A Promise Is A Promise!

Friday
8-5-2011

Okay, I'm back. I brought my previous blog to critique group last night and there were great suggestions for me to take and correct. I will when I add these stories to book three, (http://www.AHeartLikeMine.com) but for now, a blog is a blog...

And a promise is a promise. Right? Not in Chicago last week.

I'm really trying to look happy ... really, I am.

After I got dried up and changed and had some lunch, I headed back out to go to my 1:15 PM appointment. I dressed in cooler clothes, had water with me, and stuffed my food logs for the dietician in my purse. I was glad to have time to see everyone and get some questions answered. Better diet to lose more weight? What over the counter meds should I avoid? Can I proceed with different exercise now? What other precautions should I take? Who do I contact to send a letter to my donor family? (Very important and sensitive question.)

I stuck with the bus and arrived at the clinic early. I had my mini laptop with me so I could go over changes for book two while I waited. Once I checked in, I sat in the lobby and was ready for a long delay.

But a nurse called me within five minutes. Wow, that's like, really fast. Oh well, more time to ask questions. I made my way to the hallway leading to the exam rooms. The nurse checking me in weighed me and took my blood pressure and temperature. All was well and I told her I was feeling great. I don't even know who she was. She may have been a post transplant nurse, but she was non-expressive.

I entered the exam room and instead of the surgeon who made me PROMISE to be back in six weeks, another doctor came in. She was tired looking and seemed preoccupied with other issues.

"Where's Dr. Olsen?" I asked.

"He's out of town for another three weeks." She answered as she glanced over my lab results. I sat there shocked.

"But Dr. Olsen made me promise to be here today to see him in particular. I guess seeing you is fine. As long as I was doing good, I don't have to come back for another three or six months." I hardly cared about seeing her, but I was disappointed as I did have some very specific questions for the surgeon.

"Oh, you will have to come back here in three weeks when Dr. Olsen is here. After all, you made a deal with him and you have to hold up to your end of the bargain." She was not interested in how far I traveled and how much money it cost me to be there.

"I'm not coming back in three weeks. I'm here today. I saw you. That has to be good enough."

"Oh no it's not," she reiterated. You made a promise to see the doctor.

"I know, and I'm here now." This became a debate and competition to see who would get the last word in. There was no longer any concern about the issue I had with sharp pain weeks before, my anti-rejection levels, lab work, questions I had for some of the staff. This was a test of wills.

We went back and forth a few times. I gave up on seeing any after-care nurses. There were none around and no one even asked me if I had any concerns. I eventually got into a tug-of-war with the doctor about how long before I came back and she finally agreed to let me schedule September 21. I wanted to wait until October even if I agreed to return. She tried for the beginning of September.

"Well this wasn't a fair deal," I complained.

"I met you half way," she insisted. And after all, you promised to come back.

When I confirmed the appointment with the scheduler, she said, "I'll make the appointment for September 21, but we don't really know if the doctor will be here on that day."

I grabbed my paperwork and walked out of the office, defeated. I'm not coming back in September. This is out of control. I walked to the back of the hospital campus to catch the bus to the apartment. An older, foreign speaking man tried to peddle some gold jewelry on me.

"I ain't got no money for you. And I don't want no jewelry. Do you think I'd be waiting for the bus if I had money to give you?" He walked to the next person with his hand open. I was foul. I was not in the mood. The disorganized mess from the transplant clinic staff, the doctor insisting I simply return in three weeks, the oppressive heat and humidity, and the constant harassment of city peddlers, caused me to disdain anything in my path.

I had some salad for dinner, called my husband and vented, and tried to sleep so I could be ready for the trip home in the morning. Even that was a disaster. Storms delayed flights and the roof at the airport was leaking badly so that there were basins everywhere you walked. It was a zoo.

Yes, I made it home safely. No, the trip was not productive. Yes, I was aggravated. But I had to let it go. I will not allow the frustration to fester. I will cancel my appointment until this mess gets straightened out. I hope it does.

Author's note: This post is a bummer. A good sign to get off the Chicago topic. 8^) I am doing great and will put this saga to bed.


