The Power of Perseverance ~Frank shares his story of a double lung transplant~

 

Hello, My name is Frank and I was diagnosed with Pulmonary Fibrosis (IPF) in the early part of 2007. I became symptomatic in the fall of 2006 with a cough and shortness of breath. I didn’t think much of it because I was overweight and out of shape. Not to mention I had just quit smoking after 25 years. I had my first heart attack at age 39 and that was the warning sign that everyone including me missed. In the beginning I was in denial. I still rode my motorcycle how could I be sick? As time progressed so did my disease. As things progressed the reality became more prevalent. As I got sicker it was a different type reality. I am going to tell you a brief summary of my journey down the road less traveled and how determination and perseverance are why I am here today.

 

For several years my Pulmonologist treated and stabilized the progression of my fibrosis. I lived a fairly normal life. I worked and traveled and enjoyed being with my family. Eventually I started using supplemental oxygen to breathe easier. The cough got worse and the oxygen increased. Then one day on my way home from work my oxygen tank emptied and it affected my ability to judge the traffic. I was on my motorcycle and tried to stop hard. I lost control of the bike and laid it down. I landed on my chest and slid 40 feet down the street before stopping. The trauma set my progression in motion and this time there was no stopping it.

 

You will often hear transplant patients and medical staff talk about “bumps in the road”. These are the little things that cause some difficulty in life as a result of the illness or the surgery. Most of the time they occur after transplant and can be fixed with some treatment or adjustment in medications. I was the lucky one. I had my bumps in the road before my surgery.

 

For my first bump I was at my cardiologist and explained to him that I had a really bad cough and I was concerned about the stress on my heart. So he put a monitor on me for 24 hours and that’s when we found out my heart rate drops below 40 when I sleep. For those that don’t understand what that number means a good athlete will slow down to around 40 beats and I was no athlete. When the doctor said we need to put in a pacemaker I became emotionally unraveled. “I need to check with the transplant team first. I don’t want to be disqualified for a transplant because of this” All sorts of emotions were running through my head. I can die from having my heart stop or I can suffocate from my lungs not working. Some tough choices needed to be made. The next week I was having the pacer put in.

 

My next bump was really scary. I had been complaining to my doctor that it felt like there was something in the back of my throat like my sinuses were bothering me. I told him I could not blow it out my nose nor clear it.  He attributed it to inflammation. Finally when I when I started choking on my food he had me see an ENT doctor. Well when he found the golf ball size tumor in my throat I figured we were done, my life was over. The biopsy was inconclusive so they referred me to the Mayo Clinic where they did a different type of biopsy to find it was not cancerous. But I still would not be able to get listed for transplant with the tumor there. The transplant team was concerned it would obstruct my airway. The ENT surgeon felt my lungs would not survive the surgery to remove it. So once again I faced off with the grim reaper and this time I was going to kiss his butt.  Perseverance will prevail.

 

By this time I am on high levels of oxygen and I get around on a scooter because I can’t walk without my oxygen levels de-saturating to a dangerously low level.  I was tired and running out of fight. I knew I needed to do something fast. I set up an appointment with the social worker from the transplant team. I told her I was going to die and I was done fighting. The ENT and the Transplant surgeon could not agree on what to do so I told her that I wanted a meeting with all my doctors the Primary Care, Pulmonologist, Cardiologist, Transplant team, the Surgeon and even the doctor from Mayo Clinic. I told her we will all meet here at the hospital on a Saturday morning and we are going to discuss my case and get this resolved. Then we will see who wants to sign my death certificate in the presence of the other doctors. She advised me that it would be difficult to get everyone together at the same time and I reminded her that a subpoena would take care of that problem. Ironically I received a call that week to go in and test to see where my numbers were at. I was listed a few days later and I got my call in two weeks from the time I was list.

 

I am now 18 months out from a double lung transplant and I live a fairly normal life. When you have Pulmonary Fibrosis and you receive a lung transplant you exchange a terminal disease for a chronic one, but the benefits far out weigh the risk. I will take anti rejection meds for the rest of my life and I will need to be conscience about my exposure to germs and bacteria but a small price to pay for the gift of life. I have said this ever since I was diagnose and I will forever preach this “YOU ARE YOUR BEST ADVOCATE” so don’t ever give up and fight till you get what you need.

 

God bless. . ~Frank J. Giunta~

A Song in My Heart

Peg shares with us how having Pulmonary Fibrosis affect even life’s smallest joys with her unique humor and honesty.  She writes...

