ICU Tonight

Anna is moving to ICU tonight. Anna is very out of it and needs to be more closely monitored. Hopefully they can work her meds out so that she can be more present. She has slept through today which is good as she hadnt slept in three days. We need the rest with not having to stay with her all night. Hopefully we can recharge our batteries while she is in ICU and then we can be back to helping her out more when she come back to step down.

Day 8 Post Transplant

Hello Everyone.

This is Sara again, posting an update on Anna. Sorry I havn't posted in a while, life has been insane over here, literally.

We had a rough night last night, but Anna is doing better now. Good thing this morning is she got her last two chest tubes out. Yay! Keep sending Anna all that love and support. She really needs it right now.

Day 6 Post-Transplant

Good thing today is Anna peed! Yay! Pee!!!!! Hopefully that means that her kidneys are starting to work again. Anna went on 3 walks today also! She is getting stronger and stronger everyday and her coordination is getting back. Anna was able to really eat her first normal meals today. The main problem for her right now is she is having paranoia from the drugs and is having a hard time with reality. Can't wait until that goes away. Casey is staying over with her tonight in the hospital.

First Post From Anna!!

Hello Bloggers!
I am tired right now, but I wanted to say hello to everyone cause i know that you are anxiously awaiting my arrival. I know that I am doing well, buts its hard work. Thank you for all the love and support. I went on two walks today and got a massage. I walked all the way around the nurses stations. But that made me tired and now its time for bed. Goodnight!

Day 5 Post-Transplant

Anna got moved to step down last night around 8PM and now is in D3. It is so much quieter and so much nicer here. Better for recovery when you dont have to deal with all the crazy of the ICU. Anna had many firsts today. She went for a walk today and got all the way down to the end and back. Woohoo!! She also is starting to eat more solid foods today and for dinner she ate ALL of what was brought to her. Graham crackers dipped in ice cream was her favorite. Those calories are going to make her feel so much better. Unfortunately she had to do dialysis again and she really doesnt like it cause its so hard on her. Also her catheter wasn't working so it ended up taking 4 hours until her 2 and a half hour dialysis was all done. She is starting to work with the physical therapist and is trying to get her hands working again. We are excited about her progress and hope for another good day tomorrow.

Day 4 Post-Transplant

Anna is waiting for a room in step down! She is completely off of her blood pressure meds and is in good spirits. She looks so great and is so pink in the face. The solumedrol is giving a little bit of hallucinations but they seem to be happy ones, seeing birds and balloons. She now is sporting some great blue sushi socks that she is showing off now. We are continuing to decorate her toilet paper rolls for her room in step down.

A report from Linda Shak: I just went in to visit Anna with Casey and Sara and she looks and sounds AMAZING!! She was very chatty and was cracking some jokes. We told her all about the love she is getting on facebook. She LOVED hearing about all her supporters. Anna has to breath into a spirometer to help her expand her lungs and she did a great job. It was so fun to watch her do it because each time she tried to breath deeper and deeper and get her number to go up higher. Every time it would go higher, her eyes would get big and she gets a big smile. I asked her what it was like to breath with her new lungs, and she said, "I don't feel anything. it's so weird. It's amazing, It's awesome!" It is amazing and awesome! She also told us, "I got really good lungs!" We also told Casey that now that Anna doesn't have three treatments a day, Casey should give Anna 3 massages a day! She liked the sound of that. I am on cloud 9 from my visit with Anna and practically skipped out of the ICU. Sara checked with the nurses station and it sounds like Anna will be getting moved out of the ICU into stepdown within the next hour or so. Yahooooooo! I am just so filled with thanks on this thanksgiving!

A Cafeteria Feast

Today we had our thanksgiving turkey feast in the cafeteria of Stanford hospital. It was nice to be able to have turkey, mashed potatoes and such eventhough it wasnt very good. We held hands and expressed our great thankfulness to the donor and their family, who is having a very sad thanksgiving day. Thank you to them for giving my sister life. Thank you. Thank you. Thank you.

Anna's update so far is that she is going to be put on dialysis tonight. That will hopefully help her feel better and take out some of that edema.

