‘Take a Breather’ 2014 Recipients

The Canadian Pulmonary Fibrosis Foundation is happy to announce the 2014 recipients of the “Take a Breather” Caregiver Recognition Program.

The ‘Take a Breather’ Caregiver Recognition Program is a unique program focused on recognizing the significant role of those who care for someone living with pulmonary fibrosis (PF). This program has been made possible through an educational grant from InterMune Canada.

The individuals below will receive a “Breather” — a gift that lends assistance or provides respite for those who graciously put others before themselves. Valued at $1,000, each Breather will honor those who respond to the unexpected needs, and share in carrying the weight, of those living with PF.

Click the links below to read the nominations for our recipients and their personal stories.

Joyce Wilker

1. Joyce & Don WilikerJoyce Wilker

City: Woodstock ON
Nominated by: Lori Walton, Daughter

Nomination
My Dad, Don Wilker was diagnosed with IPF in Oct 2012. Since that fateful day, my Mom, Joyce Wilker, has been by his side every step of the way doing everything possible to help him out. My Mom is not in the greatest health herself and deals with horrible back pain every day. You never hear her complain about any of her illnesses – she just continues to meet each new challenge that comes up with grace and courage. My parents, especially my Mom, love to travel and had wonderful plans to spend their retirement years travelling the world. Unfortunately, those dreams were squashed as Dad’s condition has progressed quite rapidly. When the opportunity for Dad to try Pirfenidone came up, I dismissed this possibility immediately as my parents don’t have any drug benefits to cover the huge cost and are not wealthy people. Without a moment’s hesitation, my Mom decided they’d spend their life’s savings for this chance to prolong my Dad’s life. As Dad’s disease is progressing rapidly, he’s now almost exclusively reliant on a wheelchair. My Mom now pushes him everywhere and lugs his wheelchair in and out of the car just to keep my Dad busy and as active as possible so he’s not bored at home. The physical feat of this alone for my Mom, with her back pain, must be excruciating, but she continues to do whatever is needed for the love of her life. My Mom’s devotion and love for my Dad is amazing and she definitely deserved to “Take a Breather”.

Sadly, Don Wilker lost his fight to pulmonary fibrosis on September 30th, 2014.

Personal Story
My husband, Don was diagnosed with Idiopathic Pulmonary Fibrosis in October 2012. Unfortunately, his case advanced quite quickly. It was very difficult to watch my husband of 50 years go from a fairly active, sports-minded man to being stuck in a wheelchair, barely able to breath, in a span of 2 years. In the past year, each week he seemed to lose the ability to do something else for himself. Through this ordeal, I have learned a new respect for my husband, who went through all of this without a complaint. For myself, I have learned to cherish each moment because dealing with I.P.F. has shown me that you can’t take anything for granted. Sadly, Don lost his battle with this horrible disease on Sept 30, 2014.

The ‘breather’ offer of a dinner out for my family was so easy to choose, as they have been with me every step of the way to support both their father and me on this difficult journey. Without their help, I’m not sure I could have managed and I appreciate the chance to give them a nice dinner out to show my appreciation.

Doreen Parker

2. Doreen & Gordon ParkerDoreen Parker

City: High River, AB
Nominated by: Cindy Evans, Daughter

Nomination
I would like to nominate my Mom, Doreen Parker. She is an amazing woman who cared for my Dad, Gordon Parker, who was diagnosed with IPF last April 2013. My Dad just passed away on June 17, 2014. It is very hard to accept his death from a disease that we had never heard about until last April. My Mom stopped everything in her life to help my Dad. She even had all carpeting removed from their house to try to help as much as she could to improve his environment. Little did we know that he had very little time left with us.

My Mom was offered “home care” but refused it so my Dad would be surrounded by his loved ones always. Towards the end, my Mom bathed and dressed my Dad and made sure he was eating healthy meals and she made sure he had different outings to change up his days. Eventually, they couldn’t go out any more as his oxygen flow was so much and she couldn’t keep up with his portable tanks.

My Dad was happy right up until the afternoon that he passed away from IPF and I thank my Mom for keeping him safe, happy and as comfortable as she could with this horrible disease.

My Son and 11 of his friends are running the Tough Mudder event and all 12 of them are raising donations in my Dad’s name to be donated to CPFF. You should be seeing that money some time at the beginning of September. It’s all we can do right now to try to come to terms with my Dad’s death and trying to help out your foundation.

Thank you to all the caregivers out there that are doing their best for the patients with this disease. As we all know, it doesn’t affect just the patient but their entire family.

Sadly, Gordon Parker lost his fight to pulmonary fibrosis on June 17th, 2014

Personal Story
Hi, my name is Doreen Parker. My husband of 57 years, Gordon, was diagnosed with IPF in April 2013. He passed away at home on June 17, 2014.

Our family was devastated to find out that this was a terminal disease with no cure in sight except for a lung transplant, which my husband was too old to receive. We had never heard of this disease before, which lead to many hours of reading up on it.

My life then stopped and my caregiving went into full swing. At the beginning, he was able to do some of the things he wanted to do providing he wore his oxygen full time. He loved to eat out and walk around the stores. He was a “doer”! He liked to tinker and was so happy doing anything! Towards the end, all that had to stop. He wasn’t able to bathe or dress himself. Walking the few steps from the dining room to the bathroom was a difficult journey which more frequently, ended with him passed out on the floor.

I stayed with him 24 hours a day, 7 days a week. He wanted nothing to do with HomeCare Services by an outside provider. He was afraid to be left alone with a stranger. He didn’t want to be in a hospital, he wanted to be at home.

On top of all this, as if this wasn’t already bad enough, my husband, Gordon, had dementia. He sometimes understood why he was having so much trouble breathing and why he had to wear his oxygen but most times, he didn’t understand. It’s devastating when a patient understands what is happening but it’s even tougher to deal with IPF when they don’t. I understood it and it nearly broke me to watch him struggle to breath every moment of everyday.

Gordon passed away at home after having a nice breakfast and his sponge bath. His struggle to breath was over. Gord was 78 years old.

I can only hope that we find a cure for this devastating disease very soon.

