Just Another Day...

So last Wednesday Dr. Connors and Dr. Daud had me come in for another bronc. It should that I had indeed coughed up the hole plug and as of then there was no sign of scar tissue growth but that can take some time.

I arrived at the hospital at 7am and was discharged at 1130. Got to love when they can get you in and out of the hospital in a timely fashion. So mom took me to grab lunch and then it was home to sleep, or at least that was the plan. No sooner did I fall asleep Dr. Connors called me to tell me what he saw and what he believed the best plan of action would be.  The plan would be to go meet a surgeon at Barnes who has more experience with this than any other person in St. Louis. So I okayed it and hung up to try to go back to sleep. Again no sooner had I fallen asleep my phone was going off. It was Dr. Connors nurse Nancy calling to tell me that Dr. Patterson could see me that day if I had time to get down there. So I was up and out of bed and heading down to Barnes with my mom to meet the guy that was either going to make me really mad or make me feel ok about all this.

Dr. Patterson does not want to cut me open to fix the leak since I am not symptomatic. Instead we will try some other glues/jells to close the hole, and I will just stay on my antibiotic till something works.

So I will be heading to Barnes on Tuesday for yet another bronc but another non invasive try at patching this hole. I hope it works because I would really like to start working out again!

We will all just keep praying that it works and for all those that take care of me and my family.

I do have a couple prayer request

·         Little Miss Katie http://kellymanno.blogspot.com/2012/03/so-this-is-what-chemotherapy-looks-like.html?spref=fb

·         A family in our parish needs  prayers a mom and her 3 daughters are now dead… we may never know what drove the mom to kill them and then take her own life…. You think it will never happen to someone you know… So sad… life is so precious

·         For all those in the medical field that they remember that there patients are not just the symptoms or syndromes that they have but they are PEOPLE with FEELINGS.

Thank you so much and until next time love and prayers,

Em

HEROS

Sometimes you just need to stop and thank God for for all the people that he has put in your life. I am not the person I was yesterday, but I am an ever changing person who loves LIFE and the people that have come into it! Thank you for all the lessons learned!

"You don't have to be a 'person of influence' to be influential. In fact, the most influential people in my life are probably not even aware of the things they've taught me." Thanks for teaching me so much without even trying!

        I just wanted to send a little note of thanks to all my heros and teachers! I want you all to know that I pray for you every day. I will never forget what you have done for me and for that I am grateful.

Without you I would not know compassion, empathy and love like I do now. You are truly an amazing and I am so very lucky to have had you in my life! I wish you greatness in all you do! And I look forward to the next time I see you again!

 Dr. Huddelston and I. This man operated on me 4+ times and because of his skill, compassion and love of children I have a better HEART!

 Dr. Sharkey and I. This woman was my cardio doc while I was at Children's and I didn't feel like just another paitent but a part of her family! I love this woman and what she has done for me!

 

Dr. Connors, Me, Dr. K and Dr. Mauney. I challenge these surgeons all the time and I even get mad and test them in other ways but they are always fighting for me and making sure that I am getting the best!

I cannot find my picture of Dr. Braverman but he really is the man behind all the love and support I get. He is my cardio doc a true Hero. He knows his stuff and stays informed and on top of Loeys-Dietz Syndrome information!

I really am so blessed to have all these people in my life.

I hope to have pictures of me and some of the wonderful nurses who work so hard to keep me happy and make sure that I am doing well! It is so nice to know that there love and support is always present. I am one lucky girl!

"If you knew me yesterday, please do not think that I am the same person that you are meeting today. I have experienced more of life, I have encountered new depths in those I love, I have suffered and prayed, and I am different."

These are just a few of the many HEROS in my life so stay tuned and you can meet some more!

Basketball Anyone?

This weekend I spent most of my time cheering on my 11 year old brother and his friends as they took part in a basketball tournament. This is one of those dream teams where every player brings something unique to the court and they all work together to make their talents shine!

                                         It all started back when these 2 were in preschool.

They had indoor recess because it was raining outside. My mom came to pick up Nathan that day from school and the teacher told my mom that she believed Nathan and Jake would be some pretty good basketball players someday… Well what do you know?

After beginner leagues, YMCA training camps, and a lot of practice they met again on the court each bringing a few buddies that loved the game just as much as they did and 2 very awesome coaches. And before we knew it they were winning game after game, learning knew plays and even some tricks. And one year turned into two and two into three and year after year they WON every single game they set out to play. They have talent, they have WILL and they love the SWEET taste of VICTORY!!!  They are always a fun group of boys to watch always respectful to their peers and each other and always excited and willing to listen to what the coach wants to tell them!

