The Boat and The Stick

I mentioned that I was going on a little summer trip.  One of the things running through my mind was whether I should bring a teeny bit of my husband's ashes to our destination.  He used to love the area and it was a place we visited on our honeymoon.  Years before my husband was diagnosed and passed away from Pulmonary Fibrosis, we were discussing things like burial vs. cremation and our desires as far as that is concerned.  He always told me that he wanted to be cremated and since he enjoyed traveling our country very much, he also indicated all of the states he wanted his ashes spread.  I told him that was a bit inconvenient as they included practically all of the lower 48.  I remember telling him, that it's not like I would want to go on a cross-country trip after losing him and I found his wishes to be somewhat unreasonable.  He just laughed and told me to stand on a bridge and sprinkle him on a big-rig truck passing below, if that made it easier for me.  I would have never, in my right mind, think that it would be such a short time in the future that the idea of this would my reality. 

My son and I did bring a little of my hubby with us on our journey.  Sounds strange to say, but it was a couple of tablespoons.  We knew just where, if we were to do so, that we would sprinkle him.  The thing holding us back was the idea of letting him go~ even if it was just a little part of him.  The consolation I kept in my mind was that the real spirit of my husband did not lay in those ashes, but was alive and constantly with us in everything we did.  I knew my husband would have liked this.  In the same area I looked for a sign of his approval.  Within moments, I saw it.  Two pieces of driftwood.  One, in the shape of a boat and the second a very beautiful stick.  My son had been searching high and low for the perfect stick.  With the stick he drew into the sand the letters of my husband's name surrounded by a heart.  It took him more than an hour to do this as he made each letter big enough to see from the stars. 

Well, Will You Look At That!

My hubby loved classic cars.  He had an uncanny way of knowing the year, make and model of most cars that we ran across.  If there was a classic car on the road, in a field, or in our general vicinity, his sonar went up and he would be sure to locate it.

He would point them out to me and my son.  "Well, will you look at that!" He exclaimed. 

We would all crane our necks to see what he was pointing out. 

After my hubby passed away, my son continues to point them out.  He tries his best to name the model or the year it was made and when I ask him how can he tell, he says it's all in the headlights, or the grill, or the doors.  It warms my heart to see this in my son. 

Between A Rock and A Hard Place -Dan Mathis

As a person who has Pulmonary Fibrosis and is an advocate for spreading awareness of the disease, Dan Mathis shares his frustration of its impact upon his quality-of-life as well as the type of  care received from the medical community...

I hate Pulmonary Fibrosis.  Have I told y’all that?  The doctors will not operate on my hips because of the Pulmonary Fibrosis.  The pain doctor will not treat my pain with the medications it will take to help –because of the Pulmonary Fibrosis.  He says he is afraid of me because I have Pulmonary Fibrosis.  What is a person to do?  What?  Go to the ‘street drugs’ to get relief?  What?  Go ahead and go into hospice in order to get help?  What?  What?  What???  ~Dan Mathis

Dan's concern is not an isolated incident.  There are many folks who do not qualify for a double-lung transplant in order to save their lives.  Whether due to their age, other ailments, financial or logistical concerns; or all of the above.  Some, such as my hubby, decide that they would prefer to try to manage their disease and live out the remainder of their lives with the quality that they have become accustomed to.  I remember when my husband decided not to get a double-lung transplant; the patient advocacy group that was assisting us essentially explained to us that if he was not going to pursue the only viable option for survival, they would recommend hospice.  It was the right thing for them to do, although explaining this to my husband was quite difficult. 

There are so many emotions that come from the decision making process of going into hospice.  Essentially it is coming to terms that the medical community does not believe you will get better or live for more than six months.  On the other hand, one will receive all the medications it takes to be comfortable, as that is the primary goal -making the patient comfortable and meeting their current needs.  When I discussed this with my hubby, I remember telling him that just because he goes on hospice does not mean there is a time limit on his life, although it would allow him whatever he needs in order to have a good quality of life while he is with us.  Such a heart wrenching thing to think about.  Thank You, Dan, for allowing me to share this.

Happy Father's Day

 

Hi Honey.  Happy Father's Day.  We miss you.  You were a wonderful father and wanted more than anything to teach your children about honesty, hard work, humor, love and integrity.  I know it must make you proud to see all of your children and know that they did, indeed, listen.  It really did soak in.  I am still working on your favorite; getting them to put things back where they belong.    I love you, Babe, and I know you are still watching over us.

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~