Wednesday, November 19, 2008

Tera's Story

Hello, My name is Tera, I am the oldest of three siblings. I entered into this journey of life at the age of 33. I am a wife, mother and a medically retired paraprofessional and coach.

After leading an active, vibrant lifestyle, I suddenly found myself immobilized! As I try to think back to where this all began, it’s like trying to put a puzzle together. I remember the basketball season of 2004 getting short of breath while trying to run plays on the court. I had to stop running with them and just give directions. I went to the doctor , but he said it was bronchitis. I took the medication and it cleared up for a while. It was even harder for me to keep up with the kids in our classroom. I had to use the elevator to ge to the office, cafeteria and library. The stairs was taking everything out of me, turning my hands purple, and leaving me gasping for air.

It was on a cold day in January of 2005, I woke up feeling short of breath but I insisted on going to the grocery store with my cousin Stacey. While in the store, she kept asking me if I was okay. I told her yes because I didn’t want to upset her because she was expecting at the time. I went to my Mother’s house when I got home, Tiffany and Natasha was making pecan candy, they took one look at me and Natasha says something is wrong with you, your lips are purple. I then walked to my house stopping several times to catch my breath. I made it inside and my husband looks at me and says , to me , go sit down and I’ll put the groceries up. I went to the bathroom to look in the mirror but by this time I am completely out of breath , my lips hands and feet are purple. I can’t yell for Tarais so I call Averil from my cell phone to come and take me to the hospital. When she arrives at my house, she looked at me and said are you crazy, you will not die on me in my van. Tarais dialed 911, it took all but three minutes for someone to respond to the call. Gerilyn was an EMT on call that day, when she heard the address she responded to the call without waiting for the ambulance. I’m glad she did, she saved my life. When the ambulance arrived , all I remember hearing is we’ve got to roll we are losing her fast. Unfortunately the doctor in the emergency room said it was a severe asthma attack and that I could go home after several hours of taking breathing treatments.

Another month has passed and there is no change. I live in the lab having blood drawn, I’m having to call in sick on a regular basis and I’m missing most of our softball games because my hand can’t take the cold and I am in constant pain. I make another doctor’s appointment ,making sure that he understands that something else is going on other than asthma and bronchitis. By this time, I have to make an appointment with the dermatologist also because now I have ulcerated blisters on two of my finger tips..

It’s now March and my fingers aren’t healing. The dermatologist performs a biopsy on my fingers, he’s puzzled by the results of the test, he continues to treat me for my fingers but he insisted that I see my doctor because something serious is going wrong with my health. By this time I feel as if I’m on a roller coaster ride that just won’t stop rolling. I go back to the doctor again , this time he makes appointments for me to see a pulmonary specialist and a rheumatologist.

I’m in the office of the rheumatologist with thoughts running through my mind, if I can’t breathe than why am I seeing a doctor for arthritis . After my exam, I feel like I have been questioned by a lawyer and still have no answers. He sends me to lab of course and then to do a CAT Scan of my lungs.

It’s now May and my steps are getting shorter and harder to make and my lungs feel as though they are always going into spasms. I get a call from the rheumatologist to come in for a visit the next day. My Grandmother and I sit patiently in the waiting area, I’m thinking to myself I can’t believe arthritis can cause all of this. The nurse calls my name and takes us to the room, the doctor walks in and says Tera, I have bad news for you, you have a Lung Disease called Scleroderma. He goes on to say it’s uncurable but there is a treatment that can possible slower the deterioration of your lungs, he went on to say that he was sending me to a cardiologist because he was afraid that it maybe something wrong with my heart also. As part of a treatment plan he put in a request for me to take chemotherapy for my lungs. I looked at my Grandmother and I thought to myself, oh my God ! I’m going to die!

I’m driving home and I’m thinking of how will I tell my parents , my sister and my brother along with my husband and the rest of my family and friends that I have a life threatening illness that has no cure. My Grandmother sees the fear in my face and the tears falling from my eyes as she’s whispering a Prayer to God. She said to me , you know how to Pray and I taught ya’ll to depend on God for everything and right now is no time to Doubt Him.

It’s the end of July and I’m at my second visit with the cardiologist, he says that he need to send me for a test ASAP! The test was scheduled for August 3, 2005 , I walked in not knowing what to expect. My Mother (calm as she think she maybe ,until it’s all over then she breaks down) tells me to stop being nervous it’s just a simple test. Well let me tell you, that test landed me in a hospital room with tubes in my neck going to my heart. I had lay flat on my back and could not move for the next 24 hours. When I looked into my Mothers eyes, I could see that she had been crying. Later on I see my Grandmother and Averil walk through the door then my Tee Cheryl and Stacey(of all people, she cries when I cry), not long after they arrive my Godparents show up with this look on their face as if they know something that I don’t know. The next morning my doctor comes into the room and says my love, you have a very rare heart disease called Pulmonary Hypertension which has no cure. I’m thinking two life threatening illnesses with no cure, way to go Tera.