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

Soggy in Chicago

Way cool light show through
the O'Hare Airport Tunnel.

Wednesday
7-27-2011

Okay, so after a while, I'm going to have to take a break from these Chicago posts. Well, actually, I don't plan on going back unless some things change with the transplant clinic. Oh, I want it known and understood that I absolutely, unequivocally, love and appreciate and love the surgeons who gave me a chance to live free of diabetes and extend my life. They ROCK!

But at the appointment I had on June 10th, a day before I left to come home to Spokane, Washington, I was made to promise cooperation with the requirements set forth by the head surgeon in order to release me to go home. I did.

So on Thursday, July 21st, I traveled out to Chicago, saved money by taking the train from O'Hare to the city, (of which the air conditioning was broken and we were all dying of heat stroke) messed up my connection, and was left at Wall and Randolf St., two miles from the apartment I was staying at. And ... the temperature was 99 with a heat index of 115 degrees.

I was in travel clothes which included my jeans, had a heavy backpack to tow, and once again luggage to pull. I can do this. The exercise will be good after being on a plane. So here I was, roaming the streets of Chicago lugging luggage--again.

After the first mile, I was sweating so bad the water dripping from my face and hair blurred the GPS on my phone. I had to keep stopping to wipe the sweat from my glasses. I came upon a Baskin and Robbins and stopped for a scoop of ice cream and a respite in air-conditioning. I can't make the other mile. What to do now?

My watch displayed 4:50 PM. I called Lenee--the angel a couple of posts back. "It's perfect timing," she announced. I get off work in a few minutes and pick you up and bring you to the apartment. But I can't stay--have to get my daughter to soccer practice."

"That's fine with me. I'll wait on the corner."

Sweaty, armed with a backpack and suitcase, and dressed inclemently in jeans and a long sleeve shirt, I leaned on the corner pole. I'm pathetic.

Lenee arrived and dropped me off. I took a shower and changed into fresh clothes to settle down for the night. The complex had dinner to purchase from area restaurants that came on Tuesday and Thursday. I got pot roast and veges and called John to let him know all was well.

Again I appreciated a free place to stay, but this time was really tough. The apartment brought back scenes of lonely days and nights, the couch a reminder of how many days post surgery I laid on it weak and sick, and the memory of paramedics collecting me onto a stretcher when I had semi-passed out from a 104.5 fever. No worries--only a few days to stay here. I didn't fall asleep until 3:00 AM.

Friday morning, I got up early and had to catch the bus at 8:20 AM. I was exhausted but had to go get blood work for the afternoon appointment. I took the train back so I could stop at Starbucks and get an ice coffee--a large ice coffee. The train conductor announced there was a dangerous storm moving in with hail and dangerous lightening.

We arrived at the Clinton St. Station and I made my way down the gray, dirty steps to the street. I saw the storm getting close but figured I had time to get coffee and walk the four blocks to the apartment. Not. I waited on a short line and by the time I was handed my Venti, Iced Latte, 2% Milk, SF Vanilla, the storm had arrived.

A few buildings shielded me for a while but then the fierce rain pounded my unprotected self. I watched people's umbrellas fly away and did my best to run for the building. Once inside, the extreme air conditioning froze my clothing creating a pocket of cold air between my shirt and me. "I would have made it if I hadn't stopped for Starbucks," I joked out loud to the people standing in the lobby. No one looked at me or smiled. Such fuddy duds.

When I got up to the apartment, I laid my clothes on chairs to dry and took another shower. I had a few hours before leaving for my 1:15 PM appointment.

Next post: Oh why, Oh why, did I fly to the city, oh why, oh why, did I go?



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

Pulling a New York Look

Thursday
7-21-2011

After my testing the first day, I had to find another hotel. The Marriott was not a friendly place--price wise. A couple I had met at a Christian writer's conference a while back, had offered to help me and give me a place to stay. They did live more than an hour south of the city, but I called them that first day and they said they could come get me by 4:00 PM-ish.

