ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel
  • »
  • Health»
  • Diseases, Disorders & Conditions

Pulmonary Hypertension Journey Through Sickness, Hope and Faith

Updated on June 30, 2012

When I first came here in the United States, everything was going great. My husband and I got a good job, kids were in day care and I had a happy life. However, a life-threatening situation changed my world upside down.

One morning I had fallen sick with a high fever that caused cold shivers down my body. First we had thought it was just a regular flu and will go away soon. Day after day passed by and my condition got worst. We did not have insurance at that time which also heightened my fear. Just one week short of getting insurance, I went to my doctor and they diagnosed me with serious pneumonia and right away admitted me into the hospital. After all the testing was done, I came to find that I had interstitial lung disease from the pneumonia because it scarred my lungs. I never breathed like a normal person again after that day. Since I had no insurance the bill came out to be more than 3k.

I kept going to the doctor every month and took breathing tests, CT scans or EKGs. During those intense doctor visits, I was additionally diagnosed with Scleroderma and Acid Reflux. At this point I was only on medication Methotraxate, prescribed by my Rheumatologist.

My Beautiful Baby Girls!
My Beautiful Baby Girls! | Source

As time went on, I started to experience shortness of breath which caused me to have difficulty in walking. I felt dizzy all the time, and it was hard for me to juggle my job and take care of my two young children at the same time. I almost fainted one day while going up the stairs. Luckily my husband was there and took me straight to the ER. After all the testing came out, I was told I had developed a serious life threatening condition: pulmonary hypertension. I came out of the hospital with tons of medications such as Revatio, Tracleer, Digoxin,Deltiazem and big tank of oxygen to remind me of my suffering had just begun.

I still remember the doctor telling my husband “I wish I did not have to inform you that she has pulmonary hypertension. She has a very short period to live, hypertension life expectancy is only 3 years.” We cried the whole night in each other’s arm, I said sorry to my husband for giving him this pain that he will carry his entire life. We had many dark nights after that. Imagine living your life for three whole years knowing that you could die any minute.

After that day I realized that life should be remembered by the memories you live, not by the days you live it. People are dying every day without even realizing that morning that it was going to be their last day. Therefore, from that day foreword I refused to let the doctor’s words get to me; I was going to live my life to the fullest. I was told to quit my job and stay home. I refused to quit. The job was the place where I could relieve my stress and keep me busy.

My Family At sea World
My Family At sea World | Source
My girls and I at sister in law`s house.
My girls and I at sister in law`s house. | Source
Family  and I.
Family and I. | Source
My family and I,  Girls were growing up watching me getting sicker everyday.
My family and I, Girls were growing up watching me getting sicker everyday. | Source
Aww! My girls are grown up now.  They love me so much. I am so proud of them.
Aww! My girls are grown up now. They love me so much. I am so proud of them. | Source

In 2004 I had to enroll for a Lung Transplant which was a very scary idea to me. I had to go through tons of testing and office visits during the course of 6-7 months.

I recall the worst tests involved the acid reflux and right heart catheter. They needed to check the severity of my acid reflux by inserting a tube with a tiny camera through my nostrils which had to stay inside my esophagus for 48 hours. Those 48 hours felt like 48 days for me. I could not sleep or breathe properly. And right heart catheter test was a painful, outpatient surgery where a tube is inserted from the upper femur to the heart with a probable chance of infection.

Finally when all the tests were completed, I was told to go to UCLA in the Lung transplant department to find out if I was the right candidate for the lung transplant. I was told that my acid reflux was so severe that I had to treat it first in order to undergo the transplant. It goes without saying that I was happy with the outcome.

Each year I become stronger with each step, but in reality I grow weaker with each mile. My condition was deteriorating to the point where I was contemplating on quitting my job in order to focus on my health. I told myself that I would be strong and not quit my job no matter what. I prayed to God to help me find the courage to wake up every morning and persevere to be the best person I could be. So, I guess God has a weird way of helping people, right?

In May 2009, my company was going out of service. We unfortunately discovered that we would lose our job in six months. I just thanked God and smiled. Despite the love I had for my work, it was terribly hard for me to hide my sickness in front of my colleagues and friends who had known me for years. I remember keeping my oxygen cylinder in my car and puffing my way down the stairs every evening.