So this weekend after the season was over and they enjoyed a week of they hit the courts for a tournament. And sometime when you beat teams that you think are hard you let down your guard and you don’t play with the need to fight to win…. Today these boys lost their first game ever… it was hard on them and hurt but I have never seen a group of boys like them… they lined up said their “good game” to the other team then turned around and pated each other on the back. They have nothing to hang their heads for. They played hard and they played well and everyone knows as hard as you try you cannot always WIN THEM ALL.

Nathan, Matt, and Simon on the bench getting my guess is a pep talk from coach Gary reminding them that even though they could not win this game that it was okay to be upset and disappointed but it was a great weekend and they played hard and showed great effort.

So to my Rockwood boys thank you so very much for the memories and keep them coming! You had a great season and you all played with heart! Way to always play unselfishly and as a team! You all bring so much to the court and I look forward to watching and cheering you all on again next year!

                                  2nd place isn't really so bad when you have great friends to stand by

The Little Things

Sometimes the best parts of life are those little things that we don’t always notice… Like the love of family, and friends. A warm meal, a place to sleep when you are tired and just the simple joy of the chance to live another day!

Had a very busy day at work but came home and had dinner with my family and then celebrated my sister’s junior ring…. My little sister isn’t so little. It is hard to believe that she will be a senior next year and then college and finding her place in this world. She also isn’t so little in fact she is much taller then I and a beauty beyond all beauties. I may complain about her but I love her more than anything. I am so excited tonight got to be about her. After all I go through with doctors, test and surgeries sometimes the sibs get left in the dark. Not tonight! Tonight Anne shined bright!

What a wonderful evening! Remember it doesn't have to be over the top to have meaning! The little things like being with family can be the best times.

Just Take One Day At a Time

This is something I wrote back on January 24, 2012 one year after my left lung was removed. I am not sure if I want to work backwards or start back at the very beginning so for now enjoy!

I cannot wipe the smile off my face! From the moment I woke up today I have been so happy and full of life.

Today is the one year anniversary of the day my family, friends and I went through hell. Today is the anniversary of the day my life was forever changed. I now have one lung. And on this day a year ago and the days that followed I fought like hell to get where I am right now.

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”

I am not 100% yet but I am so much better than I was a year ago, Who could have imagined where I would be after that awful week. I hear stories about that week and think "wow my body was tired but, my soul, my strong soul was not going to give up."

I try to choose to live everyday to the fullest to make the most of what I have today... I am human though and I have bad days but those days seem to be far and few between. Today after work I couldn't help but pick up the phone and call my surgeon and thank him for helping to play a part in changing my life. I didn't get to talk to him but I talked with his nurse and she was so happy to from me and said she would be sure to let Dr. K and all the guys (Connors and Mauney)  know that I called to say Happy 1 year!

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place."

I do still have memories that come flashing back about that time in the hospital... they are mostly ok thoughts  like the day that I had the breathing tube removed for good... I remember my 3 visitors that I actually got to talk to... my cousin Diane, my dad, and dr. Rinder. Then we had a big winter storm and I didn't see anyone for a day. and then there are the memories I wish I could forget like lying down in the CT scan and not being able to breathe that's when I knew whatever was wrong with me was bad and then I would forget everything till that day I breathed on my own. The brain is an amazing organ and it does a pretty good job of forgetting scary things. But since then life is good and I plan on it staying this way for a very very long time.

"Scars are just tattoos with BETTER stories." and I have a lot of them and I would never want to go through all of this again but I would NEVER change it. My bumps in the road have made me who I am today and I love the person that person!

"If you knew me yesterday, please do not think that I am the same person you are meeting today. I have experience more of life, I have encountered new depths in those I love, I have suffered and prayed, and I am different"

I want to thank first and foremost my parents for always being by my side. Taking care of me and loving me though everything... For what I have gone though so have you. My siblings I know that I put stress and fear in your young innocent lives... I love you both and am so proud to be your big sister. To my aunts, uncles, cousins and my whole family I love you and I know that I could not have gotten this far without your love and prayers. To my friends I would name you all but then if I forgot someone I would feel dumb I love you all and am so happy that you are in my life. To the doctors (new and old) both those that took care of me and those who just came in to spend time with me thank you. Thank you for answering God's call. Thank you for shaping my life and making me the woman I am today. To the nurses (new and old) thank you for showing me compassion and loving me as if I was one of your family members. I will remember your love and try to always pay it forward. To PT and OT thank you for being my support to lean on when I had to regain strength to walk and hold/pick up things... thanks for knowing when to push my harder and knowing when I just needed a pep talk of inspiration to restore my faith in ME.

They say it takes courage I say it just takes faith, prayers, and a whole lot of love!

Thank you everyone for being my prayer warriors, my cheerleaders, my support system. I love you all so very much!

Until next time love and prayers,

Em

"You don't have to be a 'person of influence' to be influential. In fact the most influential people in my life are probably not even aware of the things they have taught me."