We are also so thankful for how good Anna is doing. Please send love to the other families waiting in the NICU with us, who are having family members who are not doing as well as she is.

Happy Thanksgiving!

Happy Thanksgiving!

Day three post-transplant!

Anna got three chest tubes out today! She will have her last two in for a while longer.

The wonderful ICU doctor informed us today that she has never heard lungs this clear, this soon post-transplant. Woohoo!

Her kidneys are still not up to snuff so please keep sending that loving energy to them.

Pee! Pee! Pee!

End of Day Two!

Anna's new lungs are kicking butt! She has no more cannolis (oxygen) and has great O2 Sats at 97%! Wooooo go new lungs go! First time she has been off of full time oxygen for about a year. So great! Anna has been sleeping most of the day and her color is starting to come back and she is getting pink in the cheeks!

Anna had a dialysis line placed today, in case she needs it tonight or tomorrow. Her kidneys are unhappy and really need your love! Please send her healing energy and lets get her kidneys working again.

The Greatest Gift

Thank you for all of the wonderful support and well wishes from everyone!

We all appreciate it so much!

As Anna is now very immuno-suppressed she can not receive any flowers or plants.

If you would like to send a card to Anna she would love to receive that from you.

If you would like to send a gift, the greatest gift would be to sign up to be an organ donor at....

www.donatelife.net

And a donation could be made to any of the following charities Anna supports...

United Network for Organ Sharing
www.unos.org
Donate Life, California
www.donatelifecalifornia.org
Cystic Fibrosis Research Inc
www.cfri.org
Power of Two Movie
www.thepoweroftwomovie.com

Thank you again for all of your love and support!!

Day 2 Post Transplant

Morning update!

Anna is continuing to do great! This morning when we came in she was sitting in a chair and now is on a liquid diet. Woohoo! Her gourmet breakfast consisted of Jello, Chicken Broth, and Apple Juice.

One thing that is happening is her kidneys arnt doing super well. The doctors have said this is common and is dues to some low blood pressure during the surgery. They have reassured us that her function will most likely come back, but it might take up to a few weeks to restore function. She is still on some drugs that they need intense monitoring so she will be staying in the ICU for a couple more days before she can be moved to step down.

Anna is in high spirits and we will see her again in a couple hours.

Anna Sat and Stoop Up Today!

Anna sat up on the edge of the bed! Brushed her teeth! AND! Stood up for a whole minute!!! GOOO ANNA!!!! She is in such great spirits! (She says its because they had her drink some sugary drink, chalky, but delish!) She also is able to see now!

After asking her about how it feels to breathe with her new lungs her response is... "I don't know? I don't notice it. That's the difference, Ive noticed it for my WHOLE LIFE and now I don't." I have to say that her breathing already is COMPLETELY different. If you know Anna well her breaths were always shallow and fast, now they are slow and steady. This was the moment Ive been waiting for. Anna is kicking butt and is on the road for her new life!

We have been able to be hanging out intermittently with Anna all day. She is becoming more and more herself and you can see from her big grin and thumbs up! Shes hungry, which is great, but unfortunately for her shes not going to be able to eat for a good long while. Its really one step at a time here. She has been so sweet and told the surgeon that he is her hero and is so thankful for all of the care and support.

Here is the current camp Anna, with all of us tuned into the internet.


Trying to return atleast some of the many emails of support and love. We have had people trickling in and out through out the day.

THE FIRST BREATH!

Anna just took her first real breath with her new lungs at 11:30AM! She is breathing on her own and doing great!!!!! She got extubated at 11:30AM, 22 hours after she left surgery.

More on Anna's first breath!

We got to witness them taking the tube out and when they did they she had to cough to get out any stuff in the lungs. All that came out was a little bit of liquid...THATS IT! NO MORE CF MUCUS! WOOOHOOO!!! She is stunned, amazed and confused as to how that happened. Then...the big first breath! A little weak, but that was totally different than any breath she had ever taken before.

Since then we have seen her one more time. Again she is waking up more and more. Her eyes are starting to focus more and she is aware of whats going on around her. Go ANNA!

