Friends

What does a friend mean to you?  Look at the person in this picture.  Soft brown eyes, mischievous smile, a go getter look on her face.  She is a mother.  A fun mom who gets on the level of her teen, a daughter that counts on her and loves her so. Shawna has Pulmonary Fibrosis.  She loves laughing, helping her friends smile, her baby dogs, her beautiful daughter, music, the beach, crocheting, geeking out and life.

Since my husband was diagnosed with this disease at age 49 and passed away from it in 2011, I know this is nothing to play with.  There are many (as many as breast cancer) that pass away from it every year in the United States.  Health care is difficult, even when there is is cure, because of finances many cannot afford to live.  In this case, the only cure, and it is not guaranteed, is a lung transplant.

I have been blessed to know Shawna, and now, she has made the huge decision to pursue this operation.  It takes a lot.  Bravery, Acceptance, Flexibility, and Finance.  Let's not forget Hope.  Can you imagine, putting your whole life out there for everyone to see, with the hopes of raising some money just so you can, live, Breathe?
https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR3VyHnYdxrxNbvoyeqSkv_wGFyGjPHqF3q9SLfY-2ACRuUlXFtvdACo9e8https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR1_RaAIb2INj5-0-ag769y6DJjxN47YG5bF_ju7P880cSItd4aAQEzoPn8

Amazing Gift ~Written By Pamela De Loach

You know that moment in the morning before you are fully awake; I listen to my lungs - what a miracle! I can take a deep breath in and realize I can feel the air going in and filling up my lungs and then I can blow out my breath slowly. What an amazing gift!!!!!! Little over four years ago, I was fighting for every breath due to idiopathic pulmonary fibrosis (IPF). Today is my fourth lung anniversary and, as always, my donor is my hero. Today I think of their family and I hope they realize what an amazing person their loved one was and the fact they saved my life and perhaps the lives of others. What a gift they gave my family!! It’s still sad to think they left our world but left behind amazing gifts and allow others to live on. The best way you could help me celebrate this anniversary is make sure you are a donor. My family, doctors and friends are my greatest support system. Thank you all.

 ~Pamela De Loach

Information on Managing your symptoms of Idiopathic Pulmonary Fibrosis~ via; Lungs and You

This article is via; Lungs and You, please check out their website for more great information at:  www.lungsandyou.com

There are no FDA-approved medicines that treat IPF. However there is a good deal of research being performed and several clinical trials are underway to investigate potential treatments for IPF. These treatments are experimental and the impact they have on the course of IPF is currently being studied.

Despite the lack of medicines approved to treat IPF, there are still things you can do to help manage IPF symptoms and try to sustain your ability to perform daily activities for as long as possible.

The approaches used to manage the symptoms of IPF are designed to meet each patient’s unique needs. Every person’s medical history is different. In addition, people with IPF frequently suffer from other medical conditions. These other conditions may have an impact on the course of IPF (See "Managing other conditions" below.)

It’s also important to remember that each patient experiences IPF differently, and while some people with IPF don’t live long after getting their diagnosis, others may live longer than the often-quoted averages. Working together, you and your doctor can develop a plan to help you manage your symptoms in an effort to sustain your ability to participate in daily activities for as long as possible. Common approaches to managing IPF symptoms are listed below.

Summary of options for managing IPF symptoms

	Pulmonary Rehabilitation	Includes a range of conditioning and breathing exercises The goal is to help patients function to the best of their ability
	Oxygen Therapy	Recommended for patients who have low oxygen levels May help reduce breathlessness, enabling the patient to take part in pulmonary rehab exercises
	Lung Transplant	Can improve both life expectancy and ability to participate in daily activities Reserved for patients who have no other significant health problems, such as cancer; heart, liver, or kidney disease; or chronic infection, among others IPF is now the leading reason for lung transplantation in the US Lung transplantation has significant risks, including illness or fatality from the surgical procedure itself, infection, and cancer due to the use of drugs that suppress the immune system; you should discuss these risks with your doctor before considering a lung transplant
	Clinical Trials	Taking part in clinical trials may be an option for some people with IPF Talk with your healthcare team about your condition and your options

Managing other conditions

As mentioned above, it is common for people with IPF to also have other medical conditions (called “comorbidities”). These may include obesity, diabetes, pulmonary hypertension, obstructive sleep apnea, coronary artery disease, and emphysema.