My family and I
My family and I
2007, when I went India and visited Taj Mahal. I am glad that I did, today I am not in a situation to travel any more,
2007, when I went India and visited Taj Mahal. I am glad that I did, today I am not in a situation to travel any more,

Today I am doing okay with the help of medicines and 24-7 oxygen therapy. I am currently taking 13-15 medicines and over the counter vitamin supplements/herbals. My husband and my two beautiful girls have been with me every step of my life good or bad. It is mainly for them that I am living my life today. I promise myself and my family that one day I will become better, stronger and happier with every step I take.

After all, at the end of life what really matters is not what we bought but what we built; not what we got but what we shared; not our competence but our character; and not our success, but our significance. Live a life that matters to loved ones. Live a life for hope and faith. Because we have only one life to live.

I have been living with idiopathic PH for 9 years now and I am going to be here a long, long time with my family.

Thank you for reading my story. I hope that I inspire at least one person to live life to the fullest and to never give up hope.

The List of Medications I take As Of Today

(click column header to sort results)
Name of Medicines  
Strength  
Times  
Aciphex - Acid Reflux
20 mg
Take 1 tablet 2 times a day
Sulfamethoxazole - Trimethoprim
800-160 mg
Mon, Wed and Friday
Paroxetine - Depression
10 mg
2 tablets, bed time
Celcept - Scleroderma
500mg
Take 1 tablet 2 times a day
Dizoxin- Heart
125 mcg
Take 1 tablet once a day
Diltizem - Heart
60 mg
Take 1 tablets 3 times a day
Revatio - Lungs
20 mg
Take 1 tablet 2 times a day
Tracleer - Lungs
125 mg
Take 1 tablet 2 times a day
Albuterol
2.5 mg
1 vial every 4 hours
Mucomyst
200 mg sln.
Inhale wih albuerol every 12 hours
Aspirin - Heart
81 mg
Take 1 tablet once a day
Prednisone - Inflamation
40mg
Take 1 tablet once a day
Zithromycin
250 mg
Take 1 tablet once a day
Ventavis ( inhaler through Nubulizer
20 mcg/1ml
Minimum 6 times, every 2 hours,

My Doctor`s Office

Do you know what is Pulmonary Hypertension?

See results
Yes, this is me today Love, hope and faith.
Yes, this is me today Love, hope and faith. | Source

Comments

    0 of 8192 characters used
    Post Comment

    • livingpah2004 profile image
      Author

      Milli 2 years ago from USA

      Thanks for commenting C McNairy Wight 1.

    • C McNairy Wight 1 profile image

      Carol McNairy Wight 2 years ago from Provo, Utah

      Well, guess what- After persuading me that I can get hospice they changed their minds. I am too active, they said! I am not willing to give up my activities to get hospice, so I will just keep plugging along. Thanks for your great article. I especially need the cooking hints.

    • livingpah2004 profile image
      Author

      Milli 2 years ago from USA

      I understand your situation. These diseases do need proper care,medications and regular doctor's visits.You should be qualified for permanent disability. If you get permanent disability then you will also qualify for a medicare regardless of age. Marie, sorry for the late response as I was not actively involved on my hubpages since last two years. You are in my prayers. Don't give up, you will find some help some how. Take care.

    • livingpah2004 profile image
      Author

      Milli 2 years ago from USA

      Yes you are right, this is a terminal illness. Last year when I was hospitalized for 10 days, the hospice services were offered to me. I have denied the services because I didn't want to give up yet. Although, I wear o2, 24/7, still try to do as much as I could. We have to be active as much as possible otherwise this disease will take over our body.

      I was not active on my hubpages since last two years and all of sudden I opened it today and saw your comment. Very nice suggestions, C McNairy. Thank you.

    • C McNairy Wight 1 profile image

      Carol McNairy Wight 2 years ago from Provo, Utah

      Dear Milli, I am much older than you (73) and have had P.H. for at least 5 years. Only yesterday did I realize that this is a terminal illness. Your article has helped me cope with that idea . As a helpful hint I would like to tell you that I found out that hospice care is available for those of us with P.H. because it is a terminal illness. You do not have to be on your last legs or immediately dieing to get help from hospice agencies. You can get nursing help, bathing help, light housekeeping help, whatever you need-totally free!