Anna is back!

Just went in for our 10AM visit. She is waking up more and more. This time she seemed like she really could try and write so we got her a paper and pencil.... "Why am I" was what she got out first....then it was "white." Why are you white?! Oh god the drugs! We eventually realized that she wanted the white board, Casey is bringing it from home so we didnt have it to give to her. So she threw the pencil at mom! Ohhhh Anna and her fighting spirit is alive and kicking. She also told us she isnt in any pain which is great.

Dr. Weill came by and told us that he is very happy with her and how she is doing. There are going to be a few bumps, but the things she is going through are totally normal. They want to get her out of here as fast as they can, so hopefully will get her to step down tomorrow and then out of the hospital 4-5 days from then.

GO ANNA! Keep up the fight to get better!

Anna's First Morning with New Lungs!

Anna has made it so far and is a trooper (however an incredibly sedated trooper).

She still is intubated and will hopefully be extubated sometime tonight. They are trying to ween her off oxygen and then once she is totally stable they will try and take it out. She has a fever now of 102 that they are watching. There are going to be ups and downs and we will just have to ride the ride.

Dad stayed at the hospital while we all got some sleep. After falling asleep at 5PM we feel ready to go back to the hospital and be Anna's cheerleaders!

Update: Just went to go see the bananers. She is conscious that we were there and really wants to communicate, but until we can get that breathing tube out its too hard for her to try to write with all of the drugs she is on. Its hard to see her in so much pain, but we know this is the shit time and we just have to get through it. Please send her healing thoughts!

SURGERY IS DONE!

Everything went well! The doctors came out and just told us that everything went well and she is all done! The lungs were great and they will watch for complications. She is all chest tubed up and will be going to the ICU. Hopefully we will be seeing here in two hours!

We are camped out in North ICU with toilet papers rolls we are decorating for Anna's room.
We are all amazed and joyful at the great news. Can't wait to see her!

She definitely had VERY sick lungs and she will finally be able to breath with these new lungs!

Love and prayers to the donor and the family.

Anna's Transplant

Hello All!

Anna's little sister will be commandeering Anna's blog while she is unable to write.

Wanted to give you all an update on the night so far...

Well, we got to the hospital a little after 11PM tonight and went to admitting. But low and behold, no one was there! After a few moments of "Uhhhhh what do we do?" I did my usual daily ritual of calling the OR (as I go to the lung transplants to get the old removed lungs for the CF Research Lab to use in our research). We found out where we were supposed to go and that her surgery was scheduled for 4AM.

We made our way down to E Ground and got settled in. Going to as many transplants as I have been, I knew they were always pushed back. Somehow the time went by and those five hours went zooming past. This call felt much more real. It is really going to happen...

Lots of love and kisses were given to Anna and we all posed for a gazillion photos.

...Then...at 4:30 AM they walked in and told us it was time for her to go!
All of our stomachs flipped. This was really it. It is really happening.
This is the fastest transplant I have ever witnessed. They are normally scheduled for a time and then pushed back at least 4 hours. Thankfully we did not have to wait that long. Our waiting is over!

We went up to the second level with her to see her off. Walked up to those OR doors and gave our last kisses as we watched her wheeled away, cracking jokes like our usual crazy Anna. The doctors don't know what a party they are in for. The nurses said that everything was a go and Anna would be under and intubated within 15 minutes.

We have settled into our new home for the next 7+ hours on the second floor, waiting for news and being grateful for the donor and the donor family. Thank you to this family that has been able to see outside of their own grief and give this great gift to my sister. Please send good thoughts to them and to Anna!

I GOT THE CALL! AGAIN!

HEY ALL... I got the call again. This time it feels real. Good old DR. Steve Singh called, they got lungs for me (sounds like they are YOUNG ones) A match in all the ways... they said to get there faster this time. So heading in right now, rushing to get ready. Doing my last hypertonic saline neb right now. PLEASE SEND GOOD VIBES. I feel it. Needing the strength for me and love for the donor and their family. I really feel this one is it.

It really is when you least expect it.

Love to all!

