Oh...What A Night....

So I have not posted in a while, sorry. It may be another long one, sorry.

This past Thursday was a Great and bad day all at the same time. I had been having car trouble..so I had to take my car to have it looked at. Thank goodness that someone was doing a (favor) and was not going to charge me any labor fees.

Mean while I was waiting to hear about my friend Sarah who was in the hospital, we where expecting her to get out possibly...and that turned out to be a whole big hospital politics mess. Sometimes I wonder why people work at hospitals if they are not going to put the patients well being first!!!!
Sarah was finally released from the hosp and she also got some great news that her DNA testing came back negative! PRAISE BE TO GOD!!!!!! He is so unfailing!!!!!!!!

Anyway, finally around 2, I got my car..it turned out to be the camshaft thingy...we replaced it, and I have not had any problems since.

I had started putting on a little weight on Wednesday, so I was self medicating, and taking an extra lasix pill whenever I was up in weight. However this for some reason was not working and by Thursday night I was having back pain and shortness of breath, I checked my weight and I was up by 7.5 lbs. I called my dear friend Wendy (because I roll like that, you know don't call the doc first call one of your best friends..) I knew that she would tell me what I needed to do, which low and behold was to CALL THE DOCTOR BRANDY!!!!

So I called the on call doc, and he was with my doc... do you see how well God works!!!! So my doc said that he wanted me to go to St Lukes so that he could admit me and get me on some IV meds so that we could get the weight off, I really did not want to go, since I was here by myself with the kids, so he told me to take 3 of my lasix pills and if I did not start peeing gallons of fluid in about 2 hrs then I had to go to the hosp.

Well thank heavens, I started going to the restroom about 2.5hrs later. I lost all but 1 lb that night, needless to say I did not get that much sleep.

We had a camping trip planned and I did not want to ruin it for my family...sometimes I feel that I have ruined enough of our life over the last year, I do not want to ruin more...(yes, yes I know this is Satan talking and I have to banish him).
We where able to go camping, I started feeling quite a bit better by Saturday. Even though the heat was horrible. Glad I have the RV so that I can cool down.

Thank you all for the prayers the last few days, I know that they helped to make me feel better..

So today started slow..
I did not feel well this morning, so I went back to bed. I thought that it would not be a big deal, however Travis forgot his debit card, and came home at 10:15, and ofcourse I was still in bed. Something I try not to do.
I guess I feel that if he does not see me do this, then it is not so bad, after all he has to get up early and go to work. Sometimes I just can't avoid it though.
I do not want him to think that I do this all the time, because I do not!

The day got better, I had lunch with a good friend Jenny, and then I had two wonderful friends, Sarah and Taunya over at my house to visit. We had a good time. I loved watching Sarah's son laugh at my dog and cat. TOO CUTE!

Then I got to watch Lost, I am ready to see how this is going to end.

I am not feeling well again..it seems to be worse at night. We will see if I get any rest tonight.
I will be meeting with my friend to start working on my Angels in Action duties tomorrow, I can't wait!

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. 2 Corinthians1:3-4

Angels in Action!

So I have been praying that God would show me what he wants from me, to be obedient to his will .
Because as of now I can not do as much as I used to be able to do. I believe he has answered my prayers!

I am going to be helping with Angels in Action. This is a support group that helps people that have been diagnosed with Cancer.
I know that this is not the same disease that I have, but if this is where God is leading me to serve then I am there. I am so excited about helping!
I have been so blessed with all of the friends and support system that God has given me, and I would just LOVE to give some of that support and Love back to them!
Please pray with me that he will be able to be seen in me, and that I will be able to further his kingdom!

The Diagnosis

So Rebecca was going to her appointments, and of course I was going with her. They started asking questions about family members who might have heart problems, or if any had died from heart problems.
I told them that my father and brother both had a form of Cardiomyopathy, but that I did not know which one it was. (Later we found out that they have the exact same one as Rebecca).

As I was going to her appointments with her I started asking questions, because I was starting to have symptoms again. In October of 2008 I was referred by Rebecca's doctor, to a doctor at Baylor College of Medicine. (Dr. Franklin).
He ran so many tests, I think I was there all day. He came in the room and told me that I had a form of Cardiomyopathy so he was referring me back to Dr. Jefferies (Rebecca's doctor), because he was a specialist in this area.
So back to Texas Childrens I go at the age of 29.
He put me on meds twice a day, and for a while it helped.

In July of 2009 Rebecca and I had an appointment for both of us for a routine check. (The normal ecg, and echo). We had our appointments and then went home. Everything seemed normal. I got a call the following day and the nurse told me that after I left they looked back over my echo, and they saw something so they wanted me to go in and have a Cardio Catheterization done in the Cath Lab. This is where they go into your heart through an artery in your groin.
I went to St. Lukes the next week,on a Thursday and had the procedure done. Dr. Franklin was the one who performed the procedure. he came in after it was done and told Travis that there was a little bit of Hypertension so they where going to put me on Lasix, and I would need to follow up with my doctor the next week.

My follow-up appointment was scheduled that next Monday. I took the kids with me so that I could take the HOV lane. (since it was still summer and it was just a follow-up after all!)

I get in there and they make the kids leave and sit in the waiting room with a social worker, and proceed to tell me that I have a very rare form of Cardiomyopathy. It is called Restrictive Cardiomyopathy. It is caused by the stiffening of the heart muscle. It is not allowed to relax all the way so therefore when blood pumps back into the heart, it still has pressure in there and it starts to back up into the lungs, and can start to affect other organs as well.
They tell me that they want to refer me to another Doctor who has his practice at St. Lukes. ( I was already crying by this point). I do not know about any of you , but I was fond of my doctor and I trusted him. I did not want to change doctors at all!)
Dr. Jefferies told me that the new doctor could better serve me at St. Lukes, and that they would more than likely put me on meds, but that I would probably have to have a transplant at some point, since there was no cure for this disease.

