Cindy in Chicago - Day Ten of Freedom

Tuesday
5-24-2011

Got a phone call from the transplant clinic late yesterday. Seems like there was a communication error and they wanted me to have blood work on Monday. Will have to go this monring. Then I have more labs on Thursday and see the doctor on Friday. I dread the lab--so crowded and hot and stuffy and long waits...but must do. Hope all labs are good. There are tests that can tell if I'm still dehydrated. I keep wondering if my magnesium level is low or some of the hard core antibiotics Im on are zapping me. Only two more days on those.

This is my view from the couch. Finally sunny today.
I like to watch the Citi light at night.
Comes on at 8 and goes off at 11.

I have such a kink on the right side of my neck. Could be low magnesium or just the way I had to lay in hospital. John doing some massage and I keep putting a hot pack on.

Well, more later!

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Nine of Freedom

Monday
May 23, 2011

John and I had an AWESOME 29th anniversary today. We took the bus north and had a great dinner at Chilis, shopped at my all time favorite store, Trader Joe's, and we were going to close the day with a dollar McDonalds hot fudge Sunday but were too full. Maybe on Tuesday. Great anniversary!

Both of us want to go home so badly. But I've got at least two more weeks maybe three. The only problem I'm having right now is very low blood pressure. I'm eating good and drinking a lot of water and even protein drinks. Praying it wont be bad enough to re-admit me to the hospital. That would freak me out.

So I am CLAIMING that tomorrow, Tuesday, my blood pressure will ne back up to normal! I do not want anything to stop me from getting better enough to go home.

Anyway, here are some pics from today. And been keeping in touch with our son, Jonathan. He's taking care of things back home. John has been a trooper too. He's antsy to get home. 8^)

At Chili's

My amazing husband!

Oh the joy - Trader Joe's!

A very special 29th anniversary!

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Days Seven and Eight of Freedom

Sunday Night
5-22-2011

This weekend was a bit slow going for John and I. Bad weather and I really had to get some strength back. We walked to a few places, watched movies, and checked in at home with our son, Jonathan.

John and I married 15 years, Jackson 1 year,
and our son, Jonathan was 7.

Monday will be more productive. John has an office here in one of the Post Offices to work at and I will actually do my laundry tomorrow. Then...

It's our 29th WEDDING ANNIVERSARY! Monday, May 23, 2011 is 29 years since we got married. John got the raw deal when he promised "in sickness and health." But he has honored and protected me and been the most amazing husband.

We will probably try to find somewhere to take the bus or train or walk to for dinner. I hear the zoo is FREE so we may try to go there. He has to work half the day.

I finally feel better tonight so I guess the tons of water and better amount of food has helped me get strength back.

Storming tonight and there is a tornado watch. Looks cool to watch the lightning from the 38th floor window.

More on Monday. Pics to come! Nite Nite!


Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Six of Freedom

Friday
5-20-2011

Today was appointment day. It was tough. I had become very dehydrated and didn't realize it. Anemic after six days of no food before I could eat. So I was weak and dizzy. Labs were at ten. We took the bus over and the driver was so erratic. Abrupt stops and fast take offs and we were sitting side ways. Two old guys got into a fight. By time we got off our stop, we were so happy to be free.

The lab is not quite the best experience. Always crowded, screaming kids, had to wear my face mask, it was hot and stuffy, and we had to wait quite a while. Once that was over, I thought I couldn't even walk. We went to the cafeteria in the hospital and I got an authentic Chicago hot dog--another okay experience. I favor the NY dirty water dogs! I drank as much as I could but was way down on fluid.

We had two and half hours to kill so John and I walked to a shopping center. But it got to me and we had to make our way back slowly, stopping for me to rest.

We got to the clinic early at 1:00 PM and my appointment was at 1:45. There was an LED TV mounted on the wall with a soap opera on and the volume was SO LOUD--so excruciating loud, it was like torture--like someone tying you to a chair and forcing you to watch the show you hate the worst for hours.

Then, for reasons unknown, EVERYONE got called before me even though John and I were the first ones in the waiting room and first to sign in. And the nurses in the office were in very bad moods so making a comment or complaint would do me in for ever. That seems wrong doesn't it? But John and I have been in dozens of medical facilities. There are times you know the people in charge can make your life miserable and get away with it--over and over. This was one such office.

So the waiting commenced and the blaring TV pounded at our heads. Two and a half hours later, I got called but only to weigh me and do vitals. "Go out and take a seat."

I plopped into the plastic chair once more. At least the soap operas were done for the day and the news was on. Hallelujah.