When it was 4:00, I called them to check on where to meet and was disappointed to find out they changed their mind at the last minute. Oh wow ... now what?

This left me with only a few hours to find a hotel at the last minute again. President Obama was still in town. (I think he owes me $100.00 which was the extra charge for the Marriott!) The social services department tried to help me, but the hotels were all expensive. I was left with the housing I rejected the first dark, night, in the dreaded ghetto.

So I booked it for the next three days and trudged to the apartment building with my luggage. I followed my phone's GPS but found myself on an abandoned street in front of the old Cook County Hospital. It's walls were cracked and aged and it's appearance scary like an old murder film. I was cautious and kept looking around me. I saw one guy but didn't want to ask him directions; I looked like a tourist and it was dangerous to let on I was vulnerable. I know--I grew up in New York.

I found the building and recognized it from the night before. I had keys this time and after navigating the entrance, took the squeaky, smelly elevator to the third floor. At least I'm safe and can open the windows on the third floor.

Hangin' in the Hood

Once in, the room was clean but barren. The building was old and neighborhood right next to a country prison and the freeway with many abandoned buildings. My footsteps on the tile floor echoed until I opened the window to let some air in. The noise was deafening: sirens, traffic, honking, people yelling, fire trucks, ambulances...non-stop day and night. I kept the windows shut.

There was no where to walk to and get take-out food or groceries. I had some protein bars and the only thing in the snack machine on the ground floor was chips and cookies. Dinner that night was not fit for a diabetic trying to get a pancreas transplant.

The intersection across from the apartment

I was there three days and nights, keeping a chair wedged under the door knob whenever I was in the room with the door locked. Oh, I made it okay. But the environment was not healthy nor safe as I found out on day two.

After my testing on the second day, I found out there was a hospital a mile down the street with a cafeteria. I walked down to see if I could get a salad and some protein for dinner. I got an awesome salad and sadly, the only protein was typically gross hospital meatloaf. But it was better than chips and cookies.

While walking back, a man jumped out from an indented doorway and went to grab me. "Hey sweet sister. What ya' got for me?" And he didn't mean my salad and meatloaf. Two things saved me--A protective angel from God and my New York attitude.

I turned and looked at him with the most threatening New York look I could. And not the fake kind you imitate in the mirror. This look was, "I'm not in the mood and don't mess with me." And it worked. He backed off into his pitiful doorway hiding place and waited for the next victim.

Here's the doorway. The faces
have been blurred to protect the innocent (?)...

I walked the short distance to my apartment, face contorted with anger, and locked myself in my room. The salad was great but the meatloaf ended up in the garbage.

I vowed not to stay in that apartment again. Especially after I learned that POP, POP, POP were gun shots from gang battles nearby!

The next time I was in Chicago for the wait for a pancreas, a taxi cab drove me to my new residence in the city after I was kicked out of an assisted living home and had gone from hotel to hotel. (More later!) I watch the driver's route on my phone's GPS to be sure he's not taking me for a ride. Great to have technology.

When he didn't get off the right exit I started to panic a bit."Why did you pass the exit?"

"Oh, that exit," he pointed to. "I know another way around it. I'm a white cab driver in a white taxi. I don't drive through that neighborhood."

"That's where I stayed last time."

"And you're alive to tell it?"

I sat back against the vinyl seat, a bit disturbed but proud to have survived!

(Since then, everyone I talk to in Chicago is amazed I stayed there! Ha...they don't know the power of a crazed New York Italian!)

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

Stories from the Ghetto, Urrr...I mean City

Weds.
7-13-2011

It's such a pretty city...

Chicago was, well, an interesting city. When I traveled out there in April to have pancreas pre-transplant testing, the hospital provided a housing assistant to help me find affordable "housing." Their motives were sincere--their evaluation of someone like me staying somewhere like that was far from sane. And I had no idea what I was getting into.

The instructions for where to go were vague and I had never been downtown alone. While on the plane, I was thrilled to have WIFI for a sale rate of $5.00 for the flight. A sweet, dear friend from Arizona has a niece in the Chicago area and connected me to her on Facebook. Because I hooked up with her from the plane, we were able to exchange phone numbers and with short notice, she offered to pick me up from the airport and take me to the apartment complex. Thank GOD!

