her normal self. (Besides when medicated)

Here is the fun stuff...
Since Lindsay has her chest tubes in, she is experiencing a lot of pain. When they are taken out she expects to be fully independent. She has been taking pain meds, but yesterday the nurse decided to 'up' the dose since it wasn't helping much. Her first larger dose was given last night with Sid and I in the room. Although it is not the goal to knock her out, it is to subside the pain. Lindsay spilled water on herself so we changed her and the bedding. I cut her finger nails cause they were a bit long. By this time her meds kicked in. The second we put her back in bed she was out! Sid saw her tongue hanging out of her mouth. It was hilarious! I feel bad that it is comedy to me at her expense, but there is nothing like watching your sister act with heavy medication. Today she was having more pain so she got more pain meds. I broke out the playing cards so I can play because I knew she was going to sleep. But she saw them and wanted to play anyway. I decided on Go Fish because I felt it was the easiest game to play. I wish you were all there to see it! I passed out the cards and she started taking from the pile. She never asked me for any cards she just started taking them. I called her a cheater and she finally realized what she did. She was slurring her words a bit so I laughed as she told me to 'Go Fish' and later in the game she asked for an '8' so I gave it to her and she tried to pair it with an 'Ace.' When I asked her for matches she told me I was evil "taking from a crippled person." By the looks of the pictures I should have won but Lindsay won the game. I have a new camera courtesy to the Allen family, so now I can keep you updated with pictures as well. Enjoy!

*Lindsay took this one of herself*

*Morning Dose*

*Pictures* Some May Be GRAPHIC

I got the okay from Lindsay to post some pictures! I don't have to many but at least you get to see some. Brie has more on her camera, so eventually we will get them up here as soon as we can. 

Lindsay gets her chest tubes out tomorrow and she will be getting a PICC line which is basically a home IV. She will have the PICC for about 2 weeks. Monday we will be the day we most likely move across the street. She went on another walk today and it was a bit longer than the day before.

***OK here are photos of her old lungs. Please turn away if you need*** 

*Pink Respirator* *Cute DO*

                                        *Her Incision Scar*

Moving Forward

Lindsay had a very productive day today. Her pain has subsided immensely and she still is very exhausted. She mentioned she went a on walk that was about 30 feet long. She had to wear her respirator which is pink, but I think she rather have a purple one instead. For lunch Lindsay had...solids! She savored her beef stroganoff and the look on her face when she ate that Oreo brownie was priceless for Jared & Nicole. We were talking about her feelings about the transplant and she is happy she did it. No regrets. Of course she knows it will not be smooth sailing ride because of all of the changes that will be coming her way, but she can't wait. Things she will have to get used to and learn are breathing properly, restrictions for the first few months and new medications. She has been breathing with the top of her lungs and in her shoulder area, but her Physical Therapist wants her to learn to breathe with the lower part of her lungs to get good deep breaths and get the full affect of her "Big Boy Lungs." I just learned that inside joke toady. It is said the donor is a male and while her and her friends were waiting for operation time, Lub said "Now you'll be getting your Big Big Lungs." We have no other information about the donor and we will not know until Lindsay is ready to contact the family. BUT it is up to them to respond.
Another thing she will have to get used to is all of the medication she will have to take. Prior to the lung transplant she had a pretty heavy regime to begin with. Mostly all of the meds she was on before will be non-existent. No more inhalers, breathing machines, oxygen concentrators and no more vest (percussion therapy). Anything related to the lungs will be replaced with meds, but she will have the same meds for the digestive part of the disease. She will be on anti-rejection, anti-infection and supplements. Oh yes I can't forget those enzymes. In essence, Dr's have been telling her she is trading one disease for another one. She still has Cystic Fibrosis because it is in her digestive system as well. I wonder if she can be cured if she got a pancreas transplant!?!? Huh, I should become a Dr. and experiment.
Tomorrow will be a new day as we both get pointers to get us ready for discharge. We are hoping Monday. Lindsay will need to memorize her medication schedule and brush up on her do's and dont's & I will get a tour of the hospital so we know where to bring her for clinic and appointments. I will let you all know how that goes.
Good Night!