Anna Banana :)

114

114 days.... The shock of the dry-run is wearing off. The more i talk about it the more the shock goes away. Fear and anxiety has set in a bit. Looking for my optimism. There is a glimmer... but this truly is the hardest thing i have ever had to do. My mind and emotions are taxed today. My brain hurts.

Looking for distractions, but i think i need to be with it instead.

I was asked today if i had three bits of advice for others who are waiting on the transplant list...

Advice? I barely know how to do this myself. I don't know if i am a good example...

1. The thing that keeps me somewhat sane is to TRY to do something normal each day.
2. You also have to stay focused on what you are doing in the moment, even though you want to be doing everything in the world BUT this. Working harder than you ever have in your life, just to maintain to get to the transplant.
3. Being surrounded by your friends and family. They can be there to pull you up and you to pull them up when you or they need it. LOVE IS KEY.

Those are my three things i guess.

Even though it was generally a good day with friends and family, a great lunch, and some fun window shopping, i am emotionally exhausted, sick of this, and not sure what to think.

I have transplant clinic tomorrow...I figure that I will be talking about this dry run experience... asking questions, and looking for answers that may or may not exist. As we head towards the 3rd week of November I can't believe it. I am surrendering, I need to relax... going to try to take a mental vacation.

Off to blow...

Today is another PFT, another Blood gas, another 6 minute walk test. I thought that I was going to get away with not having to do these this week. My dry-run tricked me into thinking i was done with all this monotonous waiting and testing.

Thanksgiving is coming up. The stress of planning it and thinking "if" we will even be having a "normal" thanksgiving is kind of getting to me. The unknown is getting to me. Trying to settle back into a life that is sorta uncomfortable is not fun. Trying to not get too psyched that the call will come "really soon" is hard. Trying to let go again is hard. Trying to keep up the diligence is hard. Making sure my O2 tanks are filled and it is ordered so that i can *maybe go to my parent's house for thanksgiving is hard. I wish someone would take it away. I wish i had the answer. I wish we didn't have to plan just to maybe un-plan. I thought i would be having a second wind to get through this waiting after the dry run, but because we are getting into the holiday season it is getting stressful. The holidays to me are not my favorite time. Sorry, but it is true. I spend so much time with my family, and now that on top of everything else is just hard. I love my family all the time, i don't need a special occasion to love them. My mom just said it best. (She doesn't know i am writing this as she said it) "I need a vacation" AGREED! I say lets take a vacation from the holidays this year....

My Wonderful Sister

Sara is the best sister. I wanted to tell the world, or at least the blogosphere. My sister has been such a huge support in my life. Despite being the younger sister, she acts as the older and very responsible one. She is so kind, caring, and compassionate. I don't think I could ever thank her enough for all she does. She is so important to me, and her friendship and help has been irreplaceable. She gave up her weekend to spend time and help out Casey and I this weekend. Her help allowed us to recoup from the craziness that was the dry run, while still diligently staying on top of my treatments and nutritional needs. I enjoy her tremendously. She is so easy going and fun to be around. I am also so proud of her accomplishments and her goals. Sara is a top notch girl, and i am so proud to call her my sister. Thank you Sara for all you do! Hopefully when i get my new lungs I can repay you for the many many ways you have given to me :)

The Dry Run

Well, as my mom said, I am having the FULL transplant experience, dry run and all! I guess what i should do is take you through the whole "call" experience to get everyone up to date and on the same page.

I went to bed at about mid-night, I put the phone by my bed, turned off the light, hooked up my bipap, and played solitaire on the ipod touch for a while to fall asleep. Casey was watching family guy in the other room when i went to bed, so the lights were still on and the Martin/Modlin house was not completely asleep yet. I had been asleep about 30 minutes when the phone rang. I can't remember much, but i looked at the phone, and didn't see it say stanford or private, so i was a little confused, but who else could it be at 12:42am? I answered, "Hello?" "Hi, is Anna there?" "This is Anna, ummmm" There were some holy shits, holy craps, and "wait, can you say that agains" because i was so confused from being woken up. I was wondering what Casey was doing, and he was listening on the other line, in the hall. We were both dumbfounded that the call had actually come!!!! We have been waiting for this for a long time, and it was here. How strange it is. My wonderful friend Ana told me on Wed, "no matter how much you know or prepare, nothing will really prepare you for what it is really like" YUP. I believe this to be true, and i didn't get that far in the game yet.