I was dumbfounded...(wasn't this supposed to be a follow-up?)

I gathered the kids up and we headed home. I called Travis and told him what they had said. His reaction was that we needed a second opinion! Hadn't God already lined that up for us!! What an amazing God to already know what he would need to understand!
We where scheduled to go and see Dr. Kar two weeks later on a Friday. I would wind up in the hospital the Wednesday before that appointment. I had fluid on my lungs, and I was admitted under my new doctor. Dr. Kar.
They did a Cat scan, MRI, Echo, ECG...and then he confirmed on Friday that yes, I did have this disease, and he was putting me on more meds, and he wanted to see me in his office in two more weeks.

Waiting, Waiting, Waiting.....

We go to the appointment and he decides that he wants to have another Cardio Catheterization done, and depending on what he sees, he may want to put an ICD in my chest. (Impantable Cardiac Device).
This cardio cath was scheduled for Sept. 2, 2009....He decides, YES.. we need to go ahead and put one in just in case. So on the 3rd I go into surgery and they implant the device. They find a blood clot, and they also nick my lung in the process...(anything else..really.)

I would stay in the hospital for 5 days until the hole in my lung starts to close, and they feel safe letting me go home.

I would miss my son's 6th birthday while I was in the hospital. I would become severely depressed. But since then they have put me on meds to help with that.

I have had to go back in every month sometimes more than once, to see them, and have my meds adjusted. I get my blood done on a regular basis now, and I take about 8 pills a day.

My God is good. I am still here, and he will give me a new heart one day! Even better one day I will not have to live in this earthly body, and I will be whole!


I know that it was a long post.. thanks for listening!

Life before diagnosis

Travis and I where married at a very young age. I was 18 and he was 20. We where High School Sweethearts, and still are to this day, thanks to God!

We where married 3 years when we had our first child Rebecca Nicole, on 9/26/2000, she was 4 weeks premature. Even though she was early she seemed to be a healthy little girl.
When we showed up for her 2 week appointment the dr. heard some suspicious sounds, so he immediately sent us to have an x-ray done on her over at the hospital. The x-ray showed that she had 3 holes in her heart. 1 ASD (Atrial Septical Defect) and 2 VSD's (Ventrical Septical Defects). They got us in to see a Cardiologist that day, in Austin. This dr. told us that the VSD's would probably close on their own, but that the ASD would more than likely have to be closed in the Cath Lab (more on that later).

Rebecca went to the dr very often to get checked, she was put on meds for a little while, but they later took her off of them.
We lived a normal life other than a few dr appointments every now and then.


Three years later we had our second child Connor Jordan. He was born on 9/4/2003. He was also early, but he was 5 weeks early. He was born and his lungs where not formed all the way, however his heart seemed to be just fine!!! Hallelujah
Connor stayed in the hospital for 12 days before they let him out. We where so glad to have him home. He was completely healthy.

We moved from Austin to Nacogdoches in January of 2004 with Travis's job. He went to work at the corporate office of Elliott, he was the Training Manager.

I was working at a bank as a teller. I started not feeling well around March, I would get really light headed, dizzy, nauseated, and my hair would also fall out. I actually thought for a little while that I might be pregnant again. I was not.
One morning when I got up to go to work I was feeling really bad, but I really needed the money and needed to go to work. I got in the shower and while I was in there I had to get out and lie one the cold floor..I was so hot I thought I was going to faint. Finally it passed enough so that I could finish getting ready.
I got to work, got my money drawer, and then walked to the drive thru, which was not far at all. I got there and put my money in the money slot, my friend asked me how I was and I told her "I just don't feel" (that was the last thing I remember). I woke up later and the medics where there over me.

I would wind up going to the hospital, I would stay for 2 days, and they would find nothing. I would have no more problems for a few years.

Since then in October of 2006 Travis decided one more time to take a transfer with work. This time the transfer would take us to Houston, TX. (this was the one place that I always swore I would never live. I would go anywhere with him but here!) WOW...how the Lord works!
I am happier here than I have ever been!!!

We moved to Houston and I contacted Rebecca's dr. in Austin and asked for a referral to a dr. here. There was no reason to drive all the way over there when we have so many good doctors here. He gave me a referral, and I made the appointment, This appointment was to go in and see about closing up her ASD. The other 2 VSD's had already closed.

We got to Texas Childrens Hospital, and had the ECG, and Echo done, and they came in and told us that she did still have the ASD, and they could close it, however they found something else, and they where more concerned about it, instead of the ASD.
They told us what she had was LVNC Cardiomyopathy (Left Ventricular Non-Compaction Cardiomyopathy) I know long huh! What a blow to us, we had no idea. The doctor put her on meds twice a day and she has been fine. We keep a close eye on her to make sure she does not over do it, but she lives a relatively normal little girls life! Thank you Lord..

Do you see how the Lord had his hand all over this move so far.

Rambling

So as you can tell I have been playing with my blog thanks to my friends help! (Thanks Jennie) I have decided that I will back up a little in time with this blog. I will post more on that later. I am still learning how to blog so please hang in with me!

God given friends!

God has truly blessed me with wonderful friends! Today I had the priveledge to spend most of my day with my dear friend Sarah. She is so amazing! She talked me into starting this blog. so this is my first post. I will update the reason for the blog a little later. Sarah thank you for your friendship and listening ear!