After a lengthy discussion with a wonderful woman I have decided that I only need positivity in my life. No negativity. This journey is one that I thought would never hit another speed bump.Over the past five days I have come to realize that this is only the beginning.I've had more scary words & phrases tossed around in the past four days than in the past 4 years.
Yes it is scary. Yes I hate the idea of not knowing,but will I dwell on it? No,I will do my very best not to. Dwelling on it causes more stress and my body hates stress. Patience has never been my strongest strength but seeing as we won't know anything more until that CT is done. Then I can have another freak out.
No one wants to hear the words Heart Failure but the good thing is that my new adult cardiologist is staying on top of it. He's running the tests to see if in fact I am in heart failure and if I am how severe it is.Right now the only symptom I am having is fatigue.
Today the results from my bloodwork came in the mail and I was relieved to see that overall they looked good. I was mostly concerned about my liver & kidney numbers but those came back within normal range. The only number that was off was my BNP. This is apparently one of the tests done to detect heart failure. The BNP was elevated,but not extremely high which suggests to me that if I am in heart failure,I am in the very early stages of it.
So I am going to try not to worry until the CT is done and the results are in.
Thank you to everyone who has offered to listen to me vent,offered to bring me cookies and offered to come down to see me.
For right now life is on pause...
Friday, May 4, 2012
Wednesday, May 2, 2012
Echo Results
Well it looks like I'm headed for left sided heart failure. Why the hell did cardio not mention this on Monday? Oh and I have another Aortic Aneurysm.
I got all this news from the echo report that they sent me today. Technically it said Indication: Left sided Heart Failure but really who pays attention to stuff after reading that?
I got all this news from the echo report that they sent me today. Technically it said Indication: Left sided Heart Failure but really who pays attention to stuff after reading that?
There were a few more things indicated in the report but nothing as major.
I had an Aortic Aneurysm repaired when I was 19 but now it
seems I have another one. It is 3.2cm. So not terribly huge but still
concerning. The plan now is to get insurance to approve the CT and then get it
scheduled and have it done. After that we'll have some sort of plan.... I hope
Maybe the CT will show that the Ejection Fraction isn't under 50. Maybe it will show that left sided heart failure is not a possibility.
I just want to see the results...
Tuesday, May 1, 2012
Waiting
Just a quick update...
I had no idea how nerve-wracking waiting could be. When I was having issues before I was 19 and my mom was still shouldering most of the information and details about my care. I don't remember the waiting for the scans or the cath or the surgery being as anxiety-provoking.
I had no idea how nerve-wracking waiting could be. When I was having issues before I was 19 and my mom was still shouldering most of the information and details about my care. I don't remember the waiting for the scans or the cath or the surgery being as anxiety-provoking.
All I know is that Cardio is anticipating a fight with insurance to get the Cardiac CT approved. This particular CT is not really a diagnostic tool in my case but hopefully Cardio can spin it so that it is approved by insurance.
Waiting for that is so anxiety-provoking. I just want to have a date set for the scan so we can have the scan done and get answers as to what is going on and see if I need to be on meds for the decreased left ventricular function. My guess is that since I am not symptomatic,that I will not be put on meds and we'll just keep a close eye on it.
Oh and if ONE more person asks if I need a transplant,I may lose it. I am already scared and the idea of a transplant scares me to death. Sheree,Ashlea & Katie A, I am not talking about you guys.
Right now I just need prayers,positive vibes,hugs and love from everyone. I am going to need you all as I embark on this unchartered territory.
Tomorrow I should receive a copy of my echo results so after I make sense of those I'll probably write a blog post about them as well.
Heart hugs and much love to all of my faithful readers.
Monday, April 30, 2012
Not what I expected...
Today did not go how I expected it to go at all. I had mild anxiety over the cardiology appointment that was scheduled for today but I was SO used to hearing "You look good.See you in six months" Words that my pediatric cardiologist uttered every six months. Even so I brought a notebook full of questions to ask my cardiologist. Only 2 of them got asked because we spent most of our time going over exactly what the echo showed him.