Jane Hill

3. Jane HillJane Hill

City: Winnipeg, MB
Nominated by: Katherine Campbell, Sister

Nomination
I would like to nominate my sister, Jane Hill, for caregiver recognition. Both my parents died from IPF and she was instrumental in the care of both of them, especially my father who passed in December 2010. Jane took my father to all his medical appointments, outings with friends and family, and made meals and cleaned his condo. During the last six months of his life, she took him into her home and cared for him. She did everything but bathe him. Due to her efforts, I am certain my dad lived a little longer and with much more dignity. Towards the end, Jane arranged for homecare (so she could run errands), and nursing care. She was there to call the ambulance when he had to be hospitalized and at the very last time he entered the hospital. She asked for no money from my father for doing this and was the most by his death. All funeral arrangements were made by her as per my father’s requests. She is truly an angel.
Personal Story
Thank you so much for the recognition. It is not something I expected but I am truly touched. While I looked after my Dad out of my love for him, this Take a Breather Award is wonderful in that I am receiving a surprise recognition and am able to tell my story to a national audience out of my love for him.

My Dad was diagnosed with IPF in Oct 2006 just 7 months after my Mom passed away from IPF. I assisted my Dad and sisters in looking after my Mom until her passing at her home in March 2006. I would go to their home after working a 10 hour day and then make dinner for them and stay until 10 pm each night helping Dad with Mom, go home and sleep and up for work the next morning. On weekends I would spend a night or two staying there so my Dad would be able to get a full night’s sleep while looking after Mom. Mom passed away in my arms.

When my Dad was diagnosed, the family knew what Dad and the family were going to go through after losing Mom. As the disease progressed in Dad, he became more and more dependent on me for day to day activities such as shopping, doctor appointments, housecleaning, etc. In late 2007 I made the decision to retire, partially because of Dad’s illness. I retired in January 2008 and Dad was my focus. I took him to all his appointments, shopping excursions, dropped him off and picked him up from his weekly lunches with his buddies. I put together luncheons and dinners at his home and later at my home so he could entertain his friends and family members. Anything he wanted or needed. In March 2010 we sold his condominium. I packed up his condo and he moved in with me in April. From then on I was his primary caregiver 24/7/365. As the disease progressed he became more and more dependent on me. I received respite care for a few hours twice a week and at first he was comfortable with me leaving him to go shopping and to appointments but as he got weaker and the disease progressed he no longer wanted me to leave the house. It was like a role reversal where I was the caregiver/parent whom my Dad felt safe with. So I used those few precious respite hours to get a sound sleep while respite sat with him. The sleep was no longer than 2 hours as he needed his medications and respite will not administer any drugs. But I could sleep without having to listen for him if he began to struggle. He needed medication every 2 hours during the night as well so I set my alarm for every 2 hours to get up and give him his medications. I also had a baby monitor in his room so I could hear if he started to struggle. I would rub his back and try and calm him down and if that did not work he then needed a dose of his breakthrough medication whether it was during the day or night. I constantly listened for the rhythmic sound of his two oxygen machines. At times Dad was difficult to handle due to his large doses of medication however I knew when that happened it wasn’t my Dad but the medication that was talking or acting out.

I helped Dad dress and attended to his hourly needs. The only need I did not handle was his personal hygiene where Palliative Care arranged for someone to come in a few times a week to bathe Dad. He needed to maintain his dignity with me, his daughter. My home became a revolving door with nurses, respite workers, home-care workers, oxygen and medical supply deliveries, doctors, friends and family at all hours of the morning, afternoon and evening.

While I had three sisters who provided some relief for me on a limited basis due to their schedules and they had families, I was Dad’s main caregiver and I would not have traded that for the world. The last few years of his life became very hard but the time we spent together was wonderful. Dad never wanted to be a burden and when he asked me if he could move in with me earlier in the disease there was no hesitation. I said yes immediately as I knew his path was going to be difficult, painful and terrifying and I needed to help him through it. I wanted to do it. I loved him.

When Dad was at the end of his journey he knew it and I knew it, he asked to be taken to the hospital. This was December 3, 2010. He did not want to pass away in my home and leave me with that memory. We went to the hospital by ambulance and he was joking all the way there with the paramedics and myself. He knew it was his last ride and commented on that. Within 11 hours of getting to the hospital he passed away. His fight was just over 3 years however in thinking back he did have the terrible cough for about a year when he was looking after Mom before she passed.

It was so terribly difficult coming home from the hospital to the silence in my home. I was so used to the hypnotic sound of his two oxygen machines and they were no longer running. It was a few days until I was able to fall asleep without the sounds. I felt so alone even though one of sisters stayed with me.

I miss my Dad and Mom so much but know they are in a better place and no longer in pain. This ugly disease is still taking a toll on my family with my Mom’s sister just recently being diagnosed with IPF. I am encouraged by the research being done on the disease both in Canada and the States. We need to keep up the fight against this terrible disease and whenever I have the opportunity to bring the disease to the forefront I do, including writing to my provincial Health Minister and anyone else who needs to be made aware of the disease, new medications and the strides made in managing the disease.

Thank you once again for the recognition. I am honoured.

Patricia Garcia

4. Pat & Isidro Garcia & FamilyPatricia Garcia

City: Welland, ON
Nominated by: Tammy Garcia, Daughter

Nomination
I would like to nominate my mom Patricia Garcia, for taking care of my Dad for years while he suffered from Pulmonary Fibrosis.

It was January 2011 when my Dad was rushed to the hospital from work, his lung had collapsed. He was undiagnosed at this point, and had a bronchoscopy the day before and because his lungs were already so fragile it collapsed. We had no idea at this point we were about to go on a long journey, and my Dad would never return to work.

My parents live in Welland, and my Dad was admitted St. Joseph’s in Hamilton for about 6 weeks while they tried to figure out what was wrong with him. My mom, who has a full time job, had to juggle commuting to Hamilton to see my Dad while working, and not knowing what the outcome would be, although my mom never said it, I know it was hard and lonely for her.

He was finally diagnosed with Pulmonary Fibrosis, and then the process began to be put on the lung transplant list, my mom’s commute was now a bit further, as she would take my Dad to Toronto for multiple appointments, still while working full time.

My Dad finally got on the wait list for a lung transplant, and the wait began. He slowly got worse and worse, with each small cold setting him back that much more. My mom would still continue to work because she had no choice, but would still come home for lunch everyday and take care of all the chores around the house, which broke my Dad’s heart to see her doing everything when he couldn’t help her at all. This was very difficult for my Dad to see and accept, but my mom just kept on going and supporting.

My Dad received a lung transplant on February 3, 2014, it was may parents 38th Wedding Anniversary. The months leading up to this were very tough and scary for my mom. But she remained strong throughout the whole process for my Dad and her kids.

My Dad is still recovering but doing great, my mom still works full time and takes care of my Dad. It is not easy being a caregiver, but my mom has made it look much easier than it is. She is a rock.

Isidro Garcia lost his fight to pulmonary fibrosis on October 13th, 2014.

