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!