Philip’s 47 year wait to breathe “easy”

I hope you are doing well in spite of the hot summer sun.  The past couple of months have been more of a struggle for me than usual, at this time of year. When I need encouraging, I often go to one of my favorite books on living withBeingSickWell chronic illness, Being Sick Well by Jeffrey H. Boyd M.D., M.P.H.  This week in the book I read the true account of a severe asthmatic named Philip Holladay.

At age two, Philip developed severe asthma.  Sometimes his mother would look at him and run from the room sobbing.  No one would explain to Philip why she did this, or talk to him about his asthma. His family cared for his basic needs, but kept him at arm’s length, neglecting him emotionally.  Throughout each day he coughed up large amounts of mucus and gasped for air so loud,  you could hear him throughout the house.   He used his inhaler frequently just to breathe for a few more minutes.  (p186)  Everyday he woke up, this young boy  was amazed that he was still alive.

One day, he made a conscious decision not to associate with his two younger brothers for fear the world would reject them, as it had rejected him.   Students shunned him or made fun of him at school.  Some adults were disgusted by his symptoms, others could not look him in the eyes.  No one  reached out to him.  He slowly retreated into his own world, immersing himself in mathematics.

“When he was fourteen, in junior high and walking from one classroom to another, he suddenly stopped breathing.  He was simply unable to gasp any more air.  Alarmed, he rushed out onto the grass, took hold of the flagpole for support, grew weak and numb, and his vision dimmed.  Within minutes he would be dead.  A thousand kids walked past this dying boy.  Everyone looked, but they all turned away from his gaze.  As Phillip was suffocating, he gave up on the human race.  He wanted nothing to do with these peopleasthma21 who did not bother to call the school nurse whose office was just fifteen feet away. Philip had always gone to church but didn’t take it seriously.  He did not know if there was an afterlife.  He hoped there wasn’t.  If there were an afterlife, he wanted to be alone, with no humans to annoy him.  Then suddenly against all odds, air poured into his lungs, Philip survived.  Perhaps his bronchial muscles simply relaxed”.  p 187

After the above incident, he gave up on humans entirely, shunned everyone, and only spoke a word or two when necessary.

At 17, Philip had decided people invented God to comfort themselves. Being a mathematician, his logical mind could not make this decision without proof, so he set out to disprove God.  He read the bible from cover to cover only to find love within its borders.

Phillip lived in a loveless world, but had now found something he wanted to be a part of.  He wanted to be capable of loving people like Jesus Christ did.  He prayed a prayer to belong to Christ and then set out on a quest to change his life.  First, he had to learn how to communicate with people, so he joined a bible study.  He watched others relate and began to take baby steps himself.  Soon, Phillip emerged as a leader.  While majoring in mathematics at North Carolina State University, he served as a youth pastor.  He earned his Ph.D. and became more active socially.

At age 26 Vanceril became available as a research drug.  It was prescribed for Phillip.  For the firstFDA-phases-out-certain-inhalers-OCDIUEA-x-large time in his life, his asthma became less severe.   He began to feel as though he might have a future after all, and began to think about dating. He soon met Georgianna, a divorced mother of three , who was not put off by his coughing and wheezing.   She had experienced  an even more difficult life than Philip.   They fell in love and married.  To this day, Georgianna is his closest friend.

At age 47, some new medications were prescribed for Philip:Singular and Pulmicort.  They revolutionized his life.  He began to breathe as if he had no asthma.  The peak airflow of his lungs doubled, and became better than that of an average healthy person.  For the first time in his life, he could breathe through his nose.  (p189)

For Philip, because of the advances  in medicine, the latter part of  life is better than the beginning. What most people take for granted is a special gift to him each day of his life:unhindered breathing without gasping, coughing and pulling up mucus. He is no longer embarrassed or fearful of dying. He has peace of mind.   Philip does not even seem to have any residual bitterness or anger because of  the difficulties he experienced growing up.  As a professor of Mathematics at Geneva College in Beaver Falls, his students have many good things to say about him.  You can read some of them here at Rate My Professor.

While there are some people that do not agree with conventional medicine, Dr. Boyd has found during the research for his book Being Sick Well, that most sick people hold conventional medicine in high regard.  For me, having medication available has been a lifesaver.  I have been on hydroxychloroquine (Plaquenil) almost 12 years.  I am very grateful that my side effects are limited and I can live a pretty full life.  I am thankful  I do not have to take steroids or anything more powerful than Plaquenil at this point.  I have also been on cabergoline (Dostinex) or some variation of it for 20 years.  Without it, I would often suffer headaches several days a week, increased lupus symptoms and hyperprolactinaemia .