Back to the call... He nicely and calmly told me that the donor was at Stanford, and that more tests will be done in the morning to see if the donor was indeed suitable. He said, "Now, get some rest, and come in at 8am." GET SOME REST ? CRAP. You know if you get woken up from a dead sleep, and try to fall back to sleep when Santa is coming... not really that possible. I went completely numb all over my body. My hands were clammy. I realized because i had taken my bipap off to talk, i wasn't wearing my O2, and figured that would be part of the tightness in my chest ;) I quickly put that on once i figured it out. After we got off the phone, I looked at Casey and we both looked shocked. NOW WHAT? Do i call my parents or wait because he told us to sleep? NO, Call!!! So i called them, and informed them. They were shocked too. I don't think they slept much either. After talking to them we decided i should call Sara, instead of letting her sleep, because she would be pissed if we kept it from her. Well, it turned out her phone was turned down low, and i called 5 times and she didn't pick up. I texted and left her messages, but no answer. My mom ended up going over to the apartment (she was in sunnyvale) at 6am to wake her.

We went back to sleep. Casey actually slept, I laid there for a long time, finally falling back to sleep at about 330. We woke at 530am to do my "last treatment" and get a shower and head to the hospital. It turned out NOT to be my last treatment, as I am doing one as i write this ;)
Despite all the planning, when the call came, my brain flew out of the window. I wasn't sure what to bring. Luckily i wrote a list that i kept in my bag, with all the electronics i needed. Cords, phone, computer. etc. We loaded everything in the car and headed off to the hospital. Luckily mom and dad came over to help us load everything. Casey and i were overwhelmed. As many people know, we are not morning people and getting out the door was very difficult. I am glad we had the help.

Once we got there, i was worried because we were a little late, but the room wasn't even ready yet. I went to admitting and said, "i am here for my transplant today?" It was so surreal to say that. Once they got me checked in, we sat in admitting until the room was ready.





We got to the room pretty quickly. Mom, Dad, Sara, Casey and ME. As much as i want every other person there, they were already calling our group a "party" so it just isn't the place for large groups. But that is why the collage is so great. I will be able to have everyone with me, when it really happens!!!!

Anyway, back to the daily events... We got to the room, I put on a hospital gown and got hooked up to a heart monitor. I got placed on the intermediate ICU for Cardiac patients, and was treated as a heart patient. Kinda bizarre, but fine.






I sat in the bed for not longer than 20 minutes before the surgeon fellow (who called me) came in. He told us that he had bad news. The lungs were not good. He told us a bunch of stuff but I can't remember much of what he said. I was kinda like, ok... already out the door in my brain. The donor was given a scan and they found that even though the history didn't indicate, the lungs had emphysema. So I am very glad they discovered that, and did not give me the lungs. They did say that if i had been in dire straights, like on a Ventilator they would have accepted the lungs for me, because their function was good despite this finding.

So it ended quickly, which i am thankful for. It wasn't a drawn out process and I didn't have to get any unnecessary pokes.

The doc told us they are getting quite a few offers, so it may not be long before i get new lungs. I do have a friend who got their REAL call the day after their Dry run... so it could happen quickly. But for now, I would like to get a good nights sleep. I am off to bed early tonight, worked hard to get a treatment in early. Gonna have some pumpkin pie, mothers oatmeal cookies, milk and head to bed!!!!

I am still thinking about the donor and their families tragic loss. Hoping that their family finds peace, a that their loved one has given new life to others....

I couldn't do it without all of your love and support. I feel it has given me strength that i never knew i had. Having you all supporting and loving me and my family makes me elated and so humbled. Even though I can't respond to every text, email, comment, or facebook message, know it means the world to me and my family. We feel the love, appreciate the love, and we can feel how much you care! THANK YOU!

Now i go back to the grind stone. Tomorrow is day 110 on the list.

