Feels like a new day has come

It appears that changes have been taking place in my body and i have finally turned a huge corner in my recovery process. Just the fact that i feel up to blogging today says a lot to me. I am sorry i haven't been keeping up with the blog, but my energy just hasn't been there, as well as the fact that we have a shotty internet connection that hs been acting up this week. So I will give you a synopsis of the week i have had...

MONDAY...
I had my first transplant clinic appointment, and i also go to visit with my friends Steve and Michelle while waiting to be called in to see the doc. My appointment went really well. They were super happy because my creatinine was at 1.4, and all my blood values were all good and everything was headed in the right direction. My INR levels (clotting factors) were right where they needed to be to take out the catheter. The only thing was that my blood pressure started to go up, and they put me on some blood pressure meds. That is normal and a result of the new meeds i am on.
After the appointment we went out to lunch to celebrate, and kill some time before we got to our next appointment at 1pm to see my old lungs in pathology. We went to this crepe place in menlo park, my first outing as a transplant patient. I had not done anything "normal" in so long... it felt amazing to go out to lunch. It also worked perfectly because we were able to sit outside, no one was there, and under heat lamps, so the germs were non-existent. YAY. It was delishious and i was able to eat it. I got a cup of french onion soup, and a caramelized apple crepe. It was fantastic.
At 1 we met Casey to meet the lungs. It was appropriately kept in the gross room. I cant post pictures right now, as i am doing this from the ipad, and my pics are on the computer. But you can check out my mom's blog to see some nasty pictures... i will get some up eventually. It was amazing to see how destroyed my lungs were. They were chopped up from their time in pathology, but you could definitely get the picture that they were "end stage". I was able to see some of the old mucus in the airways, and in disgusting Anna fashion i squeezed the lungs like a zit to get the stuff out. If only treatments had been that easy before. hahaha. It was absolutely fascinating and disgusting to see what i had been carrying around for so long. but i was very thankful for the time the lungs did give me and i made sure to give them much thanks.

TUESDAY...
I got my dialysis catheter removed. We were able to get that done by noon, and come back home to rest. I dont think too much else happened but that was another huge milestone. Oh yea, and Casey took me out for a walk, and i walked for the first time since i have been home without the wheelchair as a walker. I walked all on my own for about10 minutes. Oh yes, and this was the day we realized my chest tube site had finally dried up. No more ridiculous dressing changes all day long. All of my holes are now closed, except the picc line site, where it leaks occasionally, but it isn't that big of a deal.

WEDNESSAY....
The first day since NOV 22 that we did not have to go to the hospital. We just relaxed and rested. I didn't have much energy, and spent a lot of time in my bed. Somethng miraculous did occur. I said to my mom at about 830 am, " I am just going to sit here and enjoy my coffee" WHAT? that is such a normal person thing to say. I have never had time in the morning to "enjoy" myself. I have always been wrapped up in hours of meds and treatments. This truly was the first time i realized how my life has changed dramatically. I have been so wrapped up in the chaos of everything i hadn't had a "normal" moment until then. It was an amazing realization..

THURSDAY (Today)
Today was amazing. I have not had this much energy since before transplant. I can't believe i am still going. This am we went to the ATIC at stanford for my blood draw, which i don't have to do again until MON. YAY. After my mom and i looked at eachother and decided we didn't have anything to do, so we should go out to breakfast. Something i have talked about doing as a wish list thing after transplant. I have never in my life been able to go out to breakfast at a reasonable "breakfast" hour becuse i always had to stay up late doing treatments, then wake up to do more, before i could ever get out of the house. So it was amazing to me that i got to go to eat breakfast at 9am. We went to berrones and ate outside, again, limiting the germ factor. I got a nice scramble and hot chocolate, the best hot chocolate i have ever had, if you haven't gotten one at berrones you must before you die.
Next we came home, watched a show, took a nap, then played banana grams a very fun game, and then i decided we needed some lunch. I suggested pizza and my mom went for it. So we went to Pizza my heart, which is brand new here in sunnyvale. I was able to eat the whole piece, and i was still hungry and i convinced casey to let me get pink berry, which is at the same location, so i got a mini coconut, with kiwi and strawberries, with a waffle cookie. It was the best combo i have had. We then took casey back home, and i saw my park i said "lets go to the park and walk" my mom laughed at me because i have had so much energy today, but she agreed, we pulled over and i walked around the park once, and up and back on the sidewalk. Before transplant i needed to sit on this bench that was about 2/3 of the way through the park loop, but this time, i walked the whole thing without ever needing to sit!!! It really helped me to feel the power of these new lungs. i must say tho, my legs were very heavy, and that is what i am working through now, is gaining strength in my legs, but my lungs work just fine!!! It is so amazing.