Every visit now, the doctor tells me the lupus may burn itself out someday.  Unless God intervenes, I doubt much will change with the Raynaud’s, Sjogren’s Syndrome, and osteoarthritis however.  But, every so often, with his approval,  I try to cut my hydroxychloroquine (Plaquenil) dosage in half.  I usually only make it 10 days to 2 weeks.  Recently, I pushed it to a month with my symptoms increasing with each passing week.  I was a little discouraged to have to go back to full dosage, until a friend reminded me how thankful I should be for medicine that helps me.

It can be easy to lose sight of the many medical blessings we  have and focus on the health challenges instead.  Not Philip.  He is living each day with a strong awareness of how blessed he is.  His quality of life would be very different today if it were not for the many people who worked  long and hard to develop effective asthma medications.

I  believe God also has a hand in the process.  He gives people wisdom, strength, and tenacity.

He [God] changes times and seasons; he [God] deposes kings and raises up others. He [God] gives wisdom to the wise and knowledge to the discerning.   Daniel 2:21 NIV

I am thankful to God for my medications and my doctors.  I am thankful for those that work tirelessly to bring forth new lupus drugs to help those in desperate need.   I know we are far from a perfect solution, but may the work continue, and may God help each scientist.

Hopefully, one day, each lupus patient will be able to “breathe easy” with their symptoms completely under control.  God bless the medical explorers.

Many blessings to you…Leslie Rose K

 

 

 

Advertisements

7 responses to this post.

  1. Wow, what an encouraging post Leslie!! I loved reading about Philip and how he is doing today. I can’t even imagine, but yet I can. I too, am thankful for my medicine. I know I am a lucky one in that I haven’t had to take any steroids too and I know I feel better now than when I was first diagnosed even though I have some bad weeks. I know what to expect now, I know I have to “baby” myself to get through those weeks. I know I have to live with less stress, so therefore learn to let things go better. I have learned so much and like you said it isn’t perfect, I know I’m a heck of a lot better with my meds than without them. Thank you so much for this post Leslie! I really enjoyed this one. Hugs, Brenda

    Reply

    • I am so glad you were uplifted Brenda. Yes, we are very very blessed. Thanks for your encouraging words. Thanks for taking the time to comment. I am glad you have made so much headway in dealing with the day to day “life with lupus”. Many blessings. Leslie

      Reply

  2. Great post, Leslie.
    I just added that book to my Amazon wish list.
    I hope you’re well.

    Reply

    • Hi Bill. Good to hear from you. My husband and I really liked your last post. Everything you do is so well done. Even though I have not done the challenge I am going to make a donation on your behalf. You are such an inspiration and I pray for you very often. I am thrilled that so much has been raised for ALS. I hope you have had a blessed summer. Let me know what you think about the book. Leslie

      Reply

    • I take that back BIll. Ron is going to do the ice bucket challenge for us. Thanks for all you do to encourage and inspire. Oct 13th…Looks like the ice bucket challenge is not going to happen here. Oh well. Maybe another time.

      Reply

  3. My husband’s asthma was nearly the same, but he did not face any type of rejection for it. If not for the grace of God, and the new medications, he would probably not be alive now, either. Phillip’s story provides important balance to those who claim medications cause more harm than good. With our chronic illness, we understand the role that medications play in improving our heath and quality of life, and perhaps saving it. Thanks for an excellent post! LA

    Reply

  4. Thanks for taking time to comment LA. In a recent post that you wrote, you discussed this very issue. I am glad you and your husband was able to move beyond those difficult days with the new medications that were invented. Thanks for your support.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Lupus, the Adventure Between the Lines

One Patient's Positive Perspectives

Ivory Spring

where treasures of past and present connect

The Daily Post

The Art and Craft of Blogging

Dominate Your Diagnosis

Reclaim your life after a diagnosis of lupus/autoimmune disease

Kindness Blog

Kindness Images, Videos, True Life Stories, Quotes, Personal Reflections and Meditations.

Friends Craftin' with Friends

Reclaim your life after a diagnosis of lupus/autoimmune disease

Unshakable Hope

“May the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit.” (Romans 15:13)

%d bloggers like this: