HAPPY 20th OHS ANNIVERSARY TO ME!!!

Well yesterday was the day I had open heart surgery for the first time in my life. I was only 6 years old and I didnt know to many detail of what was happing. I know my favorite cardio dr came in and told me we were going to play ghost busters and momma had to stay here it was a game just for me. I actually walked into what I now know was the OR room and it was cold and white and my dr said I had to lay on the table and put a mask on to play ghost busters. That is all I can remember, I woke up in my momma's arms and I can remember saying I didnt play ghost busters I just put a mask on. I was just a kid then and thinking back was so funny to me now.

I do not remember to much about my hospital stay that trip I was always in the hospital when I was little but I do know that when I went home I could not attend school for at least a month or so I was home schooled. My class made all kinds of nice pictures for me. My teacher made me a really big poster with all my classmates handprints and their names, I still have all the things that was given to me durning my surgery recovery time. I have the teddy bears and a flower pot cat the old deflated balloons and cards my mickey mouse books.

It was hard growing up with CHD when I was little I did not know it was CHD i just knew I felt and looked different and kids were always so cruel to me calling me names. The only friends I had was teachers until High School I started meeting a few friends thanks to Band and ROTC.

I graduated High School when no one said I would I did it to prove doctor's wrong, I then went to college and graduated college when they said I would even be able to go to college.

I am proud of my CHD it has made me who I am today and I here to tell my story and help anyone else with CHD the best I can.

In honor of my CHD I am getting a CHD tattoo this week I am so excited to be honest not a tattoo person but I want something on me that represents who I am and what I stand for, and so people will say hey whats that and I can say CHD and tell them all about it.

I was about 7mths or so 

This was right before my OHS (you can see how pale I looked even with the make up dress up)

This was taken this year when the local newspaper ran my CHD story in the paper 

Whatever hurts you wont kill you its all but a dream in the end

I am truly sorry for the very long waited blog it has been a long time and I know that I need to at least update once a week.

So I will do HEART news first I am not sure if you guys know this but I finally got It's My Heart-Shreveport chapter going however I have not had the first meeting way to much stuff has been happing it is like I get up and start to work on IMH and Bam something happens. But that is the way things work I suppose you take the good with the bad it's just a part of life.  Hopefully I can sit down clear my mind and start to work on the first meeting this is something I really wanted but it seems it has just been a rough time here for me and my family.

My Knee I am still fighting with I have been going to PT for a while now, my knee is still extremly tender and sore on the inside of the knee I go back to ortho appt early oct.

Now onto personnal things first the past two weeks has been the weeks from Hell and there is no better way to put that. First we had a fire accident that was literally way to close to home. what had happend was our neighbors tree fell knocked down our utility pole split it in half and when the pole hit the ground cause a spark and the yard caught on fire. We are blessed that our house did not catch fire and that it did not go past the dog gate side. We were out of power for an entire week but everything is back on again and running the way it should be.

More personal battles with me something much deeper then I thought I would even discuss on this blog but I said to myself hey why not maybe even get some feedback on everything.
So most of yall know I had a great boyfriend and about two weeks ago we called it quits it all started over mis understanding and no one talking to each other. However since the break up so much stuff has come to the open and I listin to what all is said but in the end the only thing that matters is how I feel and what I think is going to be the best for me. I spent one week crying myself to sleep and hurting over this break up and I felt all alone and if it was not for my good friend "Boo" then I dont think I could have gotten this far. My mom has also been a great big help I have a few facebook friends who also tried to help me. Then I found out that a really close friend was suppose to be like my best friend had something to do with a few mis understandings in the start now of course I can not prove it but I do feel in my heart of hearts and that makes it worse my mama always taught me to go with my gut.

But enough of that I have decided last night that I am not going to wait around hoping and wishing things were right between us again as much as I would love them to be just sitting around doing nothing makes me feel worse. So I am doing more work outs still no running with the entire knee issue which sucks cause running has always helped me with thoughts so I just walk and I have an ab machine I will start on now and an cardio machine that I need to get started on it is filled with dust but I I know that my health and getting back in shape is my #1 goal for now if things are ment to be they will find there way back and if not its best not to keep it going only time will tell. I have to focus more on CHD anyway and my health and raising awarness for CHD is the most important thing right now.

Do not get me wrong I am still having a hard time with things but I I have to keep going at least that is what I keep telling myself.