    • profile image

      marie 3 years ago

      It's so frustrating to know that only people who can afford to see a doctor.i am living with pulmonary hypertension and congenital heart disease but the sad truth is i have no money to pay for my medicatio..i take medicine for my heart only but for the lungs i have none.i lift everything to god ..coz i know that prayer is my only weapon for my disease and i have no money for the medication..

    • livingpah2004 profile image
      Author

      Milli 4 years ago from USA

      Thanks for your support baby!

    • profile image

      Nujie 4 years ago

      Your awesome mommy(:

    • profile image

      PH India 4 years ago

      Kindly join us at http://pulmonaryhypertension.in/join/

      Your experiences are invaluable. We would like you to share them and if okay, help us chronicle them for the benefit of others.

      Thanks

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      Thanks for your time to read it,Thelma Alberts. Take care.

    • Thelma Alberts profile image

      Thelma Alberts 5 years ago from Germany

      I am so sorry for what you suffered now. Reading this hub is so very emotional for me that tears came out of my eyes. You are so brave and courageous. God bless you and your family. Take care. Thanks for sharing.

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      TIMETRAVELER2, thank you for visiting and reading my journey. I really appreciate it.

    • TIMETRAVELER2 profile image

      TIMETRAVELER2 5 years ago

      This is a terrible story, but there are many others similar to it. It shows how quickly life can change for people, and just how hard life can be. I hope you can continue to do well, and I thank you for sharing this one.

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      Olde Cashmere, thanks you for stopping by, reading and nice comments. May God Bless you.

    • Olde Cashmere profile image

      Olde Cashmere 5 years ago from Michigan, United States

      Your story was heart wrenching but full of perseverance due to the strength and intense passion for life you have. You have certainly inspired me to live my life to the fullest and have put things into perspective in a new way for me. Thank you for sharing your experience and I wish you the very best in your journey in this life. you are a wonderful soul and I believe your character and courage will carry you as far as you can imagine. Voted up, beautiful, and interesting :)

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      That`s the way to accept any challenge in our life to be faithful and hopeful. Thanks for reading my story,Mhatter99.

    • Mhatter99 profile image

      Martin Kloess 5 years ago from San Francisco

      i was stricken by a handicap in 2010, yet i remain faithful.

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      Mollymeadows, you are right, God has plan for me, only time can tell. I am gonna hold the time and move forward no matter what. Thanks for encouraging words and prayers. This means a lot to me. May God Bless you.

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      Peggy W,thanks for your encouraging words and support. It seems like I now you for long time. Thanks for voting up,feedback and sharing my story.May God Bless you too.

    • mollymeadows profile image

      Mary Strain 5 years ago from The Shire

      Pah, you're a strong woman. Doctors can only tell you what they measure, and because of that they often miscalculate. They can't measure your strength or the Lord's plan for you. My prayers are with you and your family. God bless you.

    • Peggy W profile image

      Peggy Woods 5 years ago from Houston, Texas

      You are so right in that many people who wake up never realize that it is the last day that they will be alive in this life. Your attitude towards life is beautiful and inspirational. Your family and circle of friends (including those of us here on HubPages) are lucky to have you in our lives. You are walking your path in life with courage and grace. Voting this up and beautiful and SHARING. May God Bless You.

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      Redberry Sky, thanks for taking the time to read my story. May God Bless You.

    • Redberry Sky profile image

      Redberry Sky 5 years ago

      I'm stunned by your story, livingpah. You're very courageous, and this is beautifully written and inspirational. I'll be thinking of you often.

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      Awe! Thank you for stopping by and well wishing,flashmakeit.I need prayer more than anything. May God Bless you!

    • flashmakeit profile image

      flashmakeit 5 years ago from usa

      I am glad you are doing better with the help from your medicines and oxygen therapy. I am praying some day you will be even better. Keep working on all your talents because you are a gifted writer.

    • livingpah2004 profile image
      Author

      Milli 5 years ago from USA

      ASchwartz, thank you for reading. Take care.

    • ASchwartz profile image

      ASchwartz 5 years ago from Kentucky

      Thanks so much for sharing this.

      You are so brave and you have a beautiful family.