The first thing he said was that he saw nothing catastrophic. I was glad to hear that but then my mind shifted to "Oh shit he did see some changes!" Then he went on to explain that my left ventricular function has decreased and it's now at 45-48% I have never had good left ventricular function so the fact that it has decreased scares me. I have a call into him to ask what the last percentage was so I can compare the two. He also said that I have right ventricular hypertrophy because the right ventricle is having to overcompensate for the decreased left ventricular function. He also told me that I have a residual VSD that is restrictive. He assured me that was a good thing.
He wants to do a Cardiac CT scan so that he can check on the conduit more fully and also give me a definitive answer on why my blood pressure is so different in each arm (My theory is that the BT shunt is the reason behind that) Right now it's just a lot of guesswork. The good thing is that if necessary I can be put on meds for the Left Ventricle. He does not believe that the tiredness I have been experiencing is cardiac related but we'll know for certain after the Cardiac CT.
I'm scared to death right now. I know a CT scan ISN'T a big deal but I guess I just got complacent and I believed that I was done having issues. Stupid I know. I've been pretty much in shock most of the day and now I am desperately trying to stay calm even though I just want to cry.
Today sucked and it needs to be over :'(
The first thing he said was that he saw nothing catastrophic. I was glad to hear that but then my mind shifted to "Oh shit he did see some changes!" Then he went on to explain that my left ventricular function has decreased and it's now at 45-48% I have never had good left ventricular function so the fact that it has decreased scares me. I have a call into him to ask what the last percentage was so I can compare the two. He also said that I have right ventricular hypertrophy because the right ventricle is having to overcompensate for the decreased left ventricular function. He also told me that I have a residual VSD that is restrictive. He assured me that was a good thing.
He wants to do a Cardiac CT scan so that he can check on the conduit more fully and also give me a definitive answer on why my blood pressure is so different in each arm (My theory is that the BT shunt is the reason behind that) Right now it's just a lot of guesswork. The good thing is that if necessary I can be put on meds for the Left Ventricle. He does not believe that the tiredness I have been experiencing is cardiac related but we'll know for certain after the Cardiac CT.
I'm scared to death right now. I know a CT scan ISN'T a big deal but I guess I just got complacent and I believed that I was done having issues. Stupid I know. I've been pretty much in shock most of the day and now I am desperately trying to stay calm even though I just want to cry.
Today sucked and it needs to be over :'(
Sunday, March 25, 2012
Life Lessons
So yesterday I got a message from someone who at one point I considered to be one of my best friends. About 11 months ago we had a major falling out and we didn't speak for a LONG time. So you can understand my surprise when she messaged me. Honestly I had to sleep on it. I wasn't sure if I was going to respond at all. In the months after our falling out I was so angry at her. Angry that she had caused me to question the reasons that I was in the heart community.
So last night I prayed on it because my head and heart were at war with one another. God pushed me in a direction that I was terrified to go in.
I messaged her this morning and throughout the day we have been exchanging messages. In the last 30 minutes I have sent her a friend request and she has accepted. We both realize and accept that it will take awhile to get our friendship back to what it once was but we are both willing to take the time to fix it.
Sometimes second chances aren't earned but when they are earned,you owe it to yourself and to the ones you've been wronged by to give it a shot.
So last night I prayed on it because my head and heart were at war with one another. God pushed me in a direction that I was terrified to go in.
I messaged her this morning and throughout the day we have been exchanging messages. In the last 30 minutes I have sent her a friend request and she has accepted. We both realize and accept that it will take awhile to get our friendship back to what it once was but we are both willing to take the time to fix it.
Sometimes second chances aren't earned but when they are earned,you owe it to yourself and to the ones you've been wronged by to give it a shot.
Monday, March 12, 2012
What I have learned in the last 24 hours
Liam is one lucky little baby. He has a mom that fought for her child from the beginning. He has a mom who demanded that the pulse ox test be done and she refused to leave the hospital until the test was done.
Thank God for her determination. She likely saved her baby boy's life.
Yesterday I got word that Liam had been transferred. I was getting conflicting reports so it was about an hour before I was able to verify that yes he had been transferred for two reasons. 1, the small rual hospital he was born at did not feel comfortable in treating his complex case. 2. His mother wanted him at a children's hospital.