I will try to blog more often then I have been

Physical Therapy for the Knee

This afternoon was my first Physical Therapy (PT) since my knee sururgy since almost 3 months ago. Let me start with what Dale my Therapist was telling me before we ever started the Therapy session. He examed both of my knees and mesaured both of my knees and then discussed options and out comes. Dale is a great Therapist really connects with patients and makes sure I am ok, but honstley I feel that has a lot to do with the stunt I pulled in 2009. Same Theraphy hospital just different Therapist however Dale was there the day I blew up on David. See what had happen was I was trying to talk to David and he wouldnt listen I told him if he bent my knee anymore he was going to break it yes the point was to bend the knee but you have to work it in there and not force it I have been through way to many Therapy session to know that, besides even Dale said forceing it makes it worse. So anyway back to the present time I will start with My left knee which is my good knee, Dale says anything past 100 on the scales of measurments can cause damage on knees and joints but he is not blaming me. The right knee went down so it put the left knee into over work mode and when I use full forse and log my leg while lifting I can stretch the leg 110 degrees. It may not be much now but he wants to bring it down to 100 or even lower. Dale told me today that my right knee will never be 100% and he is not even going to try to make at 100%.
 So Dale told me today that due to the fact that my misalignment of knee cap has been out of place for over a year before it showed up on x-rays  wait let me correct myself before I found a doctor that believe me and look for something. AnywaysHe felt around on the knee cap in general and what he feels from the direct knee cap he even made me feel it was strange, but the knee cap has been out of alignment for a long time and so therefore the knee cap got use to it being out of alignment. And after 1 year and 8 months of not being corrected its not so easy to just let the knee cap fall back into place. Now If the surgery would have been done within the first 6mth then it was have just slide right along. What Dale & I have felt you can feel that the knee cap was fixed however the knee cap is wanting to slide out of postion again, thats the way it has been for over a year. Dale said that he will promise that this will fix it becasue as of today the knee cap could go either way but as of 4:15pm this afternoon it was trying to slide back out of alignment. What Dale is going to do is stregthen my quads and joints on the knee but he said even that may not help. If that knee cap muscles or the knee cap itself goes any further then it will break, its not like a break you think its a break that will un do everything that was done in surgery. If that happens then another trip to the OR for me this time with a hospital stay and cutting deep into the bone and thats will be the mannual way of fixing a misalignment of the knee cap. But there is a little hope that PT will help its so hard to tell at this moment in time. ANother issue we have to watch is when you hold you leg up in a locked postion everything is suppsoe to hold itself up well my knee cap drops at a 2.5 degree, and anything over 3 means a cane or crutch for me for awhile or even forever, Dale says it is so close that if it drops anymore then he will put me on a cane. So we have to watch that as well has the knee cap.

But what makes everything more diffucult for me is my unkonwn chest tightness Dale was concerned about that and even made me rest between exercises whitch is why it took me so long in PT today he checks my blood pressue, pulse ox after each excercise due to my chest tightness.

I go to Dr Googe (Ortho dr) on Monday May 23, 2011 and I go back to PT on Thursday and maybe even Friday depends on how Thursday goes.

When It Rains It Pours...

I first want to go ahead and get the knee update out of the way, I will have my first PT appoinment tomorrow afternoon at 3pm. I am not certain if it will help my knee I mean it is the first appoinment since the 2nd surgery that was about 3 months ago. I am still having trouble with teh swelling in the knee, I go to ortho dr next week not really sure what will happen, I look for him to just keep me in PT for a while.

My chest has been having tightness for a while now and I get sent away from the adult cardio clinc. They just do not seem to care about my CHDs yes I have had a repair in 1991 but I still have 2 I feel they should be checked all the time. So my primary dr is the only one who is concern about the tightness and the new CHD, so he is sending me back to my peditric cardio dr, but I am not certain he will be do concern due to my age. But it is like I am stuck between the young & the old I am to young to go to adult and to old to go to peds. But If I could just get some type reason or findings from a dr.

So last wednessday I had to be rushed to nearest ER by ambulance because the tightness was getting tighter and the pressure and it was hurting when I was taking deep breaths. Well they started an IV and bag of fluids on the ambulance and gave me 6 baby aspirin and a nitroglycerin. Before I knew it I was in the hospital room. ER dr on call never found out what is causing the tightness. He ran my heart enzymes like a number of times but the only forsure thing is that I do not have any blood clots. He did say that there was something he said it could be scar tissue or the chest wire but he was un certain. So again here we go again with everything from tests and needle sticks.

There is a saying that people will often tell me they say Hang in there it wil get better but the truth is that it never truly fully gets better I mean maybe for a little whilebut then as soon as you think your in the clear something hits you right back down. But to tell ya the truth I am 25 years old I am use to it by now it is my life and there is nothing I can except get right back up and fight it again. I born into this world fighting for life so I guess I will keep fighting for as long as I can. I am a survivor and with god standing by myside I can do anything. I just get aggravted and annoyed at times it gets old after a while.

Mother's Day Weekend

Hello everyone this is Mother's Day Weekend 2011. I pretty much gave my mom her Mother's Day gift yesterday took her and my mamaw to dinner last night it was fun seeing my mamaw get out to go somewhere other then the doctor's office.

Since its Mother's Day weekend I would like to share a few of my favorite photos with me and my mom, and before I begain let me just say My mom is a very strong person, but any woman who will never give up on their CHD baby is very strong. I am truly blessed to have a mother like her she never once gave up on me and she never will she is the one who makes me fight for life all the time I truly do not know where I would be with out my mom.

