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I will give you a new heart, and put a new spirit in you; I will remove from you your heart of stone, and give you a heart of flesh.

Friday, May 14, 2010

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!

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