Lindsay's Notes to the People

Lindsay wanted me to share with her followers and readers some updates:
*She wants to be off her clear liquid diet cause she needs real food, but unfortunately Doctor's order. They are taking precautions because there is a chance she can aspirate food into her new lungs and that could be fatal. Her meals consist of broth, jello, cranberry & apple juice, and Italian ice. Craig already tried bring Jamba Juice, but it was a no-go.
* As soon as the Dr. brings Lindsay a new/special mask she will be able to exercise by walking the halls. (I assume it is some type of respirator.) She feels weak because she has done no walking.
*Prior to her transplant her lung function was at 27%. You and I would be around 98-100% possibly higher. She won't be able to do the breathing test that measures until a few months but she will be glad to have 50%. I think she will do higher, but she would love to see that # because she has been between 19 and 29% for so long. I don't remember the last time she was above 30. She was off her oxygen today, but later in the afternoon her O2 saturation was fluctuation between 89 and 94. so the nurse decided to put her on 1 liter of O2. Lindsay was bummed because she was trying to go all day without it but the nurse said 1 liter won't set her back to much. You know Lindsay, always trying to be strong and independent.
*The nurse gave her a list of oral medications she will have to memorize and take. She has to memorize the name, dose (how much & when) and what the pill does for her. This list consist of 16 medications. Some are duplicates because of the dosage and some will be weened away in a short time. The Dr. will decide that. Lindsay will be on most of the medications the rest of her life to prevent rejection of the lungs. Most people think she would have rejected them already but there is always a chance of rejection later on.
*Lindsay was trying to remember what day it was and she mentioned she lost a day. I told her that was fine because she has gained more life with the new lungs.
*To break in these new lungs Lindsay needs to cough and blow in to a breathing apparatus. Her coughs were excellent and productive today but it hurts her to cough, so she hugs a pillow on her chest for relief. Her hiccups feel great. She tries to blow into the apparatus at least 10 times every hour to make her lungs stronger.
*On a scale of 1 to 10 her pain is a 4. It is mostly the incision and her throat. Her throat doesn't hurt as much because the tubing was removed, but she said her throat was traumatized by the tubing.

She got her hair washed in a shower cap today by Janis, Jenna, Amie and myself. When she is in the hospital she loves to have her hair braided so it is out of her way and Janis came on her lunch to do it for her. After everyone left we both took long naps. It was well needed. Lindsay is now able to get out of bed (with help) and walk around her room and to the bathroom. She decided to try to eat some warm broth today because she wasn't feeling as hot as yesterday and she said it felt nice to eat something warm. She started to move her head as if she was dancing and snapping her fingers. It was hilarious. I wasn't to sure if that was her or the meds. Speaking of warm, Lindsay had a hypersensitivity reaction to one of the meds. Her arms and face were quite red and flushed and we were told she has 'Red Man Syndrome' as a side effect. It is normal and should go away after the first few doses. She will not be on this medication after she leaves the hospital, so we are good.
Susan thanks for the $6. They wouldn't let me leave.
Keep checking back for more posts and hopefully I can get some pictures up for you. It is a little hard because I don't have a camera so I have been using Dads and I don't have his camera program on my computer.

Out Of ICU!

We were expecting Lindsay to be moved out of ICU today and she was moved around 5:45 p.m. Possibly in the next week (7-8 days) we will be moving to the apartments across the street for a month or so. She is now in her own room so hopefully she can get some sleep. Lindsay didn't get much sleep last night because unfortunately her roommate was keeping her up.

As Amie, Brie and I walk into her room this morning we noticed her hair. It was the cutest 'do' ever. Brie had asked her who did it for her and she said "my bed." It was just up in a pony tail but was sticking straight up. By the way she wants me to tell all of you guys she is "looking good." I got to watch her get out of her chair and walk to her bed. Of course she had help but she was doing most of it on her own. The nurse told her she was dancing because she had to waddle to get to the bed. 2 of her 4 chest tubes were taken out today and she is also hooked up to less IVs. Tears always come to my eyes because she surprises me every day on her great progress.
This photo was taken on day 2. She looks like the same Lindsay (well except for the hospital gear) but she is heavily medicated so she has her moments of looking her best! Her pupils are extremely small. I will post a photo of her cute hair do as soon as I can. I know you can't see much but you can see the smile on her face and how fast she is recovering only after 2 days.