Ok, call me crazy... (not that fast, Bubba!) but, I was driving home tonight with the radio cranked and I was able to do something I haven't been able to do in a long, long time.  I sang along to the song on the radio - the whole song - and was still breathing.  Of course I still can't sing worth a hoot, but, I had the breath to do it.  That excited me no end!  I even danced a little jig in my seat. Those who have Pulmonary Fibrosis will certainly understand my excitement and those who do not, be grateful~ you don't have to know what it feels like not to be able to sing. Will it last? Who knows? But today I did it and it makes my overgrown, damaged heart happy. ~Peg Baer Hassett~

 How often do we choose to turn to music as a reflection of our emotions?  I know for myself, that there have been times I would be in my perfect sound studio -the shower, belting out Linda Ronstadt and thinking I sound just marvelous!  There have been times that when missing my hubby, I would play our songs and sing along and cry.  In happier moments, I would just hum to myself mindlessly going about the day.  It would be so hard to imagine not being able to sing a song.  ~Breathing~

“One good thing about music, when it hits you, you feel no pain.” ~Bob Marley~

I Would Do It All Over Again ~A shared story of John and Susan~

Susan wrote her heart out after the recent passing of her husband John.  She has been kind enough to share their story with us~

My Husband was given 18 months to live back on February 14^th, 2007.  He was diagnosed with Pulmonary Fibrosis, Pulmonary Hypertension, Emphysema and later with an AAA and A Fractured T12.  Eighteen months came and went.  Then, we started our ride on the roller coaster from Hell.  I watched the Love of my life change from a strong, hard working man to a man who spent 24/7 in bed.  Only able to get up to go to the bathroom and who had to wear a catheter for three years. 

He would try not to let me know how bad it hurt.  He would think I was sleeping and he would scream and be crying.  He had an e-coli urinary track infection for over four years.  Over six years and three months later, we would ride the coaster over and over again.  He would always get so close to dying- over 10 times and every time he would bounce back.   

There were things he wanted to happen before he left this world.  He wanted to see our sons again.  They came at Easter.  He wanted to live long enough to see the adoption happen.  The adoption was final on April 11, 2013.  He wanted my Social Security and Disability Insurance to come through, so I would have an income. 

Hospice took the choice for him dying at home away from me.  He had to be taken to the hospital on  Thursday, May 2, 2013.  Everyone kept saying- They didn’t know John.  He could bounce back just like before.  I didn’t think so.  John stopped breathing three times on his way to the hospital.  The hospice nurse was in the ambulance with him and gave him his Roxanol and his Oxygen would go up.  I had that gut feeling that this was it.  Six years and three months, at this point, seemed like a mere few days...

Around 4:45 p.m., I got a phone call that my Social Security and Disability Insurance had been approved.  I told John and he started crying.  I told him everything he wanted to happen, had happened.  He was able to talk as they tried to make him comfortable.  I had told the nurses that if it looked like he was going to go to wake me up, and at 2:15 a.m., they woke me up. 

I was laying beside him and I leaned over and laid my head on him and hugged him.  His Oxygen shot up to 77 and his heart rate 100.  I had stopped his passing.  I cried and cried because that meant he had to suffer longer.  The nurses said that he had enough medicine in him to put two grown men on ventilators.  He finally settled down and I talked to him and told him ~It was time to let go and go to Heaven.

He kept trying to pick up our Chihuahua, Poco, who died on March 13, 2011, and our cat Gizmo, who died in 1999.  I had just put on one of his favorite songs, Amazing Grace (My Chains are Gone) and was telling him that he wasn’t alone.  I was right there with him.  He lifted his head and glanced at me. 

I said, “It’s okay, John Baby.  I love you so much Baby.  It is finished.  The battle is over.”

He held my hand as we laid there.  He pulled his arm away and laid it on his stomach.  I hit the nurses button and they came running.  But, My Baby was gone.  I walked over to the window to look out while they took care of him.  I didn’t want to see his face. 

The nurses left the room.  We were alone.  I got my stuff together and as I was leaving, I went to his head and laid my face on his ear and talked to him.  Told him Thank you for 25 wonderful years and that I loved him and would do it all over again.  I kissed his forehead.  I started to leave the room, when, I had a very strong urge to look at him.  So, I turned and looked at him.  As tears streamed down my face, I smiled.  John had the most peaceful look on his face that I have ever seen.  No look of pain or torment.  Just Peace.  I am so glad I looked back.  It is a memory I will not forget. 

~Susan Stevenson Lee~

Rain Song

There is a song that I love and in it the lyrics say, "I've felt the coldness of my Winter".  I have sang that many times and thought I knew what the words meant.  At this moment, in my part of the world it is Springtime.  Many areas are still dealing with a late Winter, causing people to wonder when the beauty of Spring will come and the Sun will shine upon their faces and bodies.

I want to share something with you. For the last while, I have been secretly wishing Spring away.  I have been content in my Winter.  With the dark hours and safety of my dwelling, I am in my little cocoon.  Safe.  When the rays of sunshine began to peak out and the days grew longer, my heart was filled with anxiety.  I looked outside my window...

I thought about how my husband was a 'Boy of Summer'.  His tan skin and sparkling eyes, like water.  He enjoyed every moment in the sunshine.  I used to be the same as he.  We both would awake in the early morning hours and work in our yard.  Silent, yet somehow dancing to our own music.  We, together, were ambitious in seizing the day.  Working hard to preserve our simple home and encouraging the flowers to bloom.  As the days grew warmer, we ended our daily dance by jumping in the river.  Soothing and sweet the water rushing through us.  Then, we lazily ended our day blissfully lying around, looking at the birds and the sky.  Talking about this and that.

