Friday, 20 February 2015

PHighter Friday: Amanda

On October 1, 2012 my life changed forever. This should have been the happiest time of my life. I had just celebrated my 3 year old’s birthday and had a 6 month old. My life should have been at its peak, but that all changed on that day.

For several weeks prior to that fateful day, I had been having what I thought was “panic attacks”.
I found myself completely out of breath. I thought that maybe I was suffering some sort of social anxiety because these attacks coming on mostly out in public. Slowly but surely they started happening at home. I was slowly unable to even walk 10 feet without feeling air hunger. I couldn’t get enough air in my lungs and was starting to get scared.

On the morning of October 1st my oldest son had a speech appointment just like he had every single week. I got up to go to the bathroom that morning and was so out of breath and was having horrible palpitations. This was starting to get very scary and annoying all at the same time. I made it back to my bed and called my Dad. I was in tears when I was on the phone and told him, “I just can’t do this anymore. I need to seek help for this anxiety.” I then called my son’s speech teacher and told her there was no way we were going to make it because I wasn’t feeling well.

After calling my kids were hungry and I hadn’t been to the store due to my “social anxiety”. So, I loaded up my almost 6 month old and 3 year old into the car. I started walking to my front door to lock it and BOOM. My sister found me laying on my front steps turning blue and lifeless. My husband began to do CPR and they called 911.

The next thing I know I woke up in the back of an ambulance and thinking, “this HAS to be a dream. Why am I here?” I woke up and thought that I had a stroke because I had post partum REGULAR hypertension. I tried moving my limbs and figured that I in fact didn’t have a stroke. I was admitted overnight to the hospital and they ran every.single.test known to man. I was released the very next day with a diagnosis of “anxiety”. I was told that I needed to seek some counseling and get on some Xanex or antidepressant ASAP.

My cardiologist wanted me to follow up with him the following day. I went in for a stress test and ECHO. The ECHO showed right ventricle enlargement. I continued to the stress test which I only made it through the first minute and a half before feeling like I was going to pass out and throw up. The cardiologist rushed in and sent me to get a CT of my chest ASAP. She thought that I was having a Pulmonary Embolism.

The CT came back that I did in fact have right ventricle enlargement that was consistant with Pulmonary Hypertension. My doctor told me NOT to go home and look up Pulmonary Hypertension. He said he would do a heart catherization to find out for sure what my pressures were. At this moment I didn’t think anything of it. I heard the word “hypertension” and thought, “oh, great, more medication so I don’t have a stroke.”

Of course the first thing I did when I went home was got on my computer and Googled,“Pulmonary Hypertension”. The first thing that popped up was the mortality rates. I worked myself into a real panic and thought there is NO WAY I have this disease. I am a healthy 27 year old who just had a baby. I have 2 kids that I have to care for and this isn’t happening to me, but it was.
Not only did I have this horrible and deadly progressive disease but now I was being told by every doctor that my dreams of having another baby were dead in the water. I would never be able to carry another baby due to the high mortality rates. This just added to my depression. I watched as my friends added to their families. I just began to sink deeper into depression.

In mid November I finally had my right heart catherization that showed my mean pressures were
65. I was diagnosed with severe pulmonary arterial hypertension. I spent weeks searching the internet for anything that I could find about this disease. I joined multiple support groups and researched and researched. I researched myself into a depression. I had this impending feel of doom. I was just waiting to have another attack and be laying lifeless on my front porch, except this time no one would find me.

In January of 2013 I was put on all oral medications. The handful of meds I was prescribed was; Letairis, Adcirca, Warfarin, and Lasix. I hated to take all these meds since I had never had to before but I know that they were the key to saving my life. So, I took them and hated every second of it. About 3 months later I had an ECHO follow up just to estimated my pulmonary pressures. At that time my pressures had gone from 65 to 35. My doctors were ecstatic to see such a difference. I think one of my cardiologist even cried out, “it’s a miracle!”

After having that ECHO my hope escalated! I became empowered by my sickness instead of feeling depressed about it all the time. I got a new lease on life. I decided that I will not let this disease define me. In fact, I will let it encourage me. In April 2013, I opened my own business with my Mom. It was something that I had always wanted to due but had pushed it to the back burner.

I continued my medications and kept on with my “New Normal”. No, I was never going to be the old Amanda I was going to be the PHighter Amanda now. It was battle time and I was ready to kick some butt. No more feeling sorry for myself and being down in the dumps. I may have PH but that is not who I am it is what I have.

In May 2014 I had another routine ECHO to check on my pressures. My pressures showed that my right ventricle was no longer enlarged and my pressures were at 29! I knew that I was kicking this diseases butt. I did what I wanted to do when I wanted to do it and didn’t let anything stop me. If I wanted to go run around and chase my kids at the park I could. I continued on with my business and made a cross country move with my family.

Finally, in December 2014 I had another routine ECHO since I had switched doctors. She also exclaimed, “oh this is amazing, this is soooo amazing!” My pressures were at 13 and my heart was doing great! She was amazed at the progress I had made in just 2 short years.

Currently, I continue to operate my own business, play with my kids when I want to, walk my dogs, ride bikes, clean my house for hours, and most importantly my husband and I will be starting IVF soon to have our 3rd baby via surrogacy. I am so excited about my life. PAH has become much less of a thought these days. The medications remind me that I do have a disease but if I didn’t have those I wouldn’t even think about my PAH.

A positive outlook on this disease has helped me heal tremendously. Many of the support groups I have joined have also helped me stay positive. Surround yourself with positive thoughts. I don’t want to get preachy but my motto this entire time has been, “God gives his toughest battles to His strongest soldiers.”

1 comment:

  1. Thanks Amanda, it was good to read a positive story about someone with PAH. I was diagnosed in November with early stage mild/moderate PH with right ventricle enlargement and I have had a stress echo since my first regular echo. The stress echo was actually pretty good. I have seen a cardiologist and pulmonologist and they want to do a a sleep study for possible sleep apnea and another echo in May. Neither Dr. has recommended any meds yet. I have few symptoms. Needless to say I was scared after reading the internet, but feeling a bit more positive these days, a little more testing to go and we will chart a course of action. Thanks again for sharing your story.
    Greg B.