Personal Story
My Husband’s health began to deteriorate in late 2011. In early 2012, he was hospitalized with a pneumothorax and was in and out of the hospital that year until he was finally diagnosed with PF. He was put on home oxygen that spring and started his assessment in October, 2012 for lung transplant. On January 16, 2013, he was listed for a double lung transplant – currently the only hope for PF.

The hardest part of waiting is waiting. My Husband’s oxygen requirements increased as time went on and he was able to do less and less. He did his best to remain independent and do everything for himself, even though the simplest tasks became difficult. The winter turned to spring the spring to summer the summer to fall with at least one hospitalization each season. Finally, in January, 2014, he was hospitalized for the last time. He was very sick at this point and, while we waited for a miracle, it was getting increasingly difficult for him to get out of bed for a daily walk. He was always a very positive person, always knowing his turn would come, but he was slowly giving up and this was very scary to watch. Thankfully, we were one of the lucky ones that got the call. My husband received his double lung transplant February 3, 2014 on our 38th anniversary. We have our lives back. Throughout the year we made friends with many others that were suffering with PF, and not all of them made it through the wait for transplant. This is the unfortunate reality of this disease.

I continued to work throughout the year of waiting. Physio was 3 times a week – twice close to home and once a week we made the 2 hour journey to Toronto. I would take one day off a week from work for the Toronto journey, and I had help from my children for the local therapy. This routine became our sanity. Not only did it become our only outing as time went on, but it also gave us the chance to be with others that were going through the same thing and the opportunity to share our stories with each other.

One of the most difficult parts of being a caregiver for a loved one with PF is the uncertainty. Not knowing if PF is going to beat you and take away our very special and much loved husband, father and papa. Our children’s love and support was vital in giving us the strength to make it where we are today. Thank you for all you have done and continue doing. We also received plenty of support from family throughout the waiting which meant so much to us.

We are so blessed to be one of the lucky families that had a happy ending to our story, and we are forever grateful to have survived this devastating disease.

Thank you to the PF Foundation for bringing awareness to this deadly disease.

Update

I sent in my story on October 7 to the Take a Breather Program. My Husband was doing very well and we had nothing but hope that he would continue to do well for years to come.

On Thursday, October 9, my Husband became ill with what I thought was a stomach flu. I took him to the hospital early Friday morning. His condition worsened and on Monday, October 13, Thanksgiving Day, he passed away. It was a shock to us all and the doctors are still unsure what caused him to deteriorate so rapidly.

We are very thankful for the 7 months of good health he had. Just a few weeks prior to his passing we were dancing at my Niece’s wedding. If it weren’t for the wonderful transplant program at Toronto General Hospital, and especially Isidro’s organ donor and her family for giving him a second chance, we wouldn’t have been able to share these memories. We are so grateful for the chance he was given, and the extra time we got to spend together was a gift that we will cherish forever.

Malcolm Haylock

5. Malcolm Haylock and Barbara BarrMalcolm Haylock

City: King City, ON
Nominated by: Barbara Barr-Haylock, Wife

Nomination
My husband Malcolm Haylock is my rock! I consider myself a strong person — certainly strong-minded but also of body. I don’t need Malcolm to make me strong but Malcolm is the rock on which I stand. He is my stable rock that enables me to be strong.

I’m too independent by nature, and still can do everything for myself including take care of the house, shopping, cooking, etc. Malcolm does his share. He should be retired and enjoying a relaxing retirement but unfortunately finances dictate that he do a minimum wage job just to keep us going because I am unable to work outside the home. But he gets to hang out with car guys and his friend who is an amateur car racer. Besides the financial aspects, Malcolm being out of the home during the weekdays helps me a great deal. I am a person who needs my space and time to do my things. Also I get joint custody of the TV remote during the weekdays

Malcolm is a relatively self-sufficient person, has his own interests as well, and doesn’t look to me to be the centre of his world. We’re close and there for each other but we can function independently. This symbiotic relationship helps me tremendously right now as I turn a great deal of my attention to learning about PF (in particular IPF), managing my IPF, helping others to learn (yeah, knowledge is power), and being involved in my advocacy work especially with CPFF. He knows this is important to me and if he were a selfish person he would probably be demanding that I put more of my time and attention into him.

As my disease progresses, and I move closer to being placed on the transplant waiting list, I encourage Malcolm to look after himself now because I’m going to need him so much later. I wouldn’t be able to take this journey without him but he is not just a valuable resource to me but my cherished life’s partner but I know I don’t show him that enough and yet he knows. I hope our time is not too soon to end.

Oh by the way, did I mention that Malcolm is my 1st and 3rd husband while I’m his 1st and 4th wife? We were married for 10 years, apart with others for 21 years, and hooked up again in 2000 and been together every since. As in most relationships, it’s not perfect. There are days I shake my head and more and wonder why I love him. And then I remember. It’s because he puts up with me and I know that is no easy job and he loves me for who I am. I couldn’t ask for a better partner.

Personal Story
Living with someone who has IPF is a life changing experience for both me and Barbara. Everything has to be planned out. Even short trips have to be planned particularly how many liquid oxygen (LOX) portables need to be filled and taken on any trip. Transporting LOX safely and yet conveniently in the car has required a reduction in the passenger space available. Fortunately we have a handicap permit so parking when shopping generally gives Barbara easier access. Many things are no longer possible. Oxygen limits the time away from home and prevents as overnight trips unless planned well in advance. A recent (first) long trip to the ICLAF conference in Quebec at Mont Tremblant almost didn’t happen as we found out liquid oxygen is not available in Quebec! Five portables plus a low-flow portable oxygen concentrator got us there. During our stay, our hotel room contained a high-flow concentrator (maximum 10 lpm), a portable concentrator (maximum flow 3 lpm), 24 E-tanks, and a M-tank in case of power outage. Barbara when walking requires 8 lpm and 2-3 lpm when sitting. I spent quite bit of time at the conference bringing oxygen bottles from our hotel to the conference hotel as well as bringing food and drinks to her during presentations so she didn’t have to negotiate the crowds.

One lives with the constant noise of the oxygen concentrator (similar to room A/C) but the biggest issue is the 50′ of plastic tubing that attaches Barbara to the concentrator. That is always lying on the floor ready to catch on my large feet, then potentially rip the nasal cannula off Barbara’s face – not good! Or as Barbara moves around, the tubing can get caught on the furniture with similar results that result in a sizeable reaction from Barbara.

IPF seems to have shortened the level of patience for both of us as well as increasing our stress levels. Hearing Barbara struggling to cough up fluid from her lungs several times a day is both disconcerting and stressful. Getting involved with the CPFF has especially helped Barbara manage and understand IPF and also has helped me. Our CPFF-sponsored attendance at ICLAF conference was definitely beneficial for both of us.

Due to IPF, Barbara has good days where life is almost normal except for the oxygen hose to which she is attached. She can do her exercise, typically walking 2.5 3 mph for 2 miles. Then she could have a couple of bad days when physical activity is a struggle beyond looking after her personal needs and she manages her day with mental activities. Her symptoms can be exacerbated in the winter when Barbara will have more bad days than good days.

Barbara has been unable to work for several years. I continue to work part time since money is very tight for us. Travelling to the UHN lung clinic on a quarterly basis is costly (time off work, car and gas, and parking). In March 2013 Barbara was hospitalized in Newmarket for 10 days – another costly challenge. Same thing when Barbara and I attended the UHN lung transplant assessment in June 2013 for 5 days.

Barbara and I both enjoy barbecuing all year round. Our current BBQ is falling apart so we plan to use some of the money to buy a new BBQ that we will both enjoy. Beyond that we have not formalized our plans. A dinner for two at our favourite restaurant in King will be in the cards as well. Existing on a small budget while also dealing with IPF tends to make us averse to large, one time expenditures and we tend to find enjoyment and a break in the routine through some of the smaller things in life – even catching a movie out!

Kathryn Deans

6. Kathryn_Bob_DeansKathryn Deans

City: Hamilton, ON
Nominated by: Bob Deans, Husband

Nomination
I was diagnosed with IPF five years ago after complaining of a chronic cough and shortness of breath. At first the symptoms were easily managed, and my condition progressed at a fairly slow rate. Since that time my condition has declined to the point that I require supplemental oxygen. I am still able to work with some limitations, but I cannot do many of the things that I once took for granted. Household tasks such as cutting the grass or shoveling snow now fall to my wife Kathryn, who has been a great support to me ever since we first met.

Not long after I was diagnosed with IPF, Kathryn was diagnosed with breast cancer. I was still feeling pretty good at that time, and I was able to be of some help to her as she underwent two surgeries, chemotherapy, and radiation. She has been cancer-free for almost five years now, and seems to have come back stronger than ever. I know she doesn’t always feel great, but she is determined to tackle life head-on, and will not let anything slow her down.

Kathryn attends all of my appointments with me and makes sure I eat right and follow doctor’s orders. She has taken on most of my homeowner chores and is more than understanding when I am tired or do not feel well.

We have made a number of improvements to our home over the years, as most homeowners do. Roof, furnace, windows etc. plus a number of DIY projects. Shortly before I got sick we embarked on a renovation of our bathroom, which still has all the original fixtures from when the house was built in the mid-seventies. The sink is damaged, the fixtures are a dated yellow colour, and the tile is falling off. With our physical limitations we have not been able to see the project through. There is a brand-new toilet sitting in a box on our landing, and a vanity at the foot of our bed. I know that Kathryn would love to see this project completed, and a $1,000 award would go a long way toward paying a contractor to help us with things like replacing the bathtub and tile, installing the toilet and vanity, and flooring.

Kathryn has been my angel of mercy, and it would mean a lot to her to have this project finally completed.

Thank you for your consideration.

Personal Story
Six years ago I told my husband to go to the doctor’s for a check- up. He would clear his throat frequently. I thought he had allergies. A week later we had a diagnosis of idiopathic pulmonary fibrosis. I remember the resident saying on average most people live 2-4 years without a transplant, but we had caught it early.

For the next year we kept to our routine, telling our four children dad is tired because he has a lung condition. Then almost exactly a year after his diagnosis I was diagnosed with breast cancer. I had two operations, chemo and radiation. Bob was my caregiver. I went back to work six months later, but as Bob’s condition worsened, I found my job in retail management, combined with taking on more household chores and home repairs, too much. So I switched to a part-time retail job close to home.

This past year Bob’s health has declined fairly quickly. He has been on oxygen since May and has been referred for a lung transplant. He is no longer able to work full-time, but continues to work part-time at a job that he loves. He even earned his public relations designation after becoming ill.

Looking after Bob has taught me many things – patience, understanding, and what’s important in life, along with a lot of medical information while attending his frequent appointments. We no longer sweat the small things. I think our whole family, including our four children aged 17 -30, looks at life differently now. I have my ups and downs about the uncertainty of our situation, but, then I think of my husband who looked around the hospital waiting room and said he was lucky because there were people in worse shape than him.

Christine Greenslade

7. Christine and GregChristine Greenslade

City: Maple Ridge, BC
Nominated by: Greg Greenslade, Husband

Nomination
I am nominating my wife. We sold our home to move in with her parents, who would otherwise be in a home. She looked after them and me with doctor’s appointments, cooking three different meals a day, cleaning, yard work, shopping, and washing. We then we moved back to Vancouver to be close to my doctor so I could get on the transplant list. All her hard work has paid off, as I am now on the transplant list as of May 29th. She is in a need of a break, and to be appreciated from someone on the outside.
Personal Story
My name is Christine Greenslade. I am 55 years old. We live in Maple Ridge, BC. I am retired as of now since my husband’s illness with pulmonary fibrosis. Greg has had pulmonary fibrosis since 2005. I can say that it has changed our lives forever. I am the main caregiver and I also help out with my aging parents. We still try to live life to the fullest but there are things Greg cannot do any more. As the caregiver to my husband, I now have to do all the things that can no longer do. Some days it can be become a little too much. He also feels bad that he wishes he could do more. But I am so grateful he is still here with his family. Our goal is to fight this illness and inform our family and friends how they can too. I also might add that my husband is always so grateful for the care I give him, and I am honoured that he nominated me.

Mary Jonsson

8. Mary Jonnson and momMary Jonsson

City: Ottawa, ON
Nominated by: Susanne Feely, Sister

Nomination
My eldest sister, Mary Jonsson became my mother’s full time caregiver in 2011. My mother moved from Toronto to Ottawa three years ago as her health had declined.

In Feb 2013, my mother, Mary Feeley was diagnosed with IPF. In Oct 2013, she started on oxygen 24/7. My mother was 71 years old at the time of her diagnosis but was never a smoker but she did have rheumatoid arthritis and fibromyalgia prior to her diagnosis. Every day from the time of diagnosis was a constant struggle for her to do the smallest little things for herself.

My sister dedicated her days to making sure that my mother made it to her numerous medical appointments, always made herself available in a flash when my mother called in the middle of the night with an issue with her oxygen or breathing, made her meals, cleaned her apt, did her grocery shopping and made sure my mom’s life was still filled with the things she loved, arts, nature and family. Since Feb 2013, my sister made the ultimate sacrifice and became my mother’s full time caregiver so that she could continue to maintain a good quality of life and live independently.

