Main fundraiser photo

Lung Transplant Transportation

Donation protected
Woohoo - Thanks to you, Sis got her Double Lung Transplant on 1/11/19.  

Your donations helped me buy the Subaru that took us through snowstorms and winter driving  conditions.  Now we have frequent clinic visits and maintenance and car payments to make every month.
Please contribute of you can!

Our original story is below
++++++++++++++++++++++++++++++++++++++++++++++++++++

What if they call you for your lung transplant, but you don’t have a ride to the Hospital?


 My name is Phil and I’m creating this GoFundMe for my sister Mabel Cecelia Cleveland. 

We have a serious, urgent, immediate transportation problem. Cecelia is a candidate for a double lung transplant at Brigham and Women’s Hospital in Boston and we need a rock solid reliable, all weather vehicle to get her back and forth to all her medical appointments.

Last week we missed two Pulmonary Rehab appointments because of issues with our public transportation provider. And we had to cancel at the last minute and reschedule a hospital stay set up for 2 days of intensive tests - because the car had failed. 
 
With Aunt Margaret - 2016

My sister and I live in one of the hilltowns in Western Massachusetts and our hospital and transplant team is just over a hundred miles away. With moderate traffic it takes about 2 ½ hours, but it has taken as long as 4 hours. And in the winter especially there are some truly horrible driving and road conditions.

Starting in about two weeks, we’ll have to go to Boston at least one day a week for pre-op testing and monitoring. We have two regularly scheduled Pulmonary Rehab session every week. And we will have to make weekly and biweekly trips to the hospital indefinitely after the surgery.

Most importantly, soon we will have to have our bags packed and ready to drive straight to the hospital,  no matter the time of day, the weather, or the road conditions. Because a lung transplant can happen at any time. There is no way to know in advance when that time will be.

When the notification call comes, we absolutely must get my sister and her support people from here to the Brigham and Women’s emergency room right away.

BWH Guide for Patients and Families - 2018

Our current transportation is a 15 year old a Prius with 200K miles shared by 3 households. As much as I love the car I do not have confidence that it is up to the task of making all the appointments ahead of us. The last thing I want to do is be broken down on the side of the road running out of precious time and oxygen when donor lungs are available.

We have some public transportation options, but they are fairly restrictive and not practical for unplanned or emergency travel.

So we’re asking for your help
It’s obvious that we have to get a more reliable vehicle, so we are asking you to help us get a dependable, late model, low mileage, vehicle.

Appearance really doesn’t matter; it just needs to accommodate 4 people with some luggage and 4-5 oxygen tanks. Ideally a compact hybrid SUV, something along the lines of a Toyota RAV4 or Subaru Forester, etc. Gas mileage will be a consideration given the number of appointments that we anticipate and miles we will have to travel.

Cecelia’s story 
Cecelia is 59 years old and is really a decent person, fun and intelligent and I love her very much. She is suffering from Interstitial Lung Disease and Advanced Pulmonary Fibrosis, which is irreversible and ultimately, terminal.

Over the years my sister has provided hospice and caregiving for our Grandmother, our Great Aunt Sophie, Mother’s cousin Ann, and gets credit for adding years of life for her dear friend Larry with her care.

Hardest of all, she took care of our invalid Mother 24x7 for many painful and difficult years before Mom died, leaving Cecelia on her own.

Even with her pain and disabilities, like so many people, my sister managed to tough it out and scrape by for a number of years, working in a counseling center for at-risk kids. But, back in January she had a bad case of pneumonia, spent 10 days in the hospital. She was diagnosed with advanced Interstitial Lung Disease and Pulmonary Fibrosis. She had lost weight down to 94 lb from her normal 120lbs.

When Cecelia asked the pulmonologist about lung a transplant, she says, ”He looked at me like I was from another planet!”.  She was discharged and sent home with no supplemental oxygen, and no at-home nursing care or aid or expectation of recovery.

This all happened in Birmingham, Alabama, and soon I convinced her that she would be better off living here in New England with me. So I rented a van and drove 1200 miles in 2 days to get her out of there.

When I got to her place, it was clear she had been in a bad way for a while. She was sitting on the couch in a dark room, weak, ashen, bedraggled and out of breath. The place was a mess, she had not able to cook or clean or care for herself. She had lost her job because she could no longer work around groups for fear of infection. She was losing her apartment and car because she could no longer make rent or car payments.

Hardest of all she had to leave her precious dog, Iris, who went to live with friends.

Iris

We loaded up the rental van and I drove back to Massachusetts abandoning her apartment and most of her possessions, left her car for the bank to pick up and drove to Mass, where she could sleep on my couch and I could take care of her.