It was 9:30 PM and I was so grateful Lenee was willing to get me. It was out of her way to give me a ride. She had a picture of herself on Facebook and when I reached the luggage area I recognized her. I wanted her to just wait at the curb, which was easier, but she insisted on parking and coming in to get me.

What an amazing woman!

Once she drove me to the location of the "medical district housing," we both realized the area was part of a "ghetto" area in south Chicago. Not to call any area a ghetto, but it was not the right place for a short, stubby, white, Italian woman.

We drove front to back and couldn't figure out how to get in. I finally bypassed a resident coming out of the gated, iron, tall-fenced-with-sharp-pointy-tops, entrance area. I made my way inside, past an old guy sitting up against the wall smoking a but, and found a security guard--on his cell phone behind the counter, crouched down on the floor. I guess he wanted privacy.

"Oh no, ma'am, I ain't got no key." He fumbled to flip shut his cell phone.

"But I was told to come here and check in to room 314."

"I know nothin' about no key or no checkin' and the manager only works in the morning." He stood tall now, wanting to look like he was securing the premises.

I was glad Lenee insisted she wait until I got in. I walked to her car.

"I can't get the security guard to tell me what to do--he has no idea. And I don't like the looks of this place. I think I'd better find a hotel if you don't mind giving me a ride to one." Lenee and I both searched our cell phones for local hotels.

"Good thing I stayed," she assured me. "This is a bad part of town. You can't stay here."

Chicago. Now 10:00 PM on a Tuesday. President Obama was in town and so was the entire world--there was no room at the Inn for me. The only hotel with one room left was a Marriott. Lenee gave me a ride over and I assured her I would be okay. Because President Obama was in town and it was the last room, the Marriot charged me $279.00 for the night, before taxes and fees! BIG OUCH! But I had no other choice.

"I have something for you," she approached me with a gold, shiny box. "I was going to give this to a friend, but I knew I was supposed to give it to you tonight. I looked at the beautiful necklace and the words written on each charm: Faith, Hope, and Love.

We hugged tight and in less than an hour, I had a friend for life and an ANGEL to be with me in Chicago. Lenee saved my life that night. Could you see me lugging my backpack and carry on, late at night, in the well-known ghettos of Chicago? I don't think so.

So the cheap wireless on the flight, a dear friend from 20+ years ago in Arizona, her amazing niece, Facebook, cell phones with GPS, and God's protection, all worked out. 8^)

Never underestimate God or his angels!

Lenee - My Angel!

Tomorrow--the continued story as I find myself back at the ghetto for the next three days and find myself dodging an all out attack!

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

Cindy in Chicago - No Mo'

Thursday
6-23-2011

So everyone noticed that Day Ten of Freedom was my last post for quite a while. The next day, I ended up with John in a Chicago taxi at 1:30 AM on my way to the ER with a high fever of 103. I spent five more days in the hospital with everyone trying to figure out what was wrong with me. It was just this mysterious fever that comes sometimes after a pancreas alone transplant. I was sent home on a Saturday since all they were doing was giving me fluid and Tylenol.

Sunday morning, the very next morning, I woke up with a fever of 104.5 Walked out to the kitchen to tell John he needed to get me to the ER and passed out. John had to call 911. I was in another four days before getting discharged. We took the train home and as we walked back to the apartment, I had to stop and hug every other tree!

There is so much more to tell. I've been home in Spokane an entire 4 weeks today and tomorrow will be only 8 weeks since the transplant. I'm finally, for 2 days now, able to stand and move without wanting to pass out. So much to tell. I'm going to start posting again.

For now, I had a great weekend this past July 9-10. Here's some pics. 8^)

A relaxing swim!

Finally--sunshine!

Resort style dinner outside on deck: corn crusted Tilapia, vegetables from the market cooked Mediterranean style, fresh cantaloupe, and Timothy's decaf coffee.

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

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