She Needs Rest

Today when I went to see Lindsay she was sitting up in a chair. They have her out of bed in a chair, how amazing is that?! Today she was feeling more pain in her chest, but had plenty of rest. Lindsay was also given apple sauce to take some pills as well as water, jello and ice chips. She was woken up every hour last night so the nurse can issue meds and Lindsay was also requesting meds because she woke up screaming twice in pain. Our 4 o'clock visiting hour was cancelled today, so she can get some sleep. It was a good thing it was cancelled because she got about 3 hours of sleep. She really needed it.
She has a large following in the ICU, so I am sure we really wipe her out too. Her throat still hurts and she doesn't seem to have energy just yet so some times her and I just stare at each other instead of talking so she can be comfortable and not be overwhelmed. Her favorite thing to do is hold our hands. I love the way she reaches out to us to hold her hand. We are all very excited to be there for her and we try to rotate so every one gets a chance to see her, but I can tell she gets tired. By the time her 10 o'clock visiting hour hit she was passed out so we decided to leave and let her rest and recover.
Missy (Lindsay's roommate) and her mother& sister came to visit and brought Lindsay a stuffed, red heart with arms. It is so cute and I am sure she enjoys it. We are being told she is not allowed to accept flowers at this time. So thank you for your kind gestures, but we cannot accept flowers. If you like you can take the money you were going to buy flowers with and possibly donate to Lindsay's fundraising website. Unfortunately, it is not up yet, but I am meeting with the coordinator this Saturday to get more info about the website.
I'll keep you posted.

*RECOVERY*

What can I say...Lindsay's recovery is going as smooth as it gets. We were able to see her in the ICU about 11:30 a.m. this morning. We held her hands, talked to her and waited patiently for responses. Immediately she was squeezing our hands, nodding and shaking her head yes and no. She had even lifted her eyebrows and the best part is she opened her eyes a few times. That was just our first visit with her. We are only able to see her for a half hour every other hour. Each visit throughout the day was getting better and better as her responses enhanced. Her ventilator was taken out this afternoon and she is breathing all on her own! The nurse wants Lindsay to cough and take deep breaths to get CO2 out of her lungs. If she does not do this they may have to intubate her again. We do not want that so please pray for her. She had also received a blood transfusion today as well. I can't stress enough how well Lindsay is recovering. She has more color to her skin, and her fingers and toes are not blue because she is getting oxygen to them now!
We have been asking Lindsay if she can feel a difference with her new lungs but she tells us she feels some pain, but that she can actually breathe! Praise God! She still has a tube that is in her nose, to the back of her throat, then to her stomach. Towards the end of the night she was able to speak to us, but her reaction time to our questions is a little slow because the tube in her throat is not very comfortable. It is said she will be in ICU until Monday and possibly move out of ICU onto a floor unit for about a week. Of course this depends on her recovery and if she is doing well they will move her to the apartments across the street from Stanford. I will keep you guys updated only if you keep Lindsay in your prayers. Just kidding I will keep you posted.
I will not be posting any pictures on the web of her ICU recovery until she is coherent enough to say so because some of the pictures are pretty graphic and I am not sure if she wants them up yet. Of course this is Lindsay, and she will be happy to show them with you, but I am not comfortable without her knowledge first. Sorry.

The new lungs finally came!