Then I got called again, finally. The doctor was pleased but I was way too dehydrated and anemic. Had to drink more and start eating more. "When can I go home?"

"Not for two or three weeks. We like to keep people at least four weeks to be sure there is no rejection. I'll see you next Friday. Have labs on Thursday."

I understood his assessment. He's absolutely right to keep me until I am stable.

We headed for the train and made our way back downtown. Stopped at The French Market to get some high quality organic ground beef and cheese to make burgers for dinner--no bread. John and I split one scoop of Espresso Gelato and I had an Irish Cream truffle. It was a good ending to the day.



Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Five of Freedom

Thursday
5-19-2011

Weather hasn't been very good here but today is finally sunny. Chilly but sunny. John took me walking downtown Chicago. I wanted to try Chicago Pizza. Have to say, it was okay, but we're used to NY pizza. So we walked down to Giordano's, grabbed a seat at the bar, and ordered a Caprice salad and small thin crust pizza--cheese only. It was a great dinner.

Look how weird--John moved the camera and it slanted the pic!

Then we followed the canal back toward the apartment, took some pics, enjoyed the sights, and the freedom of us being together without me getting sick. I have gone from 24 pills a day to 36, but that will come down a bit in time.

What a feeling to leave to go somewhere, walk about, tour sights, and not have to drag insulin pump supplies, worry if I have candy in case I go low, do I have pump backup supplies and glucogon. We had an awesome day and I walked ONE AND A HALF MILES at a good pace!

What a great day!

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Four of Freedom

Weds.
5-18-2011

Being discharged today. ONLY five days after a pancreas transplant. Unheard of! But the docs see no reason to keep me. Yahooooo.....

We waited out front of the hospital to get a cab. But after a half an hour, I said, "Let's just take the train. I'm fine." That we did. And I slept happily ever after that first night!

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Three of Freedom

Tuesday
5-17-2011

The docs are blown away. I'm eating solid food and was doing well enough to get discharged back to our temporary apartment today. But my fever spiked a bit. Seems like the central line in my neck was wanting to get infected. So I bought myself a full day of IV antibiotics.Having some electrolyte imbalance too. Giving me magnesium.

So I walk the halls and follow the protocol treatments. Funny, I'm walking so fast and doing so good that I'm the hot topic on the floor. Even visitors pass me and say, "Hey, you're the one who walks so fast and is recovering like no pancreas transplant before!"

I do have my friends joining me: My Heartman, Dr. Gumby, Biker Gumby, and Policeman Gumby. They join me for all walks.

Dr. Gumby fell off one time so now he holds on real tight.

Mr. Heartman and Biker Gumby are a bit more adventurous!

Policeman Gumby likes to be on top so he can patrol the area.

And, there have only been 10 pancreas transplants done on a person with a previous heart transplant years before in the past 20 years and actually ever in the US. I retrieved the data from UNOS--United Network of Organ Sharing. So I'm only number 11. Now I need to find out how long each person lived and how they did. Diabetics just don't live long enough to survive a pancreas transplant. These docs here at UIC have never done this before.

Speaking of UIC--the care here is simply amazing. The docs talented, personable, caring, and love to help people. ALL the nurses and other people like the pharmacists, aides, food people, maintenance people, everyone--have been fantastic.

And then there is my husband, John. He caught a flight Thursday night and got here at midnight. He never left my side, creating a makeshift bed out of two chairs. He's the best ever husband. I'm not sure I could be as faithful and long suffering as him. Thank you, honey.

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Two of Freedom

Monday
5-16-2011

Making great strides. Nose tube out. Liquid diet. Oh, God help me. Why do hospitals serve GREEN jello? I took a few pics. Still not needing pain meds. Prayer and the power of the mind. I have faith in a God much bigger than me and my miniscule health issues. Others in this world are suffering far worse than me right now. I am blessed to have this opportunity to live longer!

So no more diabetes. I feel stable--balanced. I feel free to live although I still suffer with a heart transplant, cancer, skin cancer, and all the other issues. BUT I have a new chance to live much longer than expected.

Average stay in this ICU unit after a pancreas transplant is 7-10 days. I'm bucking to get out soon. 8^)

Oh, and how cool. I'm staying alongside the Walter Payton Liver center. We talk about hm often during Donate Life Today! presentations. Football player extraordinaire, he could not receive a liver transplant in time. Money and fame DO NOT put you ahead of other people. His generosity is helping many in need of a liver transplant.