I GOT THE CALL!

I got the call at 1242am. They told me to back to sleep and come in at 8am. So I am finishing up my last treatment, shower, and heading in. They told me the donor is at Stanford also, so that is great. Less time out of the body the better. My brain is so scattered. Updates will come as we know more....

Keep checking in for more.

The Magic of Julia Child

During an adventurous cleaning of the garage this weekend, I was frequently out of breath from bending over and lifting. These old lungs just don't work like the used to. As a result I had to rest a lot, and we have a chair in the garage, where i relaxed to catch my breath. While sitting there I was perusing our over stuffed garage, something no couple of 28 and 29 year olds should have. We shouldn't have so much crap at this point in our lives but we do. It is due to hobbies, massive amounts of medicines that are stored in the garage, inherited crap, things from our parent's garages' (from our child hoods), decorations, and our need to hold on to stuff, because we might need it later (and we usually do at some point). We also inherited stuff, from my grandmother, my mom's house during their move, and my mom's friend Virginia who moved to the east coast to be taken care of by her family.

Virginia allowed us to pick over her stuff, and i found some great things, and of those things, a variety of old, interesting, and unique books. At the time we put them in a box, and then eventually put them on a bookshelf in the garage, we just don't have room in the house right now, but books are special, and worth keeping. Well, while i was resting my weary lungs, i was perusing the books on the shelf and noticed a copy of "Mastering the Art of French Cooking" by Julia Child, Louisette Bertholle, and Simone Beck. I took it off the shelf and realized it had never been opened. It was old, and wrapped in plastic. I had noticed it once before, but just forgot about it in the craziness that has been my life for the past 6 months.





I learned from my mom's love of antique road show, DON'T OPEN IT. In my head i knew i could not open it, for it would decrease the value. So i just left it, not thinking too much of it, except it was pretty cool to have something like that by an icon.

Fast foward to Monday...

I mentioned to my mom that i had found this book in the garage, and something within us got excited about it. Could it possibly be a treasure hidden in the garage? My lack of excitement these days gave fuel to my ultra excitement about the possibility of this book being a hidden gem. My mom has found numerous things that she also got from Virginia that were worth something, and i was told that she was a book collector and knew what she was looking for.... COULD IT POSSIBLY BE?????





The excitement started to bubble, and i told my mom to go get it from the garage. That is when the frenzy began. I googled it and saw that people were selling first edition, first printing versions of the book in more of a worn condition for anywhere from $2000-1200 dollars. NO WAY!!!! My little brain started to go wild!!!! I couldn't simply look inside to solve the mystery because it was perfectly wrapped in plastic... how could i tell??? We continued to look up the book, different info about it, we noticed that the book did not say "volume 1" on it, and this indicated to us that it was indeed possibly a first edition, printed BEFORE a volume 2 would even be thought of. The picture of the dust jacket matched the ones in the pictures. I just felt like it could really be something special. How could we tell???? We figured, lets talk to someone who knows books, so after a few calls to used book stores we learned that we needed to head to Bells Books in Palo Alto, to talk to Faith, she would know. She didn't come in till 3pm, so we had a little bit of time to get things done.




Once shopping was done and things put away (thanks to my wonderful mother) we headed with the book to Bells books. We fantasized about how much it could be worth. Could it really be a treasure, what if it is just a dud? Oh well, we won't know until we know.... We got to Bell's books at about 320. We got there and Faith was busy talking to someone else, and couldn't be bothered. They told us to come back later, they didn't know enough about this book to help. They said she would be back again on Wed, but to make sure to call before we come in. DARN.

We were so excited to find out. We realized the bottom line is -- how can we possibly tell what the book is worth if we can't open it? BUT if we do open it -- we might depreciate the value. But how to tell? We racked our brains the whole way home. We thought if we open it then it will be worth less... but it isn't worth anything if we don't know what it is! I finally made the executive decision to open it. We would be very careful and re-wrap it the best we could once we knew.