I finally feel like i am on the other side, getting a taste of what my life will be like. My mom is already saying that i am going to wear her out. But we will see... i think it will be fun! So many adventures we will go on. This weekend we are planning to head to Livermore. That should be a nice change of pace. We got the blessing from the doc, that i can go that far. The other thing is that i need to work on getting my legs strong so i can deal with the 5 stairs in my house, and be able to go home to see my kitties. I can't wait to get back there, but i am comfortable here with mom, working on getting better. Things are feeling good... keeping moving in the right direction. Thank you for all of your thoughts and prayers, i could never have done this without you. I know the power of positive thoughts, and i know it has helped me make it this far. It takes a village. I don't feel like I am the one with the transplant, I feel like we have all done this together.....

Christmas Eve Day update

I realized i haven't posted in a few days. Well, I am home. We were so exhausted there was just no chance to write. Also, my big fat hand doesn't allow me to do much, and i got to keep it elevated so this kind of thing gets the short end of the stick. Also, my mom is running around doing all my meds, feeding me, changing my dressing on my leaky chest tube hole, and just helping me with everything so we are busy. Our days start out with going to the hospital to get a blood draw and xray. We have to go every single day this week, including tomorrow, Christmas. Boo, but at least i am out of the hospital.

My mom forced me out today and we walked for 13 minutes. I went as far as i could pushing the wheel chair, and then she pushed me back. So 13 minutes is pretty good, working up to 30 over time. But it takes so much more energy to be home, that i have to keep working on building up.
I am not going to lie, it sucks and it is hard and i have a hard time pushing myself out. Especially because it is cold. I hate the cold.

The other thing that is hard now is that Casey has been sick all week and he is still pretty gross it sounds like so i don't think we get to spend Christmas together at all. My Dad may also be coming down with something, but we are still "wait and seeing" till the last moment. So it may just be me, mom, sara and Lou for a couple hours. Kinda a bummer. A big old bummer actually, I miss Casey and Dad. I hope that something magical happens and they turn out to be ok, but right now we are holding off on visiting. So lets hope!

Other than that i am just truckin along... it is hard to be so sedentary, but my brain truly is turned off, it is like flat lined. I have so little brain thoughts. I just sit and stare, just like my upstairs neighbor. But he runs around a lot and makes noise, i guess i don't do that... but i understand him on the slow brain thoughts. Anyways, i think it is time to nap or something, watch a show and take a break, my hand is poofing. Hope you all have a very merry Christmas...

Home is where I am headed

This is my last night in the hospital if everything goes to plan tomorrow. Today I got the chest tube out, yay. It is a little bit traumatizing when ever something is yanked from your body even if you don't want it there in the first place. I was going to get the dialysis cath taken out too, but my coumidin levels were a tid bit too high, so we have to wait till tomorrow for that, but we will know first thing about that because they take blood at ridiculous times here. So here is to hoping that we have a smooth time getting out, it may be late in the day but at least it will be tomorrow, all fingers and toes crossed. I will try to work a little of my magic to see things happen. It worked today as they actually let me leave the unit to go deliver a Xmas card to the d3nurses who took care of me first time round.

Today was also the day that I started walking without a bracing device like a walker or pushing a chair since i didn't have to carry the tube with me any more. That was great. It was more work without the momentum of the chair but I caught on quick. I was even able to get myself to the bathroom which makes me so happy. Independence is a very special thing. I started thinking about all the ways my life will be normal again when I get home... Like no o2 to pull around and dictate what I am doing, I can get the mail if I want without having to fill a tank, water my plants, say hi to the neighbors, not scare them with all the crazy loud sounds and coughing. I bet they all notice the lack of coughing. How nice. So many things I am excited to do.... Just to be home and to have the gift of new lungs, no more dialysis and to be safe with my family, alive is a Christmas miracle. I feel like the rehab can finally begin and the crises of recovery have passed. Bring on the walking and living...... Viva new lungs, new breath, new life!