Are you signed up to be an organ donor? 18 people die each day waiting for an organ transplant. There are more than 110,000 people on the list. NO myths you have heard are true. Check out http://www.dontatelife.org for information.

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day One of Freedom

The new countdown begins. I received my life saving pancreas transplant on May 12, 2011. Thursday afternoon. Things are fantastic. I'm doing great. Now my posts will update my progress and count UP to go home.

UPDATE: 5-22-2011 - This was posted Sunday, only two days after being in ICU. The first day awake, Friday, was the hardest. I found myself tied down with arm restraints. I was okay with it once the nurses explained some people actually toss around and try to pull out the ventilator and nose tubing. But it was hard.

And nothing is as difficult as being awake with a breathing tube and nose feeding tube in. Pain, choking, nauseous, feeling like a truck ran me over...but I made it. And when I posted the fist few lines above from my iPhone, I was actually disconnected from the ventilator, still have the feeding tube in, but was up and walking.

I only took pain medicine the first day to ease the anxiety of having tubes down my throat and nose, but then only took ES Tylenol and been on it since. NO PAIN MEDS! Pancreatic surgery is on of the most painful I was told. But I believe in moving, getting up, being alert, and not depending on pain meds so your body can start to heal and your mind can work on positive steps forward!

More updates to continue now that I'm back up and running!

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Twenty

Average wait time at the University of IL: 180 days. Days I've waited on the list: 187

Wednesday
5-11-2011
1:30 AM


UPDATE: 1:10 PM. Heading to take a shower. Then to the hospital as quickly as possible. Surgery should be around 9 PM tonight.

----------------------------------------------
I'm doing my all night working thing. Good thing. I just got the CALL! There are two possible pancreas donors. I will know over the next 8-10 hours.

Ode to the Pancreas...

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Nineteen

Average wait time at the University of IL: 180 days. Days I've waited on the list: 186

Tuesday
5-10-2011

12:05 AM
It's officially Tuesday high up in my glass enclosed living room. I keep trying to go to sleep early but can't. My mind is officially on overload. Bad habits I have developed.

Yesterday's post was so serious. I remained uninspired the rest of the day. Worked on an editing job, organized, made phone calls for a prescription lost from Walgreens, letter to take care of for fund raising organization, still can't get my Mother's Day card from my son because there's confusion with the mail. So so so...not the hospital or management's fault--patients just don't stay long in this apartment and the mail carrier doesn't know yet I'm here for the duration.

http://www.pjsministry.org
Rev. Dr. Billy Bonthius

Cindy and Christine.
Just two crazy girls in the rainy
town of Maple Valley, Washington

My sweetest friend, Billy, is providing the funds for a great friend to fly out here like around June 7th. Christine will be a great comfort--she's like a sister from home. And we can have some girl time. I'll be recuperating and it will be great to have a friend to help if I get into trouble. She'll be able to stay until I leave. Flying here--no car--so she'll ride the CTA (Chicago Transit Authority) with me unless it's a day where Lenee pick's us up.

Thank you, Lenee. I love ya gal!

Well, that's all I have to say for now. I'm lost for content. Scared I may be wandering into mindless bliss--like when you get numb from the constant pressure.

Maybe I just need some sleep.

Even though it's today, I'm hitting the bed to get rest. I thought maybe after I take care of unfinished stuff in the morning I will go sight-see somewhere in the afternoon.

Maybe.

Maybe I'll have some awesome pics.

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Eighteen

Average wait time at the University of IL: 180 days. Days I've waited on the list: 185

Monday
5-9-2011

Monday, Monday... I'm singing, Monday, Monday...

Sunday was great. Not because it was Mother's Day--I was alone and away from my husband and son. It was great because the sun shone and I spent time with some wonderful people. It was great because I have a place to stay, groceries, my mini computer, a phone and cell service, plenty of sleeping options, a fantastic view, people who love me, and a doctor who is willing to give me a chance.

Without Dr. Oberholzer at the University of Illinois, I would not have an opportunity to be on this list for a pancreas transplant. He is the only surgeon willing to help me. Not getting a donor pancreas will leave me with a very short life span--really. He will join the list of people in my life who saved me from death. They are as follows:

1. Carole Fenkler - Seattle, Washington. She worked for the insurance company as my case manager. She did the research and found the program I qualified for to inject FGF-1 in my coronary artery. The FGF-1 grew another artery and collaterals that kept me alive. After I had the new artery, my main blood vessel blocked up 100% and I would have suffered a fatal heart attack. That new artery also kept me alive long enough to receive a heart transplant. If Carole had not taken the time to find this experimental program, I would surely be dead.