We signed her up with Mass Health within a few days of arrival and immediately met with an excellent respiratory physician, but she soon  had another setback. Another 10 days in hospital with pneumonia complicated by a collapsed lung, 4 days with a breathing tube and  respirator. This time she was truly close to death and saved by the excellent care she received here in Massachusetts.

I am happy to report that today she is doing much, much better. This time when she came home from the hospital she was set up with supplemental oxygen and her excellent pulmonologist has put her on medication that may slow the progression of her disease. She has regained almost all of the weight, goes to a vigorous Pulmonary Rehab twice a week, and is living independently in her own apartment , though still on oxygen 24x7. She is able to cook and clean and care for herself with a bit of help from some truly sweet people who have come into our lives.

Moving in to the new apt - 2018

You will not find anyone with a more positive attitude or more thankful for getting this additional chance at life as a candidate for a double lung transplant at Brigham and Women’s Hospital in Boston!

We are so grateful to all the friends, family and medical personnel for helping to stabilize her condition and giving us hope by letting her into the program.

The kindness of your heart
Please do what you can to help out and you can know that your gift will make a huge difference in a really sweet person’s life and the lives of those of us who love her.

It doesn’t matter whether you do it out of the kindness of your heart, because you trust that the gift will be put to good use, because you want to be a part of this amazing and miraculous process, or whether you’re just that kind of person who wants to do the right thing and helps when you can.

What matters is that we all do what we can to make the road a little smoother for those who are hitting a rough patch.

We are hoping you will help out as much as you can, to join the community of friends, loved ones, service providers and medical professionals, who are working to make this a reality.

And you can trust that you have our sincere, deepest gratitude.

How do you decide?
I don’t know how you decide when someone and their campaign is worth supporting, because there are so many deserving people who are truly in need of help. Today there are a lot of people who believe in Cecelia -

The support team, transplant team, all of Cecelia’s doctors, and Masshealth are investing an incredible amount of time, money, energy in order to give her this life-saving procedure.  And, God Bless Them, there is a potential donor out there somewhere, maybe walking around today not knowing that death is around the corner, who has agreed to donate their lungs so that she might have this chance.

And, she believes in herself, believes that her life is worth the risks and the pain, and believes that if she has to die, she would prefer for it to happen while she is attempting to improve things rather than to die of slow suffocation

So we are asking you to believe in her also, and do what you can to help us give her the breath of life.

Summer - 2018

How you can help
If you have a suitable vehicle that you can donate or loan us for the duration of this medical emergency, that would take care of the problem straight away. If you are within a day’s drive, I can come pick the vehicle up. Beyond that contact me and we can figure out what is most practical.

Sorry we can’t accept donations of vehicles that aren’t up to the tasks ahead. Better for you to work with a local charity who can get more benefit from the donation.

If you can make a monetary donation, anything you can do will help and enable us to move forward to purchase an appropriate vehicle if need be.

Our promise to you
Believe me, we wouldn’t be asking for help if we could do this on our own. Some things are just too big.

We promise you, all of the funds raised will be used to cover costs associated with Cecelia’s transplant. Or, should the worst happen, taking care of the arrangements.  We  are so thankful for the ability to connect with you like this and share Cecelia’s story.

Running out of time, running out breath
Time, as they say, is of the essence. Cecelia’s disease is incurable and will continue to progress, her resistance to any virus or infection is extremely low and her ability to undergo the procedure will diminish as time goes on. No one is saying how much time she has left to get this done.

But in a couple of weeks we find out where she is on the transplant list and the frequent hospital trips will begin in earnest. And we will begin anxiously awaiting the call to get her to the operating room immediately.

Please Donate
So please, please hit the donation button and make whatever contribution you can. And send some positive thoughts and prayers and good vibrations her way. Anything you can do, we thank you so much!! 

I know that a lot of you who are reading this might be having your own financial difficulties and think you can’t afford to donate. Trust me, any amount is truly valued because it sends your message of love and hope to my sister.

What worries me
I’m really getting anxious, because it is crucial that we resolve this transportation issue, it’s really something that’s got to be resolved.

Although our immediate need  is reliable transportation, we have not yet been told what the out of pocket cost will be to us for this procedure. So, it is almost certain we will have an additional campaign down the road to help with the out of pocket expenses that are not covered by insurance. Stay tuned for updates.

thanks,
Phil

P.S.   Sometimes it seems totally miraculous that this double lung transplant can be done. At the same time, I know it is really hard work by dedicated people, good science, and a blue state healthcare system that enables this miracle to happen.  

Everyone deserves a chance to life and health. Please support universal healthcare. Bless you all and thank you!

Back in the Day!!
Donate

Donations 

  • Ruth Nager
    • $15 
    • 4 yrs
Donate

Fundraising team (2)

Phillip S Billitz
Organizer
Raised $15 from 1 donation
Shelburne, MA
Mabel Cleve Land
Team member
This team raised $6,585 from 34 other donations.

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.