working on getting better

Today was a good day. Healthwise we are still watching the chest tube, it appears to be slowing, just as we need it to, so it can come out hopefully tomorrow. I am getting moved from heparin to cumadin (spelling) for treatment of my clots. Once the cumadin reaches therapeutic level, i can go home. Hoping for Tuesday on that one, but something in my gut says wed. So we will see. I will be going home on home ivs, two that i have to do, but i will gladly trade it for dialysis, which i still didn't have to do again today. I am still peeing well, and the "puff" yesterday worked out very nicely. my hands are useable again, but my right hand/arm is larger because of the clot, so i will have to wait on that. My kidneys are even working a little better, my createnin level is coming down slightly, which is great. all trends in the right direction.

Casey got a cold, so he is banned from coming to visit, so the banana bunch is down one. But hopefully the amount of time between now and xmas is long enough for the contagiousness to be gone. Lets keep our fingers crossed no one else gets sick, we can't do that now, we gotta keep our eye on the prize, no more complications please.

We were visited by some really wonderful family friends, the Kronicks today. They brought yummy soup and salad for dinner tonight. I also lucked out and jill read my fb post that i was craving hot cider and jelly cookies. they brought them too. I pigged out and my blood sugar was just taken 220, oops. it was so worth it. we had a nice visit, and it was great to see them and catch up a bit. I really appreciate all the love i have been getting, it brightens my days and helps me find the strength to keep doing this everyday.

Love to you all and wish my chest tubes out tomorrow!!!!!

Back to desense

Well, as my sister posted, I had a second surgery, it was super painful when I woke up, and I ended up in the recovery room for a while for them to chase the pain to get on top of it. Luckily now it is controlled with vidicon, followed by miralax. It is still pretty pain ful because I have 2 chest tubes draining the rest of the fluid on the left hand side. I have had a total of 8 chest tubes guys...I think I am going for some kind of record. Let's hope that 8 is great and we stop here. They did find a littl psuedomnas in the fluid in the plural space and therefore i gotta start A cf regimine which I've to get that completely under control, so here I sit dense-ing to merrepenum. Fun fun. I have napped and eaten and now blogged, so it wasn't that bad of a time. Just getting through
Here is the other crazy thing... After surgery my left arm was killing me and was swollen, so we decided it wouldn't hurt to do an ultrasound, well they didnt find a clot on the left, but they did find one on the right hand side, which is contributing to my swelling, and now they are running me on heprin all the time, and I will have to be on blood thinners for a while. It turned out to be a fluke that we found it, and I am greatful. Because I have so many catheters it isn't strange for this to happen, and now that I am under treatment they are not worried. Now I have my port accessed too... Lots going all at once.
Other news, I didn't need dialysis again today, meaning my kidneys are continuing to hold steady. They are leaning in the right direction, there is s possibility that my Xmas gift could be to go home without needing dialysis anymore, so if you got it in you please ask for this Xmas miracle. It would make me soooooo happy. I never bargained for the kidney part of this and it is tough. I don't want to complain because I am so thankful to be alive, and thankful to my donor, but I am so ready to recover and start living with these lungs. I can't wait to get out there!!
Hopefully tonight I will be able to walk more again, to keep my legs a movin.

I have been so blessed to know such great friends, especially my transplant friends during this time. I was visited by nahara, ISA, and Stephanie ( steve's wife) yester day, the day before by Ana, and today by Patrick and Lisa. I also got s card from Lara, and all the support about how it gets better puts everything in perspective to me. It helps me remember there is a big light st the end of the tunnel. I can't wait to get out there with all of them. Maybe even go on the hike at retreat next year? How dare I..... Hehehe.
That is my post for now. I am getting good at typing with an oximeter on my finger. Oh yea, just looked at the monintor, I am 100% on room air thank you very much :) I can't believe it. I can breathe.

Surgery #2

Its Anna's sis writing again!

Anna just got wheeled into surgery. She is getting a laproscopic surgery on her left lung. They will drain some fluid, scrape up the side of her chest wall so that her lung will adhere, and fully inflate the lung. This whole thing should only take 45 minutes for the procedure. Hopefully she will be out in about an hour to an hour and a half. Unfortunately Anna's breathing tube has to be pretty big for the full inflation of her lung so her throat will hurt afterward. Hopefully that is the worst of the recovery from it. Will let you all know how it goes!