2. Dr. Thomas Stegman - Germany. He invented the FGF-1 that without, I would surely be dead.


3. Don Harter - Wenatchee, Washington. Because of his generous help, my surgeon, his team, and his equipment, were flown by Leer Jet to the hospital where my donor was. He only had three hours to get there and repair her heart. Then they were all flown back, escorting the donor heart, in the same Leer Jet. Without Don's help, I would surely be dead.


4. Dr. Icenogle and Dr. Sandler - Spokane, Washington. They performed this heart transplant on July 14, 2005 even though it was doubtful I would live. Diabetics rarely get approved for a heart transplant. Dr. Icenogle literally saved my life two times as I was in critical condition before the transplant and after a double bypass surgery. Without their diligence and dedication, I would surely be dead.


5. Danielle Martinez - Olympia, Washington. She is my heart donor. Her heart beats in my chest. Without her kind nature, giving disposition, and care for others, I would surely be dead.

I can't type all the people here that made my life possible. I wish I could. You're all part of my miraculous survival. The five above are the ones that directly affected my life. But there are so many more. Dr. Canaday knows how many times he saved me from death with unheard of interventions. The ER staff when I coded two times. Ambulance drivers. My husband My son. So many more...

I'll be back later today. Let's see what I can find to do today.

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Seventeen

Average wait time at the University of IL: 180 days. Days I've waited on the list: 184

Sunday
5-8-2011

I'm not sure I like the titles to these blogs... Cindy in Chicago - Day One, Day Eight, Day What? Ouch. I have to find the blog from Julie and Julia. Did she do this count up type of thing? Or did she count down the recipes?

I'm kind of getting into a bad habit--staying up to crazy late, early the next day hours. I hate going to sleep. I don't feel satisfied that my day was productive enough. I don't feel like I'm home and yet I don't feel like I'm leaving anytime soon. I don't have a goal or a vision or a cut off date. I do have a better Interent connection at night. Hmmm...that's a good excuse. 8^)

Check out my favorite slippers. I already own a pair but they wore out to the soles. Haflingers from Germany and although these retail at $89 I get them off Ebay for $24 and no shipping. They are heaven for my feet. The color--well I could have picked blue or solid brown but love this orange pop-sickle look.

Maybe I'll call it a morning. Sleep in and come back to update again. I think I'll do a pancreas 101 blog soon. Lot's of people asking me what and how and why do I need a transplant. Be warned--the pictures you are about to see will be gruesome.

Pancreas pics another day. Being that today is Mother's Day and I'm all alone, I decided to make it "all about me." Hahahahaha. (Where are you Angie!)

Lenee picked me up with her three way cool awesome kids and they took me out to a 50's diner--Ed's. She knew I'd like it because all the employees are trained to be very mean to everyone. I SO LOVED IT! I want to get a job there. Like, "Hey, Lola, is that really a baby in your gut or a humongous tumor?" That was one of my come backs after she called me a retard. Oh I found my dream job!

So why about me? This amazing stylist in the city here cut and colored my hair. Oh, she did a superb job but I am sad I lost my wild, crazy look. It's a perfect surgery doo--easy to deal with. But everyone says I look cuter and younger. You let me know what you think. There are lot's of before pics and then a couple of after. Oh wow...

Speaking in Florida March 2011

Nose surgery Summer 2010

Winter 2010

Winter 2010

Summer 2010

September 2010 Florida

Summer 2010 Church Picnic

Fall 2010 after nose surgery

Bryan Duncan and I Summer 2010

Winter 2011

These are after the cut...and color...

May 8, 2011
Even my nose looks big.
I don't see me as cute--I look old, worn out

Yucky Poo - I'm ugly now!

And the voting begins. But if you think the last two--my current state of hair, is the best, you really have to get new glasses. Your prescription is too old. Yeah, I know It will grow back. I will have high-low color again to reflect my whimsical personality. It has to be my surgery doo and cannot be done to me again.

Okay, I feel better now that I vented. Happy Mother's Day - Bah Humbug!


Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Sixteen

Average wait time at the University of IL: 180 days. Days I've waited on the list: 183

Saturday
5-7-2011

Oh wow, like very much oh wow... My PeaPod order just arrived and I feel like it's some kind of Christmas or my birthday or something. I have groceries! Yes! You should have seen me ripping into the bags. Fruit, water, lemons, deli meat, Greek yogurt, Kettle chips, bla bla bla. I'm going to have Amy's organic brown rice cream of rice and a cup of Starbucks coffee for breakfast. Might even make some bacon.