They remained in the same state,thankfully and his mother was able to ride with him in the ambulance to the hospital. When they got to the new hospital he was assessed by a pediatric cardiologist who deemed it necessary for him to have his Norwood this morning.
Surgery started shortly after 9am and by 1:30pm Eastern time, Mama was being escorted to the PICU to see Liam. Surgery had gone very well and Liam was doing well. The surgeon was very pleased with how it had gone.
I know many people have asked where he had his surgery/where he is right now,but Mama has not given me that information yet. Her friend says that she is very private.Especially when something serious is going on. So please continue to pray for this sweet baby boy and his Mama.
Thank God for her determination. She likely saved her baby boy's life.
Yesterday I got word that Liam had been transferred. I was getting conflicting reports so it was about an hour before I was able to verify that yes he had been transferred for two reasons. 1, the small rual hospital he was born at did not feel comfortable in treating his complex case. 2. His mother wanted him at a children's hospital.
They remained in the same state,thankfully and his mother was able to ride with him in the ambulance to the hospital. When they got to the new hospital he was assessed by a pediatric cardiologist who deemed it necessary for him to have his Norwood this morning.
Surgery started shortly after 9am and by 1:30pm Eastern time, Mama was being escorted to the PICU to see Liam. Surgery had gone very well and Liam was doing well. The surgeon was very pleased with how it had gone.
I know many people have asked where he had his surgery/where he is right now,but Mama has not given me that information yet. Her friend says that she is very private.Especially when something serious is going on. So please continue to pray for this sweet baby boy and his Mama.
Friday, March 9, 2012
Pulse Ox does save lives
Today was a very humbling day.
Early this afternoon I spoke with a friend and found out that someone we both knew had recently had a baby. Baby Liam was born 2 days ago. He was a healthy size and he was pronounced healthy by the doctors. They were going to be discharged tonight. Then the friend of the new mom told the new mom about the pulse ox test and urged her to have it done before Liam was discharged.
The new mom spoke to her nurse about it and the nurse said that Liam was healthy and he didn't need it, But Mama persisted and spoke to the doctor. The doctor echoed the nurses' statement. Finally after a lot of reluctance from the doctors and nurses,Liam was given the test.
Imagine the surprise when the 02 reading was 83. Liam was immediately taken from Mama's arms. Cardiology was called and after the pediatric cardiologist on call listened to Liam and preformed an echo,it was determined that Liam had HLHS or Hypoplastic Left Heart Syndrome.
He will be facing his first of at least 3 surgeries with the first one,the Noorwood, scheduled for Monday.
Without gaining the knowledge from a dear friend of mine, I wouldn't have known to share this information and Liam might have passed and Mama may have had to learn the diagnosis from the coroner.
Thank you Kristine for all you've taught me and all you and Cora continue to teach me.
Cora and I probably saved a life today.
Early this afternoon I spoke with a friend and found out that someone we both knew had recently had a baby. Baby Liam was born 2 days ago. He was a healthy size and he was pronounced healthy by the doctors. They were going to be discharged tonight. Then the friend of the new mom told the new mom about the pulse ox test and urged her to have it done before Liam was discharged.
The new mom spoke to her nurse about it and the nurse said that Liam was healthy and he didn't need it, But Mama persisted and spoke to the doctor. The doctor echoed the nurses' statement. Finally after a lot of reluctance from the doctors and nurses,Liam was given the test.
Imagine the surprise when the 02 reading was 83. Liam was immediately taken from Mama's arms. Cardiology was called and after the pediatric cardiologist on call listened to Liam and preformed an echo,it was determined that Liam had HLHS or Hypoplastic Left Heart Syndrome.
He will be facing his first of at least 3 surgeries with the first one,the Noorwood, scheduled for Monday.
Without gaining the knowledge from a dear friend of mine, I wouldn't have known to share this information and Liam might have passed and Mama may have had to learn the diagnosis from the coroner.
Thank you Kristine for all you've taught me and all you and Cora continue to teach me.
Cora and I probably saved a life today.
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