Let's get it flowin

I figured it was time for an update again, right ? Well, it turned out that I actually needed 2 chest tubes instead of one. I am actually glad they put them in because about 2 liters have drained out, and that is double what my old lung capacity was. The good news is that my lungs have inflated again, and they took a ct scan to check how things are going in there to help us to figure out how to proceed. They need to determine if my lungs have stopped weeping on the inside ( at the site of where they had to roughly get the lungs from the chest wall ( if I understand things correctly). One thing I have had to remember during this journey is that I am a slow healer. I don't just pop back like some people. I never have. I always find my own way to do things. They usually require the road less traveled and a lot of hard work, so this figures that my transplant journey would turn out this way too. I am getting stronger every day ( which I didn't see for myself until the other day) my toungue is now healed which allows me to eat real human food. My amounts are not up that high but tonights Chinese food helped a lot. I have been taking walks at least 3 times a day, and today for my last walk I made it twice around b and c floors, in a gigantic ( for me) circle. I spend a lot of time in a chair instead of the bed ( thanks to the comfy furniture on my new floor here at Stanford ) I am trying my best and I am just really really praying, thinking positively that my kidneys come back fully. If you can please keep them in your mind. I am peeing more, but we are not back yet. Keep the intentions, prayers, thoughts and love coming their way. The hardest part is the dialysis because I have to do that on top of all the other transplant stuff, which is all knew and kinda crazy. I know it will calm down soon, but I am just a little overwhelmed by it all still ( well, not still hahaha). I just had no idea that transplant would be this difficult. It is a hard one. Tonight is 3 weeks since my call. Holy crap. Right now 3 weeks ago I was doing my last CPT treatment ever. How crazy is that?
Tomorrow we wait for more news but the probable let out date for me is weds. I will try to post more tomorrow!

Back at stanford

Hello all, Anna here. I am feeling well enough to make a quick post (from my awesome iPad) thanks mom and dad. I had to go to my follow up appointments today and now have to report that they had to bring me back in to put in another chest tube to drain the crappy old blood that has accumulated in there. The good news is this isn't serious but the bad is that I have to be back, but the stay won't be too long (here's to hoping) and I have to do more dialysis so it isn't all in vain. Where did this positive attitude come from? It sure has not show itself for anwhile, but it is nice to get a glimmer of hope of my old self. Let's hope she sticks around the rest of the time. Signing off for bed now. Night night from Stanford......

Day 16 Post Transplant!

ANNA MODLIN IS OUT OF THE HOSPITAL! YAHOO!!!!

It finally feels like we are now officially on the other side of the transplant.

Phew! We did it!

Anna gets out of the hospital today!

It will be so great for Anna to get out of that darn place and back to more comfortable territory. Anna is going to be going back to the apartment that is just down the street from Anna's home. My mom and I have been staying there for the past few months as we were waiting for Anna's Tx and trying to keep her healthy. Anna is going there because there are no stairs so it will be easier for her to move around the house. The unfortunate thing about getting out is now she will have to have a blood draw EVERY DAY (OIY)! Which means she has to do the trek back to the hospital all the time. She also still is not done with dialysis and has to have that every other day. So Anna is going to be busy busy even though she is getting out of the hospital.

One of Anna's current challenges is wearing the mask. She feels like she is suffocating and it gives her a bit of a panic attack. I tried one on and even for me it was incredibly hard to breath in. Any of you transplanters have some tips for her?

Day 13 Post Transplant

Anna is continuing to do well. Yay again for pee! Although her kidneys are still not all the way back to normal and they will have to do dialysis again tomorrow. She was able to eat somewhat more substantial dinner tonight as her sensitive tongue has prevented her from eating anything more than cream of wheat. Tomorrow they are going to start with the medication education where we get to learn about what needs to be taken and why. The latest goal is for Anna to go home on Wed! Wow! That will be fabo! She has had a hard time sleeping here and I think her healing process will be easier once she can really rest. Thats the latest!

Anna PEEEED!!!!

YAY PEE! She has peed last night AND this morning! WOOOHOOO GOOOO KIDNEYS!!!!