On June 5, 2014, I am sad to say that my mother lost her brief battle with IPF at the Ottawa Civic Hospital. She took her last breathe at 5:45pm that day while five of her children and their spouses stood beside her.

My mother was a charismatic and elegant but a simple farm girl from St. Boniface, Winnipeg who appreciated the small things in life.

My sister like my other five siblings would have done anything to give my mother more breathe, more oxygen and more time to battle this disease.

Who cares for the worn out caregivers after their battles with IPF are over and they are faced with a huge emotional void. What is a full time caregiver like my sister left with after a year and half of 24/7 constant care?

I don’t know what the answer to this question is. But what I do know is that caregivers make the ultimate selfless sacrifice so that their loved ones with IPF maintain a high quality of life.

IPF is not an individual a battle. It is one that includes daily selfless battle of the caregivers. I tip my hat to my sister and the full time caregivers for their endless efforts.

Sadly, Mary Feely lost her fight to pulmonary fibrosis on June 5th, 2014.

Personal Story
My name is Mary Jonsson, I am the eldest of my parents’ six children.

My husband Joel and I moved my mother from Toronto in 2011 where my mother had lived for 50+ years. We were looking to afford her a healthier lifestyle than the one she had in Toronto and were looking forward to spending more quality time with her since my move from Toronto in 1990. My mother’s health had always been a challenge; in fact, she moved here only two months after her hip surgery and her mobility was limited. We gently encouraged her to get active with walks in the garden and occasional swims in the apartment pool. She recovered well and we had fun, too!

It was only in February 2013 that we began to get the idea that there was a possibility of a chronic lung issue. There were many trips to the hospital, which, thankfully, is literally up the street. We became familiar with the staff in the ongoing challenge to find a name for what was ailing my mom. It was frustrating to come up against so many false diagnoses; how do you fight an invisible enemy? My mother’s courage and drive never failed. It was very confusing for my husband and I to see her walk up and down the beach and play in the water all last summer and then be unable to walk across her one bedroom apartment without her oxygen dialled up to maximum two months later. Innocently, Joel and I believed that it maybe as easy a fix as getting more exercise or adjusting her oxygen intake.

My mom lived two blocks up the street from us in Ottawa. She jumped in her scooter, which she loved! and zoomed down to our place on May 11 for Mother’s Day. I spoiled her with a BBQ rib fest with all the trimmings. She took her scooter in our backyard for the first time and raced around with our dogs, who she loved. We had pound cake and ice cream for dessert. It was the last time she came over.

I am grateful for the ‘Breather’ award; it was an unexpected surprise. It is a lovely gesture to be appreciated as the primary caregiver; as the oldest child, I was groomed from childhood to be my mom’s right hand man, so to speak, and as such, the care I gave her, supported and assisted by my husband, was second nature. Take care of your own. Although, it was a frustrating and confusing experience for both him and I, we are happy that she did not suffer long. The disease, in her case, was very aggressive and it took only about nine months before it got the best of her. She passed on June 5, 2014, holding my hand.

Thank you, again, for the support and recognition; it is so thoughtful.

Sheila Kennedy

9. Sheila KennedySheila Kennedy

City: Sydney River, NS
Nominated by: Peter Kennedy, Husband

Nomination
Living with Idiopathic Pulmonary Fibrosis (IPF) isn’t easy, but I believe, and have often said, that it’s more difficult being the support person. The individual afflicted with IPF knows how they feel and their limitations, but the caregiver can only imagine what it is like as they stand by their side. Thank goodness I have Sheila; my wife, the love of my life and my support person. My late father told Sheila many years ago, “The smartest thing Peter ever did was to marry you.” I couldn’t agree more.

In the fall of 2007, at the age of 52, I was diagnosed with IPF. I knew this would not only affect me, but that it would impact our entire family: my wife Sheila and our three beautiful daughters, Lisa, Tara and Laura. At this time, I was in the early stages of IPF, and we decided to carry on trying to live a normal life. I was co-owner and a practising veterinarian in a very busy animal hospital. Sheila was the hospital office manager. Prior to that position, she worked as a Nuclear Medicine Technologist and volunteered in palliative care. Her background in the healthcare system and her genuine caring nature was certainly going to be put to the test.

Sheila’s father had died of a heart attack when she was 16 years old. She lost both her mother and only brother to cancer, and was now facing the possibility of losing her husband. Knowing that a lung transplant may be the only option to extend my quality of life, we agreed to this, should the time come.

There is so much behind the scenes when dealing with IPF that most people are unaware of, especially as the disease progresses. This is where Sheila’s strong character came into play. For those who are fortunate enough to know Sheila, they know that she is a fun-loving, social type of gal. Besides her caring and compassionate side—which is obvious to all— Sheila is a take-charge kind of person. She always wants to be informed and updated. My health issues were no exception. This characteristic was certainly beneficial as we began and continue on our journey.

My illness slowly, but predictably progressed over the next few years. With this, Sheila’s tasks increased. Never once did I hear her complain, but I know it affected her both emotionally and physically. After my second assessment by the Toronto General Hospital (TGH) transplant team in August 2012, I was told that if I was still interested in a lung transplant that the time to relocate to Toronto was upon us. Lisa, our oldest daughter who is a Charted Accountant, was working in Charlottetown, PEI; Tara, our middle daughter who is a Clinical Psychologist, was working in Halifax, NS; and Laura, our youngest, was also in Halifax completing her final year of Public Relations at Mount Saint Vincent University. The nest was empty. There was never any doubt about leaving for Toronto when the time came. For me, it was a life or death situation. For Sheila, she was giving up so much. She was leaving our children, her friends, work, her social network and our home.

On November 5th 2012, Sheila and I departed for Toronto. One week later, I was placed on the transplant waiting list, not knowing if and when donor lungs would be available. At this stage, I was on supplemental oxygen with the exception of sleeping at night. Looking after me was now a full-time job for Sheila as placement on the transplant list meant further responsibilities. Attending physiotherapy sessions three times per week was mandatory. The duties of all support persons was to record our readings after each exercise interval, disinfect the equipment after usage and inform the physiotherapists of any abnormalities. Weekly support group meetings were recommended and quite beneficial. Through physio sessions and support meetings, we formed a close group of friends. We all had something in common—we were playing the waiting game for new lungs.

In the next few months, my health declined. I arrived as a status one patient, progressed to a status two and shortly after, a status two rapidly declining. Emotionally, it was getting tougher on both Sheila and I. Would time run out? On March 10th, we got the call we were hoping for. Unfortunately, it turned out to be a false alarm as the donor lungs were damaged and not usable. We later learned that this is quite common in transplant world.