Ok. So this is Brie....Lindsay's super awesome friend :). I wanted to update all of you about Lindsay and her NEW LUNGS from my point of view! Yesterday I was at work and I got a call from Lindsay at 11:49 a.m. and the first thing she said to me was "Brie Allen" and I knew right then that she got the call. She asked me to come get her from work so around 3:15 I picked her up and we drove to Stanford. When we got here they were expecting us and they told her to shower up and scrub real good :) They told us that she would be taken to surgery at around 10 p.m. Friday night (5/1). It was just her and I for a while and so we got to hang out and just spend some quality time together which was so nice! Her spirits were high and we both had a good feeling about these lungs! So while we were waiting so many people came in. First it was nurses, then it was a social worker, then a woman who was doing research, and then 2 very nice doctors came in and talked to us! They told us that the donor was a high risk patient which means that he was under a certain age (I believe 25) and that he was at higher risk for diseases then someone who was older (hence 'high risk') and that they ran a bunch of blood tests and other testing on him that all came back negative! Everyone was very optimistic! At around 7 or so all the other friends and family started trickling in until it got to the point where there were 18 of us!!!!!!!! We were all hanging out having a good time, keeping Lindsay's spirits high and then they came in at 10 and told us it wasn't going to happen until about 12:30. Lindsay was bummed especially because she was STARVING. So after more waiting they came back in at about 12:30 and said it would be another half hour to an hour because there was a trauma.....so more waiting! Then, finally they came (at 2 a.m.!) and wheeled her away! We were all so excited and so our entourage followed her! Through the halls we traveled, up one floor, and through some doors and then came time to say "we'll see you soon and we love you". This was the hardest part :(. We all waited in the waiting room and at approximately 3:15 a.m. Jonathon (the nurse) came in and told us it was a go! We were excited...and exhausted! We all slept for a while and waited....and waited....and waited...and waited some more. We got updates every so often and finally at around 10:30 the doctor came and told us that everything went GREAT! He said her old lungs looked like crap. They were filled with pus, super gross and they said that it was definitely time for new ones. I got to go in and see her and she looks AMAZING! I was so amazed at how responsive she was just 2 hours after surgery. She squeezed my hand, tried to smile, moved her head, opened her eyes.....anything you could think of she did! She truly is a loved girl.
Breathe Easy Lindz :) I love you!

We Got The Call !!!!!!

At 9:48 p.m. (Wednesday-4/29) I received a call from Will from Stanford stating they have lungs for Lindsay and wanted to know if she was with me. I let him I know I wasn't so he said he will call her and call me back if he couldn't get a hold of her. He called me back when he got her voicemail and wanted me to try to get a hold of her. Well let me just express that was a hard task I was ever assigned! I called Lindsay about 10 times before I called others to see if she was with them. After my Dad, Brother, Susan, Sid I had no word of where she is. At this point I was heading over to her house to pick her up and take her to Stanford. When I get to her house I noticed her truck was there and I was a little more calm thinking she was there. Yeah right. No one answered the door, no one answered their phones. I started to panic, but Susan was helping me track down Lindsay.

About an hour later 10:49 p.m. I get a call from Lindsay herself asking what do I want. I let her know we got a call and she needed to get her butt home and then head off to Stanford. At this point there were tears, laughs, fears and relief. We headed to Stanford and arrived at 11:30 p.m. They placed her in a hospital room and ran some tests. With the rest of the gang arriving in her little room, we had to take over the waiting room because when you travel with Lindsay there is a large crowd.

We Finally got word that she will be taken to the O.R. about 3:00 a.m. but as soon as 3 rolled around we were still waiting. 3:30 a.m. or so we got the word we had to get Lindsay ready for transplant. Brie scrubbed her down and we were off. The gentleman rolling her to the O.R. said he has never seen this many people follow a patient to the O.R. (We broke a record!) I knew I couldn't do anything any further so I knew I had to leave it up to God to take over. (Boy did he have some plans.) We all said our 'farewells' and 'see you laters' and we shared some more tears and laughs.

At our surprise, the Dr. came out about 2 hours later to tell us that the right donor lung was perfect, but the left lower lobe was not working properly and he didn't want to go with the transplant. We were warned about 'dry runs' (showing up to the hospital and not going through with the transplant due to many reasons) so we were prepared for that in a way, but we were hoping for the transplant. We now have some practice on how to coordinate phone calls and what to bring. I just hope Lindsay answers her phone on the 1st try! ;) We still had to wait in the waiting room for Lindsay to come off her sedatives and that took another 2 hours. She was released around 7:30 a.m. (Thursday-4/30) and we were all on our way home to get some rest, or for some go to work.

Please keep her in your prayers!
And thank you to all who came and supported. Lindsay can't do this alone and she is thankful God has put you in her life! I loved the snacks in the lobby, they kept me going! Thank You!