Sorry for the short update, but I will post more later!

Day 10

Today Anna is up and wanting to move. She keeps getting stronger everyday. Its rough for her to be in the ICU, since now that is not the place for her. We are waiting on a room to be available in step down again, but looks like it might be one more night in ICU since things are full up. Her mind is back, but today she is starting to realize how hard this all is. Anna keeps saying "I had no idea how hard this really would be." Its hard for her to see all the progress she has made. Anna is now able to sit up and stand up all on her own, which she needed help with before. She also has a lot of edema and is weeping out of all the punctures she has had in her arm. This causes for her skin to get really sensitive and its uncomfortable for her. Last night she was able to watch Glee! I think that cheered her up a bit. Today I bought her a coloring book called "The Potty Book." I think she will get a kick out of it. Hopefully we can also take her for a spin in the wheelchair and get her outside. She is getting stir crazy as anyone would be who was sitting in a hospital room for a week and half.

Kidneys still havn't kicked in yet. Go, Kidneys, Go!

Day 9 Post-Transplant

Anna is back in ICU, but doing much much better today. She is still confused, but a little bit back to herself. She was up for walking around today and eating. All good things. Anna got moved to the ICU because she pulled out her central line while she was sleeping. Luckly the nurse had put on a bed alarm and they caught what she had done quick. They wanted to monitor her while she was so out of it and not her self. Once she really gets back to being able to take better care of herself they will let her go back to step down. Anna had to get a pick line and a new dialysis line in yesterday, and now she is up to snuff again!

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!

A Variety of Updates

Banana Bunch Update: All of you out there go beyond everyday, with emails and kind words and well wishes. I feel it and i love and have much gratitude for you each day. My kind friends have offered so much hope and encouragement. I wanted to share that one of very close friends, Ana, shared with me her 1000 paper cranes. They are thought to bring healing and I have been told are very powerful. They are hanging on a sculpture my grandfather made, blessing the house. Thank you Ana for sharing, I hope they bring some good fortune into this journey.




Finally, my new friends from the Power Of Two, took a picture in their shirts and shared it with me last night. I felt it NEEDED to be seen. Despite the long hours they are spending creating a fantastic movie, they spent a few silly moments thinking about me, and sending me the vibes. Here is the Director/Producer, Marc, and Editors, Tom and Matt as the silliest banana bunchers!


Health update: Since my transplant evaluation I have gained 4 pounds. I know that scares some people, but for me, it is great. The more weight i can have, the healthier BMI that i am at, the better. I feel really good in my body right now, and as the dietician at CF clinic said, I am "rock solid". So that is great!!! In lung news I blew a 0.85L for my FEV1 which is 27% Just exactly the same as my last visit to the transplant clinic. Again, we are doing really well. Stable, keeping on track, doing all the things right. My only complaint right now is this little rash i have from constantly having the oxygen cannula (cannolies as i call them) rubbing on my upper lip. I have like Cannoli burn. But that is the worst of it right now. They were very impressed at how well i am doing, and it is just really hopeful, so i can wait it out till the absolute right lungs come along.
I asked if there have been more offers for me, and Dr. Dhillion said that my name is coming up, but things like size haven't been quite right, and the perfect match hasn't come up yet, but it will. He again said he would be surprised if it didn't happen by the end of the year. So that is only 2 months away!!! SOON SOON SOON. He also emphasized that none of us know anything in this game and we can't predict, but he did say that this from previous experience, so i am hopeful.

Spiritual update: As we were walking the halls at Stanford we ran into my mom's friend, Bruce, a Chaplain at Stanford. They worked together back in her Chaplain days :) Anyways, we ran into him, and he wanted to talk with us, so we asked if he would be willing to give me a Jewish blessing. He took us to a little corner in a private waiting room, where he gave me a fantastic blessing. It was calling in the archangels, and all the positive energy for protection during this time. It was great. He also acknowledged the cycle of life, and the gift of transplant. It was so great and reassuring. It was another great experience that came out of this magical transplant journey.

The Bunch Collage

I had asked for pictures to be sent when i sent out the shirts... and many have come in. My friend Linda also began collecting pictures to put together for a collage. She took on the project to help me out, but we ended up completing it together as two heads are better than one, and fun times with friends are better than doing things alone! Saturday Linda brought over a bunch of loving pictures of friends and family. I was so overwhelmed and humbled by all the love in the pics. We got a big old poster board, similar to the ones we used as kids for the science fair. We spent a couple hours of planning and designing and constructing. It was a nice day of fun and creativity. I needed that. What we came up with was an awesome collage full of love.



I want to encourage any one else who received a shirt to still send in a pic to my email
A13@aol.com OR even if you didn't get a shirt, send a pic of yourself holding a sign or just your cute face. I am planning to make a mac book with all the pics to have as a keepsake, and the more pics the better. I would love to include everyone... so don't be shy! Thanks so much for the support and love. I feel it every minute of every day!!!!!

Today is 92 days of waiting on the list... I am hanging in there... day by day by day.....

His Holiness, standing in for Grilled Cheesus...

Today was Sushi lunch day. We took a trip to our favorite sushi place, YAKKO, and had a nice lunch. Mom and I try to have as much fun as we possibly can. If that means stuffing our faces, so be it. Well, she didn't stuff her face, that was all me. But I am happy to announce that my blood sugars were just fine after eating all that, and i was relieved. After lunch we walked over to East West Bookstore, looked around a little and went home.







I did the temptation roll and a bento box, with agedashi tofu and sashimi. Mom had only 2 of the temptation and i ate the rest. I was still full when dinner came around so we simply had grilled cheese and homemade chicken soup.

Now look at what happened to my grilled Cheese... do you think it is a sign?

The Power of Two, and me?

On Saturday night we ventured as a family to the first viewing of "The Power of Two". It was a rough draft, but still very very good. I have posted previously that I did a couple interviews for the movie, but I had no idea that I would be so present in the film. I am still a little in shock that My face and the intimate details of my illness are all on display. I am doing it for the purpose of education and to share with the world, the hidden life of Cystic fibrosis. I expected to be more embarrassed about my exposure, but the fact that the team, the editors, and director portrayed me in such a realistic and honest light, it allows me to feel that i am not just a character, I am me. Granted, my personality gives me a lot of character, but they did not try to make me "the poor sick girl". Obviously I am sick, but I am still me. My mom was in it as well, she was there as my support. They could not include my whole family, as this story is not actually about me, it is about Ana and Isa's journey, and the differences of organ donation . I am just a fleeting character in their beautifully moving film.

The main purpose of this film is about organ donor awareness, and therefore really needs support to be completed. All the funding comes from donors. I wanted to put out a call to action to see if any of you my blog readers would help to donate and financially support this important film. It takes money to get the word out, and providing a tax deductible donation will help. Please visit The Power Of Two and click on Donate, to make a contribution. I thank you in advance. This movie needs to make it out there... it is going to help move this movement forward. The way to more donors is more education. Please, Please Help this very important cause!

The greatest gift I have ever received

Yesterday was a day to be savored and remembered for my entire life. It was a day where kindness and compassion led the way. It was a day that I believe was 'supposed to happen'. It felt like a destined journey. I was personally blessed by His Holiness, the Dalai Lama.
Honestly, I don't think there are words to describe the miraculous experience that it was for me. No matter what your religion or spiritual practice, there is no denying that the Dalai Lama is a powerful being. He eminated light and kindness and hope. Every fiber of my being was lit up from just simply watching him walk through the doors of the Ronald Mcdonald House. There was the hustle and bustle of the secret service, the papparazzi (that were supposed to be there) and his translator, his fellow lamas. He had an entourage, but it didn't take away from the amazing grace that this man exudes from his soul. He literally walked through the doors and it just felt like a burst of sunshine. EVERYONE's breath was taken away. We were in a room of children, and there was SILENCE, absolute silence. It was an awesome moment. totally awesome.
He is such a memorable and famous person, yet so familiar and safe. One of the kindest people I have ever met. Let me qualify this, he is ONE of them ONLY because i have had other personal experiences with lamas before this. Lamas, are the kindest people you could ever meet. Their touch is soft, and comforting, but firm with direction and intention. They have smiling faces, and kind eyes, but they are full of wisdom and depth. All the Tibetan Lamas in my experience have had this experience for me.

I can't quite quantify or explain this event that took place yesterday. The timing and the magnitude of the situation that unfolded just is so humbling and incomprehensible.