We made sure to document the entire process. I carefully used a knife to slice the top, and i slid the plastic down. I must admit i was pretty nervous. How stupid would we feel if the book is a dud? But how exciting would it be if it really is a FIRST EDITION, the first printing of the book? We just HAD to know. The cover came down slowly and even though it was old, surprisingly came off in once piece. It was unwrapped. HOLY CRAP.... it was like Charlie in the Chocolate Factory and unwrapping the chocolate bar to maybe find the golden ticket....



From all the research we did on the Internet we learned that what we really really wanted was it to say FIRST EDITION, printed in August 1961.

I opened the first page...... Taking a deep breath......
It said....



1968!!!! DARN.

I looked further and realized it was the 17th printing. Initially I was a little bummed, and just wrote it off as just an old book, but after the buzz wore off i thought about it further. It was still a first edition, still possibly collectible. It wasn't the cash cow i thought it might be... but still, it was published before the Volume 2 was created... maybe worth something?



I did some more research today and it looks like maybe, just maybe I could get 300 bucks or so for it. That is obviously only if someone wants it, and wants to pay that... i think i will pursue it further to find out the possible value. Still, even though it isn't the holy grail of antique roadshow finds, it was still an exciting adventure and could be worth something... How exciting.

I must say that i will cherish that experience. It was a real live treasure hunt. The lesson is that the fun is in the experience and not just the result....

Should i realize that about this whole waiting for transplant? The waiting and the hunt for the lungs is the best experience? NAH, i think the holy grail of the lungs is what i am truly waiting for.

How Can I help?

I have been overwhelmed by all of the love and support from family and friends. It is becoming a bit of a long haul getting to this transplant, and I thank each and every one of you for bearing with me to get there.

Many of you have expressed concern and a wish to help. I have figured out a great way that ALL of you can help.

As the cold and flu season is quickly upon us, i am most likely going to be getting this transplant right in the thick of it. I would like to ask each and every one of you to PLEASE GET A FLU SHOT. If you plan to visit me in the next year and especially the first 3 months after transplant I really need you to get a flu shot. Even though I have had one, well two by accident, I need YOU to get one as to not BRING the flu to me. Even though I have had the vaccine, i will be seriously immune suppressed. It is a small thing for you to do, to help keep me out of a life threatening situation.

You can be contagious without even knowing it, and having this preventative measure is so important. I know many of you hate needles, but so do i. I also want to live, and thrive, and be supported by all of you. I also ask for you to tell me if you do for some reason get the flu mist vaccine, as I cannot be around someone who has gotten a live vaccine for something like 6 weeks after transplant. I just want you all to understand the magnitude of this. The world is going to become more dangerous for me to live in, and i would really appreciate the gesture of helping me out.

You can get flu shots at your primary care doc, or any pharmacy such as CVS, Walgreens, or even Safeway.

In addition, there is another epidemic in California of Whooping Cough. The last statistic i heard was 6,200 cases. I just got my booster shot of T-DAP to prevent against this. It is recommended for people in close contact with me to get this booster as well. It would be a kind gesture to do this as a precautionary measure.

I know we all hate shots, but this one could help save my life... please consider this compassionate act. It will also save you from sickness as well!!!!

DIOS

Well, it happened again. DIOS, a typical CF bowel blockage. It started with a bang on Wed late morning. The pain began as different than usual, but quickly progressed to mind numbing abdominal pain that radiated through my whole abdomen into my back. It was very high up, right under my sternum. Because it was so high, the miralax that usually helps to push things along and clear out the gut was not working. If you can't keep things down, they can't push it out. I was violently ill a couple hours after eating breakfast. The Clinic finally called me back at 4pm and ordered a KUB (abdominal xray). We went over to Stanford to get the xray and learned I was FULL OF SHIT. Because once i got back home i again got violently ill and couldn't keep down my miralax, we had to go back to the hospital to the ER.

It was an amazing experience, we got to the hospital at like 830, got in a room (private after asking for one) and had an easy experience with the intern and attending. They communicated with the Pulmonary on call doc easily, and got the ball rolling so fast, I was admitted to a floor by 10pm. They kept telling me that I must know people to be out that fast. They didn't even have enough time to get all the procedures done, and had to race to get my IV in and history completed.