Easter was approaching and being the thoughtful person she is, Sheila decided to have a few transplant hopefuls and their support people over for Easter supper. The guest list was limited as you could only put so many friends in a 700 square foot apartment. The invitations were out. Unfortunately, in the days leading up to our special gathering, I picked up a respiratory virus and our Easter party had to be cancelled. Instead, Sheila and I spent Easter Sunday at the emergency department of TGH and later that day I was admitted. After a worrisome, sleep-deprived night, Sheila received a phone call the next morning informing her that a donor set of lungs had come in. Although it was April 1st, this was no April Fool’s joke! Eleven hours later, we kissed each other goodnight and I was wheeled through the operating room doors. I can only imagine the stress and emotions going through Sheila, as well as our three daughters back east, awaiting the outcome. After a nine-hour surgery, I was now the recipient of two new lungs.

After 18 days in hospital and being treated by the best doctors and nurses as well as the ultimate pampering by Sheila, I was released. Having endured the pre-transplant wait and undergoing the surgery, we believed the hardest part of the journey was over. We were wrong. One week later I was readmitted to TGH with a lung infection. In the next 10 weeks, it seemed like complication after complication (at least to us); several nasty lung infections, low platelets, pneumothorax (air leaking into chest cavity), fluid around the chest wall and difficulty swallowing for a period of time. In this amount of time, I lost 30 pounds. My doctors told me I was a very sick man. Sheila continued to be by my side.. This involved spending twelve hour days at the hospital looking over me and attending to my needs and wishes. She pampered me with head rubs, dry shampoos, and leg massages. When my appetite was poor, she delivered home cooked meals and always with a smile. Sheila always made sure we were well informed of my current health status. A background in the medical field for both of us can be both advantageous but scary. At times, she needed to use “tough love” on me; forcing me to do my exercises and laps around the ward, when I did not feel like it. She knew they were vital to my recovery despite my protests at times. Even with the best medical team in the world, I truly believe that I would not have made it through this very difficult period if it were not for all of her love and encouragement.

Three months post-surgery, I was released from hospital once again. After two months of physiotherapy, weekly clinic appointments and testing, we were given the green light to go home. On September 1st, five months post-transplant, we booked our flights and headed for home, Cape Breton, N.S.

It is now almost 16 months post-transplant and both Sheila and I realize that this is a life long journey and one that we are on together. Although we have always been a strong family unit, I believe this journey has strengthened our relationship and love for each other.

Friends and even strangers often ask Sheila how I am doing., but she is rarely asked how she is doing. I am sure this holds true for most support people. Unless you have gone through similar circumstances, most people do not fully understand just how much the caregiver goes through, both physically and emotionally. To my transplant family, you are all very special people and I feel blessed to know you! I’d also like to thank my donor, my donor family, my beautiful children and my wife Sheila, the love of my life! She has truly been an inspiration to our entire family and I would like to nominate her for the Take A Breather award to show my appreciation for all that she has done for me over the past few years and our life together.

Personal Story
Being a caregiver for someone with IPF is a lifelong journey. For me, this began at the time of Peter’s diagnosis in 2007. I accompanied him to doctor’s appointments, tried to find out information about this unknown disease and prepared ourselves as much as we could for what would be an unpredictable future. As his disease progressed, so did my role as his caregiver. I took care of ordering his oxygen, encouraged him to do as much exercise as he could and did much of the planning for our big move to Toronto. Today, 18 months after his transplant, I continue to make meals for him, ensure he takes his medication on time and plan our days as we try to ease our way back into life outside the transplant world. With this, I have very little time to myself. I am so thankful to the CPFF and InterMune Canada for my Breather award, which will allow for some much needed “me-time.” I’m requesting that my Breather go towards a yoga retreat in Costa Rica with Shanti Hot Yoga (a studio in Halifax). During this time, I will enjoy delicious, healthy food, long walks on the beach and, of course, have the opportunity to do some yoga and meditation. With this, I’m hoping to be able to relax and unwind in a beautiful destination surrounded by like-minded people.

Brian Heimpel

10. Brian & MelissaBrian Heimpel

City: Waterloo, ON
Nominated by: Melissa Sulpher, Wife

Nomination
It’s strange for me to think of my husband Brian as my caregiver, but at one point in time, he certainly was.

When I was diagnosed with pulmonary fibrosis, I was 28 years old and we had twin girls who were two and a half, and a 9 month old son. I had visited my doctor frequently over the previous three years about a chronic cough and shortness of breath, but my pregnancies, baby-related fatigue, and allergies became a convenient excuse for my symptoms. I know this is an unfortunate, but familiar story for many people with PF. Once I was finally diagnosed with chronic hypersensitivity pneumonitis, I had less than 30 percent lung capacity, I was steadily losing weight, and I couldn’t even stand up, eat, or talk without being severely short of breath. Although the disease had slowly progressed over the years, it seemed like overnight our lives changed with this diagnosis.

Since they believed my CHP was caused by mould in our house, I couldn’t stay there. The day I was diagnosed, I went home from the hospital, packed a bag, and moved into my parents’ home. Brian and the kids moved in as well a few days later. I would be remiss not to mention that my parents are also saints – how many people would be willing to take five extra people into their home on a moment’s notice, including three children under the age of three?? It was a bit of a zoo, but they were incredibly supportive. They helped care for me, the kids, and also allowed us the freedom to parent the kids without interfering.

Brian took one week off of work to get us settled at our new temporary “home”, where we would stay for six months. The new arrangement consisted of the kids in bedrooms upstairs, and Brian and I took over the living room on the main floor since walking up stairs was extremely challenging.

I could barely care for myself, so the burden of caring for the children fell to Brian. After his week “off” work, he returned to his job working evenings, which meant he generally got home at 2am. Our lovely two year old son was always a good sleeper, but unfortunately also an early riser. When we moved, his crazy early wakeup time of 5am moved to 4am. So Brian would work until 2am and get up at 4am with our little guy. It was exhausting, to say the least!

It was very difficult because I really couldn’t care for the kids at all. I couldn’t even hold them without getting severely out of breath. So all the baby holding, diaper changing, story reading, peak-a-boo games, building towers, and cuddling sick kids was Brian’s responsibility.

Not only was he working full-time, caring full-time for the kids, living in his in-laws’ house, but he also had to help take care of me. This was challenging for Brian on many levels. The sheer exhaustion of everything he was doing cannot be overestimated. I think it was a toss-up of who was more exhausted, me from the struggles of just trying to breath, and him from getting so little sleep and having so much work to do.