These conditions will often require their own treatments and medicines. They may even have an impact on the course of IPF. Remember to always take your medicines as prescribed by your doctor.

If you have any questions about other health conditions you have, or the medicines you are taking for them, be sure to talk to your doctor.

Number of Patients Via; David Lederer, MD

Please take a look at Doctor Lederer's website:  Pulmonary Fibrosis: Clearing The Air

Every Breath Counts~ Idiopathic Pulmonary Fibrosis- Discovery Channel- June 21st- 8:00 am ET/PT

I can't tell you how excited I am to see this documentary, Every Breath Counts~ Idiopathic Pulmonary Fibrosis on the Discovery Channel- June 21st- 8:00 am ET/PT. 

Finally, an opportunity for others to learn about this disease.  Despite the many lives it affects, it is still relatively unknown.  People who suffer from this disease, as well as their family members, desperately want to live.  Many also want awareness and general understanding of what they have to go through. In this documentary is a little piece of all of our stories. 

I lost my beautiful husband to this disease and as I watched the trailer to this film, for a brief moment, I felt as though I am watching something that is affecting someone else.  It wasn't us- this wasn't our family....  But, it was us.  This was our family's story.  My family lost a father and husband to this disease and I can never hold his hand in mine again.   

When I think about the tremendous impact of this experience being multiplied by all the others who are still being diagnosed, I know that every bit of awareness is necessary.  Even if you have never heard of IPF, do try to watch this and discuss it with a friend. You never know how that one action might help to find a cure.  

With Love,

 ~Breathing

To watch a preview, Click:  http://everybreathcountsfilm.com/

My Donor, My Hero ~Pamela De Loach

It was November 10th 2011: It was a normal day for the De Loach’s (expect for me who has IPF and has to wear oxygen 24/7, this is as normal as it get for us). Bob and Rob were off to New York and I’m off to work thinking about the day and the long weekend with my girlfriend who is staying with me while Bob is away. It was a normal day at work as I ate my lunch in my office because I do not have the energy to walk to the staff lunch room. Back in the classroom we start lunch breaks for everyone else, one of the students’ needs to go to the nurse for a procedure so the other aide leaves.

Whoever said your life can change in a second was right. The phone rings, it’s the office, Tampa General Hospital (TGH) is on the phone they want to speak to you. I politely ask if I can call them back; the voice on the other end says "No, I’m coming to stay with your kids and you have walk to the nearest phone with an outside line." It finally dawns on me what it was- “the call”.

I thought about “the family plan” developed for when the call came, but I was so excited and I couldn’t drive home. Some of the school folks offer to drive me to TGH. The new “family plan” is quickly developed: Rachel, Joshua, and Angela would meet me at TGH and my school buddies would stay with me until my family arrived. I arrived at TGH and the testing began to see if the donor and I were "the perfect match".

As we waited for the test results to come in, the doctors and I spoke to Bob and the rest of the family in upstate New York via Skype. Everyone was in a good mood and when my coordinator announces “IT’S A GO” the room breaks out in cheers and tears as our prayers have been answered.

The next hour is a blur, the family walks with me to the OR and we say goodbye. I really got scared in that second. The surgery started shortly after that and my new lungs are in on November 11th 2011.

My donor and their family are my heroes. In their grief they honor the request of their loved one and gave me a chance to continue on with my life. As we celebrate this second year, we have to remember my donor’s family. Please remember to check off that donor box on your driver’s license and tell your family your wishes.

**Thank You, Pamela for sharing your story with us!  What a beautiful gift that has been given. ~Breathing 

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~