I got moved to F ground, and most of my orders were in. They were able to start my bowel regimen and things started moving along. One of the greatest RTs saw my name and came to find me. He was so awesome. He came back at 1am with ALL MY CORRECT MEDS!!!! We did a treatment and he stayed with me until about 2am. It was so wonderful to have such a caring person watching out for me. Thanks David!!!!

I only got about 3 hours of sleep , and a few naps, but things moved a long and i was able to have a lot less pain, which was soooo good. My poor mom was right by my side. I know how hard it is to watch me with this problem because the pain is intense, and the standers by can't do anything to fix it. I really do appreciate them being there and supporting me. Bringing me heating packs, rubbing my back. Guarding my hospital door, and all those undisclosed ways my mom helps me which are completely and totally embarrassing. Mom, you KNOW what i am talking about :)

I was able to get my electrolytes replaced, and go home within 21 hours of getting to the ER. It was quite impressive. My stomach is slow now, and kinda feels like it was hit with a bomb, but i am getting better. Staying on high doses of miralax to keep it moving and avoid another episode. The thing that is frustrating with this problem is that i can't predict when it is going to happen, and i do nothing wrong to cause it. I thought I had found my trigger foods, but this time, nope, i had eaten nothing that would trigger it, except maybe some cupcakes? If that is a trigger food, i will be very very sad. Usually it is pizza, macaroni and cheese, you know, lots of melted cheese. At least my lasagna hasn't caused problems. I love my lasagna. Just talking about it makes me hungry.... yummmmmm......I digress....

Well, I am happy to be home. I slept so well last night. I could barely get up for my treatment, then i went back to bed to nap a full on under the covers, pjs, bipap nap. I slept over 1 1/2 hours. I will feel caught up on sleep after tomorrow i am sure. Hopefully my tummy feels that way too...

The lucky part of this whole adventure is that i was able to have treatments the entire time. I usually have to miss some due to pain, or inability to get them in the beginning of a hospital stay... but it worked out perfectly, so my lungs are just fine (as of now). I am going to work hard to keep it that way. just gotta get to this transplant.....

Ok All... Modlin, OUT!

His Holiness the 14th Dalai lama pics cont...

Continuation of the pictures...







A beautiful day....

His Holiness the 14th Dalai Lama....

I wanted to share some of these with you...

The most beautiful day in pictures...

More will come soon, pics are hard to download onto the blog. Stay tuned!

Weekend Update

It is November.... holy majoly!

I had a nice weekend. On friday I went to visit my parents at THEIR house. Oh my god, i actually went somewhere ;) We went out to dinner and spent some time at the house with Roxy dog. It was a nice adventure outside of my own house. On Saturday Casey and I slept in, and when that happens we usually loose the day to treatments... so that is mostly what we did. I did get my exercises in and i got quite sore. I am up to 10lb dumbells for my arm curls and other arm exercises, which i don't know the name of. I also did 15 pushups, and 30 squats and 50 Calf raises. I find it interesting how these little things get me so out of breath. I can't wait till I have useful lungs... i will be able to do so much more and kick so much more butt!!! The good thing is that I was able to cough out all the extra stuff i was feeling. I did a whole bunch of neil med sinus rinses, and got all that extra crap out and now feel fine again. I was wondering if i was going to start going down the exacerbation road... but i got it out!!! YAY.
Sunday was a nice day as well. Casey and i got up at a more reasonable hour, did treatments and went to get some yummy cinnamon roll and apple fritter. We went to Whole foods (to get stuff for casey's fresh siracha sauce he makes), CVS for halloween candy (which they were out of and only had CHRISTMAS candy), then by default we had to go to safeway to pick up the halloween candy. We came home, rested and treatmented and then went to pick up dinner at FIVE GUYS. It just opened here this Thursday. My review is that it was just OK. The bun was really soggy, and that kinda ruined it for me. Also, i got mayo on it, and i really don't like mayo on the burger. The fries were excellent, as well as they had CHERRY COKE on their soda list. Which is definitely a win!!! We came home, put out the candy for the trick-or-treaters, and ate our food. It was a good weekend that is for sure!