I am the stubborn type, so I often insisted on completing tasks on my own. About once or twice a week I would attempt to have a shower. In hindsight it really was too much work for me to do this on my own, but it is difficult giving up those basic self-care activities. So Brian would check up on me to make sure I was still all right, and get me a towel out of the drawer, and dry my hair, and help me get dressed. He was always gentle, and patient.

The period of time when we were living at my parents’ house after I was first diagnosed with PF was very stressful. I still have a hard time fathoming the stress Brian must have felt. In a sense it’s easier to be the patient. There is something incredibly powerless about having to watch someone you love suffer. He would sit beside me when I was having coughing fits so severe that I would be panicking and almost pass out from shortness of breath. That is not an easy task. He couldn’t touch me because it would break my concentration, but he would sit beside me and offer support and comfort me with his presence. He would interpret my hand signals for water, or a Kleenex, and get me what I needed. There is a fine line between allowing the person you are caring for the independence they want, and providing them with the care they need. I’ll be the first to admit I didn’t “take” to being cared for. So Brian really had to help me when I would let him, allow me to struggle sometimes, and find ways to covertly provide the care I needed without taking over. It really was a thankless job!

I know I am one of the lucky ones. After a course of prednisone, my lung capacity jumped to 50 percent, and eventually almost 70 percent. But I’ve had flare-ups over the last couple of years requiring further treatment with steroids and other immunosuppressant medications. These medications cause side effects like fatigue, difficulty sleeping, and mood changes to name a few. So once again Brian is doing more than his fair share of taking care of our family, all while dealing with my crazy mood changes. It’s hard when your partner becomes a different person, which is inevitable with a chronic illness. And balancing the caregiver aspect with the partner aspect is also challenging.

Luckily the period of time that I required caregiving per se was relatively short. He doesn’t need to wash my hair any more, or help me get dressed, but he does a million little tasks to help care for me and our family. I still require oxygen with activity, so I am unable to work. He works two jobs, along with managing two rental properties we own. He cleans the bathrooms. He takes things up and down stairs so I don’t have to. He comes to all my appointments with my respirologist in Hamilton and advocates for me by asking the questions I forget to ask. He reminds me to take my medication. He gently – and sometimes not so gently – reminds me to slow down and take care of myself.

He also still does more than his share of the childcare for the four children we now have – aged seven, seven, five, and two. He plays baseball with the kids and helped them learn to ride their bikes when I physically couldn’t do it. He makes school lunches, he cleans rooms. And yes, he still gets up early with the kids when I can’t drag myself out of bed at 6am – even when he’s worked until 2am.

I am a very private person, and it’s difficult for me to share with people the challenges of having PF. It’s strange because I look healthy, and I’m active with the children, so most people don’t know that I have this chronic illness. Brian is the only person who knows the full extent of my challenges. When we are out with a group of people, he can instantly tell when I’m out of breath just by looking at me, or listening to my breathing. He’ll take over to help me without me saying a word.

I’m extremely thankful that we have the support we need through our families and community, and I’m also extremely thankful for my currently stable health. I know there are a lot of other people out there who have larger burdens to bear. Although Brian would say he doesn’t need any “respite” now, I still wanted to recognize what an amazing person and caregiver he is. He does everything he needs to do without a word of complaint. Even through the fog of extreme fatigue, he still did what needed to be done without question. He doesn’t ever ask for recognition. He just quietly goes about his business and does what he has to do. I really don’t know what I would do without him. People tell me all the time how lucky I am because he’s such a great father, and he’s always so happy and kind. I don’t know what the future holds for me health-wise, but I know he’ll always be there for me and our family.

Personal Story
When Melissa told me she had nominated me for the ‘Take a Breather’ recognition program, I was surprised. I never thought of myself as her caregiver. For my children yes, but not Melissa. Now when I think about it and read what she has written, I guess I was and sometimes still am.

Before Melissa was correctly diagnosed and we didn’t have oxygen in the house, she would have these coughing fits and she would have to stop everything and just try to breath. I felt very helpless sitting there, because there was nothing I could do. It was also very frustrating when we didn’t know what was actually wrong with her. Early on she would say, “I’m just out of shape. I need to exercise more.” Or it would be attributed to pregnancy or something else. In hindsight I wish I would have gone to some of those earlier appointments and said, “It’s not shortness of breath, she can’t breathe at all!”

When Melissa was diagnosed and we moved in with my in-laws (which was also a challenge), I was left with packing up our house while we looked for a new home. Normally I would be responsible for moving everything. Organizing and packing, that’s Melissa’s department. But I had to do both and I did not enjoy the experience. Couples have their different roles that work for them and I am very glad that she is now healthy enough to be responsible for organizing things again. One of the other things that normally used to be her department was remembering things. Unfortunately, her memory is not what it used to be and I find it very difficult to pick up the slack.

We lived with Melissa’s parents for several months, with our three (at the time) young children. During that time she couldn’t hold the kids or go up the stairs to get them and I was working evenings. Much like the first few months after our twins were born, I didn’t sleep much. And most of those times are a bit blurry in my mind too. I do remember getting up at 4am with our son and taking to the basement in the hopes of not waking the entire household. Sometimes the two of us were in tears, me pleading with him to just let me sleep.

Melissa was on prednisone for awhile which was great for improving her breathing but resulted in side effects of mood swings, weight gain and fatigue. Like she said, it is hard when your partner becomes a different person. The mood swings were and still are the most difficult thing for me to deal with. I’m sure she would argue it was the weight. I remember asking a few times, “What’s worse? Gaining some weight or not being able to breathe?” Sometimes her answer was decidedly more feminine.

It’s hard to not think about what life would have been like if Melissa had never gotten sick. We went to high school together and were both very involved in athletics. We also used to play volleyball together with our friends. When she got sick it was a devastating blow to our co-ed team, as she was the best female player we had. It also makes me sad to think about all the sports she won’t be able to play with our kids as they grow up. Furthermore, our plan for when we were done having any more kids, was that Melissa could work full time and I could work less and be home with the kids. She actually loved her job, liked going to work and got paid more, so it made sense. Now she can’t do the same job and working full time is unlikely.

Melissa is a very private person and she dislikes talking about her condition and is often embarrassed by the whole thing. Most people don’t even know she is sick. Others don’t know how bad it really was and still is. Despite my constant encouragement/nagging she refuses to wear her oxygen in public and sometimes at home. So I am extremely honoured that she nominated me for a Breather through this program. I don’t feel like I need any special recognition, but public acknowledgement from Melissa feels really good. While being a caregiver for someone with PF is difficult and exhausting, it is much worse for Melissa. I’m just glad she’s still here, because I don’t know what I’d do without her.