Right Heart Catherization

There were many test I had to go through and this was the most gut wrenching one...my neck was stiff for hours after this one. This test was to see how well my heart is. Do I need a heart transplant or not? I got to doctors at 10am with Rebecca. They let her stay in with me while they performed this procedure. They laid me down on a bed and began...
The went through my jugular, I thought I was going to pass out. Mind you I was awake this whole time. They laid 3 layers of blankets/sheets over me. I was so hot and needed some air. They gave me a little peep hole and all I could see was Rebecca. I had to hold my neck in this postion for 3 hours. Rebecca told me there was a line of students that showed up while I was under the blankets. After, I felt like I was on an episode of Grey's. Then they began to run their tests. Blowing saline in and out of my heart. Well I have a great one and dont need a heart transplant :) Oh so thrilled.

"This Operation Is Not For Sissies"

As you have read, Lindsay and I went to our 1st transplant support group this week. The title (of this blog) was quoted from an older gentleman who has had a double lung transplant. It made me laugh, but has true meaning to it.
I just wanted to share with you who are interested in donating your organs after you expire. The only way for Lindsay to receive her transplant is if some body passes and the donor & their family have decided to donate their organs/tissue. I know after Lindsay receives her transplant we will be so grateful for the donor's decision, and it would be nice to give some one else life after we are gone. If interested, you need to be registered at the website below. Even if you have a pink dot on your driver's licence, it may not be recorded in the registry. (It wouldn't hurt to register on the website just in case.)

http://www.donatelifecalifornia.org/

...Waiting...

Have you ever wanted to something right here and now and so bad? I have and I currently do. This process is going to be long and involved. Many things can and will happen during this time. I will learn a lot to by all the people I talk to. I went to a support group for the first time today. Yeah I felt as if I was in an AA meeting. “Hi I’m Lindsay, and I’m waiting for double lungs.” But then things got better. People began to speak about their transplants and people who are also waiting for one spoke. Each position takes a toll on you mentally and emotionally. That is what I have all of you for. Cause I’m going to need you! The one thing I am waiting for is my PFT’s to be a high number. My current PFT is 26%. Pulmonary function tests measure how well lungs take in and release air, and how well they move oxygen into the blood. Yours is well over 100%. I will get 75% or better of my lung function back… do you know what that means? I can do all things I haven’t been able to do in a while. I can fly in a plane without oxygen, walk up one flight of stairs, take dance classes again, I can go to10,000 feet, Snowboard again, I will be able to walk, skip, and maybe even run a mile and this is all I can’t wait to do. You may not have ever realized how restricted I have been. Once I am well and recovered I may not stop traveling and doing things I haven’t done in a while. I plan to save some money and go to New Zealand and snowboard, all are welcome and my girls better be saving their money!

Stair Climb

This is Lindsay and I after I completed the stair climb in San Francisco. (36 flights of stairs) Lindsay was unable to the climb because of her CF, but I was thrilled to do it for her. Another climber said they do this kind of event to show us how a person with CF feels after walking a while. Let me tell you I was feeling like I wanted to quit, but I couldn't knowing she feels like this all of the time. Quiting is not an option for her.

Some crazy man on the street took our picture, but I must say he did a fine job. I can't wait to do it again this year with all who are interested.

Day One...The Counting Begins

I am active as of 3:49 pm March 23, 2009 :)

Lisa, the nurse, called me and told me they received all the results of the tests. I am clear to reactivate on the list. I was so excited! I was nervous for a second. I was overwhelmed, relieved, stress free, and content. I know I have made the right decision. And only because God is on my side will I get through this. Phil 4:3 “I can do everything through Christ who gives me strength.” I began to make some calls to tell the world I was listed. I finally got to speak to Dad and Amie. And both Rebecca and Brie were at the gym (pump that iron girls) :) They called me back in time. I am relieved because I have been so stressed just getting through these grueling tests. It felt like so much weight was lifted off my shoulders. And now I sit and wait… and wait… yes that is the only thing I can do from this point on. Tonight I made dinner for Rebecca, Jared, Dustin and Missy. Dustin suggested he’d take me there in 'style' so I think I’ll take him up on his offer, Thanks :) so this is day one of the list. It has been great and I think I want them to just call me already. I still think I’m freaked out, but I’m ready!

All Testing Done....I Hope I Passed

For those of you who are just joining me on my journey for new lungs, I have finished all of my testing required to be listed on the lung transplant list! (YEAH)I was on the list before about 6 years ago and was not fully prepared for the extensive surgery and tasks that followed. Now I have done much more research and I have the best support team to help me along the way.
I'll keep you updated.