Here's my delivery van--it's green--my favorite color!

More later today...after I see what today brings.

Later that day, things change for the foggiest.

But it's a bit difficult to see what today will bring--is this like "lake effect fog?" I watched it slither into the city and cover all that was below with its gray canopy. Reminded me of the original move--"The Fog."

Outside my window...

So I spent the day making phone calls and working. Walked downtown a bit again. Arranged my laundry and checked out the laundry room. Found a stack of books called the "Resident's Library" which is simply a ledge with scattered printed matter from cheesy romances to hardcover law journals. I chose a cheesy romance to take for bored time reading. I am outlining a five book fiction series and have not written much fiction. Figured I'd need to learn what fiction is to write it.

And I forgot to post these marvels of technology below. When I first saw them I thought they were like, "disabled chop sticks." But I was educated--they are "Cheater Chops." Some college engineering student's first year project I suppose. I'm just not into chop sticks. Want to be able to get that food in my mouth. Can't you tell?

Cheater Chops

Oh, this is before my very short hair cut.

Visit me at http://www.cindyscinto.com

Cindy in Chicago - Day Fifteen

Average wait time at the University of IL: 180 days. Days I've waited on the list: 182

Friday
5-6-2011

I have lot's of pictures today. I know this post is late, but had lot's of calls last night and Skyped with my sister-in-law. Gave her a tour of the apartment!

I had to be down at the UI hospital by 10:15 AM for lab work. I planned a bus route and left early. Kind of cloudy and still cool today. But sun in the afternoon.

The bus was easy to figure out and I walked to join the others at the bus stop. No food or coffee--even though I was allowed to eat with this blood work, I figured it was better not to. Boarded at my stop and we had only went a quarter of a mile when I got off thinking it was the wrong bus. It was the one I wanted, but in a closed in bus with people coughing and a sick baby, I decided to get off and walk.

Armed with water, my hiking bag in place of a purse that wouldn't be practical, and my NEW Keds my mom sent me, I took the trek to Taylor Street. It was a good hike and I used my iPhone to keep an eye on my location. I arrived at the transplant building as an ambulance sped past blasting the familiar siren. The loudness and rumbling tires made me look to my left. There I saw two woman standing by their car embracing tightly. It made me pause and walk slower. They lingered--not noticing anything around them, crying and holding each other.

Someone must have died.

My head spun with the possibility their loved one was a donor. Oh my God, what is wrong with me? How can I think of myself when they may have lost someone? I was sick over my reaction and disgusted with myself. But if they did lose someone and the person was a donor, they will find comfort much later when they learn of the many people who were helped.

I studied their faces. I wanted to remember them so if I did receive a donated pancreas, and it could be their loved one, I want to remember their sadness and hopefully turn it into joy.

This is what it's like when you're waiting for an organ donor that is needed to either save your life or prolong it. When I received my heart transplant on July 14, 2005, it was to save my waning life. Want to know more? Use the links to the top right to order my first book, A Heart Like Mine, or pre-order the second book, A Heart Like Yours.

So I continued to the lab and after blood work got a salad and some eggplant parmigiana in the cafeteria.I studied the routes on my iPhone and found a train I could take back. I liked that idea better--I could move around if someone was sick and the area is more open.

Took the Pink Line to the Loop and when I got off, did some exploring. I visited the French Market and browsed fresh produce, seafood, baked items, and oh man...truffles to like die over--literally. I purchased one and ate it a while ago. I'm still in euphoria.

The market was great and housed a CVS where I stopped and got some items then off to walk toward "home." But before I had gone far there was this traveling bakery-in-a-truck. Look at the license plate below--and I love it that it's totally pinked out with FLAMES painted on the front. So I got a birthday cake pop on a stick and partied tonight.

After all it is Friday.

After all, I'm here 15 days, alone, and survived so much turmoil to finally be safe where I am.

After all, I walked more than 2 miles at a brisk pace.

After all...that's all I have to say now... (thank you Forrest Gump)

Pictures of my day today:

Steam plant at University of Illinois Hospital

Adorable hand painted bench at the train station

I take the Pink line!

My cake pop and truffle. So delicate...

Truffles, oh truffles, wherefore art thou?

Beautiful but banana not my style.

Will try one of these next time.

This is the one I had.

YUMM is right!

The cupcake mobile!

University hospital

Escalator to Heaven?

Waiting for the train.

Visit me at http://www.cindyscinto.com