I’m two years into my marriage , just purchased a new home now how do I go home and lay all of this on my family. I felt like someone just ripped me open and had taken every ounce of joy from me and my family. I was empty , lost and in dismay. Never did I think that nothing could happen to me, I’m just used of taking care of everyone else, now someone will be helping me to get through the rough times.

The storm before the storm came on August 23, 2005, it’s my first day of chemo, my Mother and Grandmother was there to support me. I signed in and waited anxiously for the nurse to call me. When my name was called, I walked through the door and I started to tremble and the tears rolled down my face, just as I started to calm down, I heard a call for Code Blue. It was for a patient on the other side of the room. A team of doctors rushed in as if we were in a Trauma Unit. I thought to myself, if this is what chemo does to you , this is my first and last treatment. They put me in a room another patient since I was nervous. She said to me, baby cry if you want to because this is your life, but it’s not as bad as it seems, it gets easier every time you walk through that door.

Three days later we are packing up our home in Boothville, LA , headed for Amite, LA in the wait for Hurricane Katrina to make landfall , praying that she wouldn’t destroy our hometown. On August 29, 2005, our lives would change forever . I woke up to a power outage and I’m on oxygen and have no back up tanks. I had just started using oxygen, so I didn’t know who to contact. Every one in my family is worried about me, so I told them I was fine. As the days passed by , I could feel my breathing getting worse but I didn’t say anything. Finally , I got in touch with the oxygen company and they had an office open ten minutes from where we were. Thank God we got in touch with them we were out of power for three weeks . Some nights Averil had to drive me around town just so that I could cool off in her van with the A.C. running wide open freezing her. I felt sorry for her but my lungs surely appreciated the air.

Now I’m really feeling empty and lost I’m faced with health issues and the lost of my home and vehicle. I go to my rheumatologist for my checkup and he tells me that things are still looking the same and there is no change in my health. Well he lays another one on me, he advised me not to move back home for at least seven years because of the bacteria, it wouldn’t be healthy for my lungs. Now we are faced with having to make Amite, LA, our new home. I know that life takes us in many different directions and we must find the courage and hold on to Faith in God to move on, but at what point do I start to move forward. I continued to take chemo until January 2006.

On April 11, 2006 which was my 34th birthday, I went to visit my lung specialist. As he walked through the door, I didn’t see that smile on his face that he usually greeted me with. I asked him where was that smile that used to greet me with? He said Baby Girl we need to have a serious talk, so I said okay I’m listening. In the middle of our conversation he asked me to go home and get my business in order . I asked him what did that mean, he looked at my Mother and said to her, I’m giving your daughter 4 to 6 moths to live, those are my thoughts from looking at all of her test results, then he turned to me and said I’m only speaking from a doctors point of view I am not God, He has the last say. I took a deep breath to hold back the tears. On the drive home, I was very quiet ,my Mom on the other hand as calm as she seems, I could hear the fear in her voice as she talked with my brother on the phone. She looked at me and said it’s okay just live your life to the fullest, live each day as if it was your last day, enjoy your life. Every one took the news hard as expected. My brother came to visit one evening and I could tell that he had been crying before he came inside, he asked me, Tut how can you walk around with a smile on your face knowing that you might die, my answer was I had made Peace with God and whatever His decision was it had to be. But the truth of it was , I was living to die, I would wake up each morning wonder at what hour of the day I might die. I didn’t tell a soul because I wanted to feel brave, I felt that if I could hold my composure that I could keep every one else together.

On October 31, 2006, six months later I was rushed to doctor’s office because I wasn’t feeling well and my breathing was shallow. I was thinking to myself, Lord I know I’ve had six moths to prepare for this day but just wait, don’t take me yet please, I’m not ready. Dr. Ventura looked in my eyes and told my husband to turn the wheelchair around and head for the emergency room. They started working on me right away. My Mother showed up and my husband was torn apart, I don’t think they were much good for each other. By this time I knew that she was having a hard time excepting the fact that I was sick. Later on that evening, who shows up at the hospital but Stacey. Little did I know that she had called in sick and stayed home because she had felt that something was going wrong. I was of no help to her because I really thought I was going to die, it felt good having her at my side although all she could do was cry, I couldn’t talk to her so I just held her hand and we cried together. I found myself on a thirteen day stay in the Critical Care Unit at Ochsner Hospital .