As for selecting a specific ‘Breather’, I would love to just sleep for an entire weekend. But I think I’ll have to wait until our kids are older. Having the bathrooms cleaned would be wonderful, as that is now my responsibility and it’s hard to find time to do it. Also, Melissa stills cooks almost all of the dinners and I wish I could help out more in this department, but I can’t or don’t. I’m terrible at preparing meals, so it would make me feel a lot better if I could give her a break.

Sureia Ratansi

Post Transplant Oct-17-2014 1.cptSureia Ratansi

City: Toronto, ON
Nominated by: Nizarali Ratansi, Husband

Nomination
MY CARE GIVER…

This is a thank you and appreciation from my heart to my Caregiver, my Nurse at home, my Chauffeur, my Support, and most of all my Wife of 46 years.

The following background to my illness, will help the reader understand the circumstances which led me to write this.

I was diagnosed with Idiopathic Pulmonary Fibrosis about 3 ½ years ago. It was during a routine checkup by my family doctor who saw some scarring of my lungs on an x-ray. I was sent to a specialist who confirmed that the disease was in the preliminary stage.

I was referred to Toronto General Hospital and have been in the care of Lung doctors ever since.

I did not feel any difference in my health at the beginning but it kept deteriorating as time went by until October of 2013, when I was experiencing extreme shortness of breath with the slightest physical effort. I was then prescribed Oxygen by my lung doctor who also suggested I consider a lung transplant.

At this point I needed help. In mutual agreement with my wife we decided I should not drive and she would take over that chore, including many others. I could not function much and had to have an oxygen tank with me all the time.

I was assessed for a transplant in February 2014 and went on the list as of March 5th of the same year. By this time I was very symptomatic and needed a lot of help at home, with day to day chores, getting to the hospital for appointments, pre-transplant physical exercises, tests and treatments. On July 17, 2014, I received the gift of life with a single ` ` lung transplant.
To my wife of 46 years.

I am GRATEFUL to have her at my side.

Since the day I was diagnosed to today, she has been with me every step of the way.

She taken over all the household chores including the ones I used to help with when I was healthy. She also does all the driving whenever needed. If I get bored at home she takes me for a drive or whenever she goes shopping for groceries I accompany her. She will not let me carry a single bag.

During the entire time during my assessment and pre and post-transplant, she has taken over the responsibility of keeping all my appointments with doctors, x-rays, blood work, pulmonary function tests and physical exercise at the hospital. She is an excellent organizer and to-date we have not missed any.

When I got the call from the hospital at midnight informing me that a match was available, she took over immediately. She contacted our son and daughter and then called a cab and got us to the hospital. Together with our children she stayed at the hospital right through the night until the surgery was over the next day at noon. When I woke up after the surgery, she was there with our son and daughter and stayed the next night as well just to make sure I was ok.

I am now in the seventh week post-transplant. I feel much better and stronger and can do small chores to help around the house but she does not let me do anything that involves lifting or physical strain.

Although I am getting better every day, she still gets up early in the morning, prepares breakfast for me and has all my morning medications ready before I get to the table. She then drives me to Toronto General Hospital and drops me right at the entrance so that I do not have far to walk. She joins me after parking the car and accompanies me for every appointment. She always carries a note book with her and jots down anything important discussed at various appointments.

During physical exercises at the hospital she wipes down all equipment I use with sanitary wipes before and after use. She keeps the record of all exercises as recommended by the physiotherapists and marks them on my card.

She has made sure our home is well sanitized at all times. Washing of hands frequently has become habitual for both of us. We have hand sanitizers all over the house and including in the cars and in my pocket.

She has always been a believer of keeping a healthy body with a good balanced diet. She alternates between red meat, fish, poultry meat and beans accompanied with fresh vegetables, grain and fresh fruit and also vegetable and fruit smoothies. I am thankful today because my otherwise healthy body has helped me pull through the transplant surgery with ease and I have made a faster recovery.

Since the day my wife arrived in this country 43 years ago, she has worked a full time job, raised our two children and cared for her elderly parents. A few years ago, my wife finally retired and was set to start enjoying some time for herself, however we soon learned of my diagnosis and the journey began.

Just days before I was added to the transplant list my wife’s father passed away. Aside from taking care of me, she was also an integral part of his care team and has not yet had the chance to grieve his loss.

She has put her personal life on hold and has dedicated all her time and personal energy to look after my needs. She has spoiled me.

I am looking forward to get better in the next few weeks, share the work load and be a contributing partner in our relationship. My aim is to spoil her just as she has done me.
To my wife of 46 years,

Thank you for being there for me when I needed you most. If it wasn’t for you I do not know what could have happened in my future.

Personal Story
While caregiving is certainly not a new role for me, caregiving for one of the most independent people I have ever known has been a unique journey. It was quite a shock for my whole family when we learned of my husband’s diagnosis and even though his disease was idiopathic (cause unknown), we couldn’t help but feel like his sacrifices over the years to provide for our family might have literally, almost cost him his life.

Caring for someone with Pulmonary Fibrosis requires that you, as the caregiver, find a balance between two opposing worlds. The new world filled with endless appointments, stricter routines and increasing anxiety fastens the pace of life right to the edge of unmanageable. The other slower world is an inevitable outcome for patients with Pulmonary Fibrosis. It is a world that is controlled by the effort of every breath.

As I watched my husband’s condition deteriorate, I learned very quickly that I would have to take over many of the responsibilities that we would typically share. Doing so, taught me a valuable lesson about my own strength as I pushed myself past limits I didn’t even know I had. It meant that my own medical needs and self-care would be on hold and that I was embarking on an emotional rollercoaster.

As the primary caregiver, I saw my husband suffer in a way that is indescribable. I witnessed my children’s pain as their worries turned into fear. I commiserated with other caregivers and patients at the hospital. Although I didn’t feel strong I knew that it would take strength to get me through so I dug deep and pushed myself harder.

On July 17th of this year my husband received a lung transplant and we are all so very grateful and indebted to his donor. This journey was hard, really hard, but I don’t regret being my husband’s caregiver even for a moment.

While I know that our medical journey is not over, breathing for me means that our worlds are starting to align again so we can take a more manageable pace in life. Breathing means that I can finally start processing everything that has happened. Breathing means that I can once again start taking care of myself.

Now that my husband can breathe, I can breathe.

Do you have pulmonary fibrosis (PF), and wish to recognize someone special who has gone over and above in caring for you?

The “Take a Breather” Caregiver Recognition Program will be back in 2015. Keep checking our website for program details and updates!