I have been gravely ill twice in my life, NOW, and when I was diagnosed with CF. When I was diagnosed with CF my mom took me to see Lama Gangha. We spent many days together while he gave me blessings and honored me with herbs and special "Lama Gangha numi-nums" as i called them. They were small balls of black incense/herbs that were blessed for me to ingest. I have had magical experiences. Lama Gangha was my friend. I forgot about Lama Gangha for a while when i was growing up and became a teen. The memories faded of our times together. But recently it is all flooding back to me. The taste, the smells, the touch, the feelings, the healings. I need it.

The experience of needing a transplant forces you to dig deep inside yourself, into a place where maybe you never thought you needed to go. Mentally it is taxing. It forces you to find peace and comfort. Many turn to their different faiths. I have heard many stories of those who have found god, because of this. My understanding of this experience is that there is a karmic connection to these lamas. I can't explain the fortune that has been bestowed upon me at this time, this time in my life, in my greatest time of need, that the Dalai Lama would appear and I would be welcomed beyond all odds to share in this auspicious experience.

When i learned that he was coming, (back when i was at my sickest in this journey towards transplant) I just knew I needed to see him. But how could that be? Why should I be so lucky? Who am I to get this experience? I am not a practicing buddhist, those are the people, the people who know of his greatness and follow him, those are the people who should see him. Not me, how could i be worthy of this? But the little voice inside my head told me that I would be there. Now, it isn't a complete miracle that we were there, but in many ways it is. My mom was the orchestrator of the Healing flags project at Ronald Mcdonald House. This was something she was consulted about when they began the new flags project in honor of His Holiness. So we assumed that maybe we would be able to attend. Well, as it turned out they had to make decisions about attendance, and it was only allowed for their biggest financial contributors and the sick children from the house. Obvious choices. So as of Tuesday we believed there was no way we could attend. However, on Tuesday night at 7pm my mom's cell phone rang, it was Honey, the executive director of the Ronald Mcdonald House. She had mulled it over, and it just didn't feel right to her that I could not come. I am so gravely ill, i need all that i can get as i work towards my transplant. This is what she told my mom (quote obviously summarized). She bent the rules, and we were allowed to go. We had previously filled out the paperwork needed to attend, because my mom had helped to install the flags, and she did so in hopes that we might go. How awesome was that? Thanks mom!

This experience truly was the greatest gift I have ever received, as of now. The ability to attend and the blessing I received.

When he entered the room, he touched many of the children, asking some what ailed them. One boy, sitting infront of me with his father had liver cancer, and his surgery was scheduled for that day, but the doctors agreed to postpone it so he could meet the Dalai Lama.

He just spread healing and light to the whole room. He spoke for a few minutes about the sadness of children being ill, but if looked at with a new perspective it isn't sad. They can find other ways to look at it. He also spoke of Tibetan medicine.

He traveled around the room, blessing the children, and some of the parents who were there. The house provided white silk scarves to be used for the blessing, this is traditionally known as, kathas. I stood up and moved forward from my second row seat, to the front, where he could reach me when he came by.

Once he reached me, time stood still. He knew exactly what i needed. He went to quickly put the katha on my neck, and took my hands in his, and realized i needed more than that. He stopped, and looked me dead in the eye, staring. I don't know how long this actually was, my mom thinks it was about 30 seconds or so, but it felt like time stopped. With all hope and openness i looked right back at him dead in the eyes. I have not been this close to many people in my life. But this was close. He held my hands, and looked into my eyes, and then kept looking and touched my face, and my hands again. When he finally let go, I could barely utter "thank you". It was the most intense experience of my life. It was such a personal experience I can't share all that I learned from it, and i will continue to learn as it settles in my body. But i can tell you that I heard my mind yell out to me "Woah, NOW, I am ready".

His Holiness also held my moms hand, and offered her a blessing. This was such a tremendous gift for both of us. A culmination of lifes work for my mom. For her project to be honored and seen by the Dalai Lama himself! WOW. I don't think she even understands the magnitude of that either.

We were not allowed to have cameras or I would have included a picture. But there were paparazzi there, and the pics should be available to the house at some point, and we will get some i am sure. I can't wait! But until then, i will leave you with this...

Om Mani Padme Hum

Namaste...