The doctors were puzzled by what was going on because they couldn’t get a diagnosis from the blood test. They started sending blood work to doctors at universities in many different states. Non of the antibiotics were working and the oxygen was breathing 100% for me. Dr. Ventura came in and told my Mother that he was doing all that he could do but he was losing me. I had a deadly pneumonia and my body was not responding to the medications. I started praying Lord if you can DELIVER Daniel from the Lion’s Den, then Lord I know that you can HEAL me. Five days later Dr. Ventura comes into my room and says this must be a miracle from God because I had made a 360 degree turn with my breathing, they were able to turn down the setting of the oxygen.

I am currently taking a medication named Ventavis for my PH and it is working well, it has put me back on my feet. I Thank God everyday for my family and friends. God is my ROCK but they are my stand. They stand to give me encouragement every time I see that little smile on their faces when I do things for myself with some limitations but I count it all JOY! My Son is my sunshine, of course he is your average teenager, but I can get pass that. He’s always there when I need him, come rain or shine he’ s carrying oxygen tanks to the car, in the house, to the store and to Church. He’s even there to help with household chores, sometimes he complain but find me teenager that will not complain. My Mother and Grandmother to me is like a rose, their tears are like the petals once they’ve fallen and withered up the bush stands firm until it’s time to bloom another set of petals. My Father is quiet, but I can see the pain his heart endures every time I look him in the eyes. My husband won’t talk with me about how he feels, but he shares his emotions with other people when I am not around, sometimes I wish he would just say something. My sister is also quiet and won’t say much to me about it, but on the other hand, she still thinks that I should always do for her and think about me later, of course it’s why I love her, she’s my baby sister and I have her Spoiled. The kids in the neighborhood race to me when they see me outside, running just for a hug and a simple how are you feeling? Do you need help today?

God has blessed me to be able to attend a PHA Conference in Houston Texas in June of 2008. I was enlightened to have learned all of the information I did about living life with PH. It has changed my life completely, now I am inspired to raise awareness to other people about this Disease. I hope that in my endeavor to have a fundraiser for PH that I may change someone’s life forever. The support that I receive from everyone
Gives me a reason to FIGHT FOR A CURE!

In all that I go through, I know that God Will never put more on me than I can bear. Even when my clouds hang low I won’t complain because there is always somebody going through more than me. So I say to all Pher’s , family and friends when it seems as if it’s never going to end just STAND and let God see you through!


Cathy said...

You brought tears to my eyes!
You have been through alot. And I am so glad that you are doing so much better :)

Annette Markin said...

Tera, what an amazing and inspirational story! Thank you so much for sharing.
your phriend

Brandy said...

You are a very strong woman and sometimes I think I am too, but I must admit reading your story, you got some tears out me. I knew what was going on, but I did'nt know how severe it was. All I can say is keep on keeping on, and you will always be in my prayers.

Love ya, Brandy

Nancy said...

Dear Sweet Tera,
Thank you so much for sharing your story. My father has PH, and I'm having a hard day, because he's been having hard days. Frankly, I'm just really, really sad today.
However, the insights, perceptions, and openness you shared in your challenge-filled story were so helpful! I'm truly inspired by your deep faith and courage! You are both brave and beautiful! One of my favorite quotes by life coach Rhonda Britten is, "No one can be fearless alone." It certainly sounds like you and your family have figured out successful ways to support each other through your long and difficult journey. What lessons; what blessings!
I wish you and your amazing family an abundance of peace, joy, blessings, comfort, miracles, and the greatest of!
I'm so thankful I found your post!

With gratitude, prayers, admiration, and love,


Nancy said...

Dear Sweet Tara,
Thank you so much for sharing your challenge-filled story! Wow, you've really been through a lot! It's a sad, and amazing and inspiring story! Very touching!
My dad has PH and we've been through a lot over the past couple of months (actually years). He seems to be struggling more this week and it's really been tough. So, today, I'm just feeling really, really sad, but your story gave me some much needed encouragement and hope. Thank you so much for openness, insights, perceptions, and faith filled words of wisdom. It's just what I needed to read! I wish you and your amazing family peace, many happy moments, and above all (a miracle wouldn't be hurt, either). So are one brave and beautiful woman!

With gratitude, prayers, and love,


Jewell said...


God is in the miracle working business, Praise God!!! I'm standing on the Lord's promises for me to!! I live in the New Orleans Area and I'm in the process of going to see the Specialists at Ochsner!!! I will make it through with the Lord by my side!!! The Joy of the Lord is my Strength!! You keep walking in your healing girl!! What a testimony you have, keep sharing it!!!

Anonymous said...

God is great and you are his child. Thank you for sharing your story. It brought tears to this 33 year old man.