As I looked outside my window, maybe I saw him in everything Spring.  Maybe I was scared that somehow, I must step outside and find the gumption to work on all the unfinished projects that were left behind.  Maybe, I was scared of what others would see of me.  Could they see how alone and afraid I felt?  I couldn't have that.  It overwhelmed me.  I walked away from the window and wished Spring away.  I want to snuggle back into my quilt and stay there. 

Days grew warmer and I stayed in my quilt.  It is a conscious decision.  I know, because I contemplated the repercussions of withdrawing from the world.  It would surely take it's toll on my body and health.  My spirit and creativity.  But, I didn't know how to start. 

In a moment of giving up or maybe it was reaching out, I grabbed the phone book and called a landscaper.  I know it doesn't sound very profound.  But, it took a lot to just do that.  In some ways, I had to admit to myself that I could not do it all.  The gentleman came out and I showed him all of the unfinished projects around the house.  He wrote me a bid.  "Excuse Me?"  I thought when I saw the price.  I let him know I would sleep on it.  That night, I held the bid in my hands and mentally asked for guidance from my husband.  I didn't receive an answer, but knew if he had been here, he would say, "What are you doing?  You know I can do all that!"  ~But You are not here.  As I looked at everything listed, I chose the top two priorities and the next day, called the landscaper back to schedule the work. 

In the meantime, I put on my gardening shoes.  Found my old gloves and stepped outside to work on the other items that I could not afford.  I felt the Sun on my face and my hands in the dirt.  I worked and worked and the kids joined me.  I worked until my bones ached.  But, it felt good.  I continued to add to my list and today I feel the glory of the day.  I see the birds flying and beautiful sky.  I feel closer to my husband.  Each day, I wake up and can't wait to meander around the yard.  I feel a lightness in my heart.  It feels like living. 

Sometimes, it is true that it takes just one, little, tiny action to get the ball rolling.  It gains momentum and the 'Coldness of my Winter' has passed ~At least for this day, and today is all that matters.

Excursions

This weekend my youngest son and I took an excursion into the city.  It was for his annual cardiology appointment.  He was born with a congenitial heart defect called Tricuspid Atresia.  He is now 13 and has had three open heart surgeries.  We monitor it every year.  One day, he may need a heart transplant, although his doctor indicated he is doing very well at this time :)  This made us very happy!  We brought the old camera that I found in the drawer and took a few pictures.  xoxo

New Perspectives

The other day I was looking through a drawer and I found my old camera.  It has been a long time that I have used it.  I took many pictures with that old thing :)  Some of the pictures were loving or goofy times shared with my family.  Some pictures were for my, then- blog, River-Rose.  Other pictures were for my local newspaper.  But, all the pictures taken were for me.  I really love taking photos. 

I have blown the dust of the camera and hope I still know how to use it.  I am going to take a teeny-tiny bit of time for myself and hopefully, return with some new and fresh perspectives through the eye of my lens. All of which, I am going to share with you!  xoxo 

Soul SAT's

Oxygen Saturation (SAT): 

Oxygen is vital for human survival. All the cells in our body need a certain amount of oxygen to carry out their duties. Oxygen saturation is the amount of oxygen that red blood cells carry, which attach to hemoglobin molecules. Normal saturation levels are 95 to 99 percent. Typically, a person will only reach 100 percent when supplemental oxygen is used. It's when saturation levels fall below 90 percent that the body begins to suffer adverse effects.  (via eHow.com)

 

The above photo is of an Oxygen Saturation journal that I kept while caring for my husband.  We usually took his SAT measurements when he was resting, then right after activity, such as a bath.  We documented how far his SAT levels dropped and how long they took to recover.  It was helpful for my husband and I to see how we could adjust his Oxygen intake according to his needs. 

 

As the description above indicates, that Oxygen is vital for human survival.  If the saturation level drops below certain levels then it can affect the rest of the body.  When my husbands SAT's dropped, he became tired and listless.

 

This has me wondering if the Soul or Spirit within us needs its own nourishment, just as our body does.  After my husband passed away, I spent a great deal of time in shock.  I dealt with this loss by realizing all the things that needed to be done around me and I busied myself with this.  As I wrote previously, I created a list of goals to achieve and set about achieving them all. 

 

Now, I seem to be taking a time out.  Wondering to myself what list of goals I should create next.  I sat down and started writing all of my goals, whether planting a garden or painting the house.  I know these are positive things.  But, I just sit and look at the list.  Stumped as to where to start.  My heart does not seem to be in it.  I have realized that may be because my soul needs nourishment so that it can breathe and grow.  To listen to my soul, my spirit.  To give it nourishment, feed it new oxygen.  I want to put that at the top of my list.

Water

When you were born, you were cleansed in it

Thirsty, you drank from it

Playfully, you splashed in it

In Sadness, it rained upon you

With Loneliness, it froze and drifted from the sky,

 Love, you threw in rose petals

Comfort, it gave you in illness

Spiritually, it renewed you

You, just like Water, slipped through my hands.