The picture above was taken in 2007 at a Jo Dee Messina concert Meet & Greet and I was thrilled I was able to share that moment in time with my mom

I hope that all you mother's out their is spending time with their children and you cherish each moment with them. I  am not blessed to be a Mother yet well unless count 4 legged creatures then I am a mother to 4, 3 little cats and a dog.

I would like to give you folks an update on me for the last week I have been  having chest tightness in my chest, it feels like a 100lb weight is pressed upon my chest. I have been having these episodes for the last 3 years. I have been going to adult cardio doctors but they are not to concern about it however I am very concerned it comes and goes something must be cauding these pains. I go to peds cardio on may 27 so hopefully Dr. Jackson will know what to do and what test to run.

As far as my knee I have yet to receive a phone call to start PT I sure am wanting it to be very soon.

Sadly we lost another little baby with the CHD battle little Savannah was taken off machines yesterday at 7pm EST she was only 2 weeks old. Fly High Little one she has gained her angel wings and I am praying for her family.

When I hear of little babies & Children who die from CHD I often sit back and think about my life. It seems that we have been loosing many little ones with the battle of CHD. I cant help but ask why me, why am I here and they arent. I know we are not suppose to question the works of God but I cant seem to help it at times. From 1985-2011 you would think that with the advancements in times and technology things would change. And to think I did not have my CHD repair surgery until I was 6 years old. Many of sleepless nights for my family. But I am her to tell my story and as I always say If I can help just one person then it is well worth it.

An graphic I made for my mom last year she is a huge Aggie Fan and I am huge Vol fan My room is orange & White and her living room is in Aggies. But we have common bond with the SAINTS!

This is the most recent photo of my mom and me with my sister



Happy Mother's Day to all Mother's Everywhere

Random Congenital Heart Defect Facts

My Thoughts on Just about Everything

I first want to start by saying I hope evreyone had a safe and happy Easter this past weekend. Again Im sorry about my lack of not updating this blog, I have never been one to just sit down and write blogs. With everything I have delt with in my life I thought it might would help someone else, even if I can only help one person with my blog then it is well worth it.

I know that I started this blog mainly for CHD world, however my venting helps me more then anyone could ever know. So the last few weeks I have been doing some major thinking about different things and people and some thigns do annoy me but I have learned and I am still learning that I dont care what people think I am who I am and I am not going to change for anyone. If God accepts me for who I am then so should my so called friends or at least people who I have trusted in and became friends with. Then one day bam a big slap in the face and this was not the first time a so called friend of mine had did this to me. I personally do not care but the fact that it is over something stupid and then you go onto social networks and trash talk me. Its over so get over it. I will never understand why some people keep things going and why you try to get my other friends to not talk to me. It annoys me and I guess some people have nothing better to do but enough is enough just let it go.

On to the CHD world I must admitt the mouth of April has been the saddest month for me I have cried so many tears for our CHD Warriors who has gained their angel wings this month. I sometime wonder howcome I lived and the others didnt. I know we are not suppose to question God he does what he does for reasons we sometimes dont understand, but it is still very hard to hear about.  Lets all keep all the family's who have lost someone due to CHD in our thoughts and Prayer's and lets also keep in mind that those ones who have lost their life with CHD they will no longer have to suffer a life long battle of hospital stays, surgeries they no longer have to suffer and that is a good thing but still very sad.

I am still working with Children's Heart Foundation to get a Walk date set for CHD awareness some of it has been planned out. I will tell my story, talk about Pulse Ox Testing, and other common things in that nature I just hope we have a good turn out. I dont have all the date set just yet Im still trying to find a venue or area to do the walk this is what my hold up is, seems no one knows what CHD is and is not willing to listen, but dont panic I will find a place that my friends is a promise.

A brief update on me I will go to ortho dr the end of this month, my knee is still pretty swollen and causing some major pain, I am limited to what I am able to do at this time. When I went to see the dr last week he informed me that it will take anywhere from 4-6mths to even notice if the surgery worked, and 6-12mths for at least an 75% come back to my knee, so I will never get 100% usage back of my knee, a little upsetting but I have been through worse in my life.

Now as far as my heart goes with the new findings of a Tricuspid Valve Regurgitation, I am being sent back to my old pediatric cardiologist because the cardio clinic I have been going to they do not speacilize in CHD with adults that was born with CHD. I have a gut feeling Dr. J will call for a heart cath either way I think the fact That I dont know anything about the Tricuspid valve is what has me so up tight these last few weeks, the unkonwn is very scary. I mean when I had my OHS I was 6 and was told I was going to a room to play ghostbusters I did not know anything or what was happing. I am 25 now and a little worried but I guess that I will deal with anything once that issue happens. Then a months back one adult cardio dr had said something about going ahead and closing my PDA that has never been closed but why mess with something that is not even causing promblems. I will give updates towards the end of the month on this when I see both doctors both appointments are in the same week.