Who I Am

At the age of 9 I had my first open heart surgery. I am now 26 and life and thrown me a lot of curves but not without me navigating my way though them. I have learned with family, friends, love, faith and the right attitude life isn’t so bad.

In 2005 I was diagnosed with Loeys-Dietz Syndrome and I hope to use this blog to teach others more about this syndrome and to also share with you my ups and downs and everything in-between!

Stronger is the name of my blog and the reason is really just the meaning of the word itself. Everything I have been though, everyone I have met, all the lives that have touched mine have made me the woman I am today. Although the road is rarely easy it is more than worth it!

This is the picture of my tattoo that I got March 1, 2012 the same day that I left the hospital! The date on it is 1-24-11 this is the day that I had my lung removed. And the word STRONGER!

WONDER

“Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation…”

It has been one hell of a couple weeks. On Tuesday February 21st I decided that it would be in my best interest to call the doctor and let him know that I had been having some breathing issues the night before. He started me right up on a dose of antibiotics and a steroid and told me to get an x-ray on Wednesday to make sure there was no sign of pneumonia.

Of course when I go get this x-ray on Wednesday I feel better but go anyway... In a matter of hours my lung doctor is telling his office to call me and have me call his cell phone... So I did... Turns out I have air in the empty chest cavity where my lung use to be (there is suppose to be fluid here). The lung that is not there has been nick named the phantom lung because even though it is gone it is still causing problems.

It was decided by Dr. Daud (lung doc) and Dr. Connors (one of my surgeons) that I needed to have a test called a bronchoscopy (aka bronc) This would allow then to pass thru my trachea to allow them to look at my right lung and stump (the piece that joins the airway when you have two lungs).So on Thursday the 23rd I got up at the crack of dawn to go have this test.... (I thought I would get to come home after).

When looking at my stump they found that there are little holes which explain why I have air in the chest cavity but the other question is where is the fluid.... My right lung looks good and is working great so all of this leaves us all puzzled. Where did the fluid go and why is this happening 13 months after the lung was removed?  So I was admitted to Missouri Baptist till Dr. Connors could figure out what to do... and let me tell you that took a lot of doctors from all over. They couldn’t seem to shake the fact that I was so healthy with no sign of infection and no symptoms except for that one night... I am use to puzzling the docs I just need them to remember that I am human and have feelings and needs and am NOT their science experiment.


Friday I was made NPO (no food or drink by mouth) the only problem with this was I didn't know why I was NPO until Dr. Connors came by at 3:30pm to tell me he was taking me to the operating room... WHAT? WHY? Turns out it was nothing he just wanted to go scope my chest (three little holes) that are actually driving me crazy. The reason for this was so that he could try and see the stump from this angle and check for infection. The biggest worry this whole time was infection because the air we breathe is not clean and if it is leaking into my chest cavity then it could damage other parts of me. Anyway there was no sign of infection and he couldn’t even see the stump do to scar tissue growth (this is a good thing). So my only issue was if I was ok with no infection why did he send me to the CVR (intensive care unit)? The answer.... he was just playing on the cautious side.


So Saturday I was back to the step down unit and this is where I sat Sunday, Monday and then finally on Tuesday night we had a plan. Wednesday I would head back to the operating room and get another bronc this time Dr. Connors was going to take a jell/glue substance to plug the tiny holes. He also "roughed" up the area around the staples that were already there trying to give the tissue a reason to have scar tissue grow.

The procedure went well and that night when he came by to see how I was doing I kicked my parents out of my room to ask him a question... and I love how this question caught him off guard. "Dr. Connors, can I get a tattoo.... you know while my INR is at a safe level and I am on all these antibiotics?... you see I've never really been a rebel and I just want this one thing that means the world to me." "Of course you can Em, that is fine.... can I ask what you are going to get?"

So Thursday night after I had been discharged me and three of my friends headed out to the Delmar Loop so that I could get inked. I love it and am so very happy with the way it turned out!


I also had the Gala this weekend! I love seeing all my doctors outside of the hospital. It's a great time and a wonderful way to get to know them and their families.... see that they are human too!! I think the best part was seeing my surgeon from Children’s Dr. Huddleston he is an amazing man and has done so much for me and taught me a world of things without even trying! I love him!

I did cough up some of the "plug" but I am not having any problems so I will go Wednesday to get another x-ray and get my stitches out and then from there Dr. Daud and Dr. Connors will decide when I need to come back and have another bronc.

Today was back to the grind of life and I love it! All though I not out of the woods on this matter this is so minor compared to everything else I have been though these past can you believe it almost 2 years!  Thanks for all the prayers and love and sweet comments know that you all are always on my mind and in my heart!


Until Next Time Love Me,

Em

“O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation…”