Login

Linda's Page

Massachusetts CF Cycle for Life

Learn more about this event.

Fundraising Progress

0
10
20
30
40
50
60
70
80
90
100
110+
Donate to Me

Raised: $4,835.00

Goal: $10,000.00

Welcome to my Page

As you all know, Don was born with Cystic Fibrosis.  Diagnosed at the age of 3, he was given 9 more years to live.  He outlived all that prediction, graduated high school, college, got married and started a business.  When Don was in his 50's, he was hospitalized for the first time for a CF exacerbation.  His lungs began degrading quickly and they said he needed a transplant.

4 years ago at this time, Don was just getting on the transplant list. Every night, I was listening to his breathing and thinking how short his exhalations seemed and wondering how much longer we could go on like this. He was cold all the time and very underweight. He was using oxygen just to get up the stairs to get into the house. He was using oxygen to sleep at night. He was spending 3 hours per day breathing medication from a nebulizer. His coughing fits were so bad that I often wondered if he would be able to get his next breath. As happy as we are that Don got a transplant and breathes easier now, we wish that it didn't come to this. People who have lung transplants live under the ever present threat of getting sick and having that sickness cause rejection of the new lungs. We didn't have a choice. Today, 4 years later, people are beginning to have a choice: A new triple combination drug has been approved and is being used by people with CF to avoid ever having to have a transplant.

These drugs have come too late for Don, but the continued work on Cystic Fibrosis will help others and focus on the disease could still Don and others like him who have already had transplants. Also, there are still people with genetic mutations of CF that are not treatable by these new drugs.

 

The added complication that we have is that the vaccines have not worked for Don yet.  So we've been trapped away from friends since the beginning of the pandemic.  We still need more research so that people don't have to have transplants and more research into all the complications that come with transplant (failing kidneys, rejection, and compromised immunity).  So we continue to ride. Please support us. As I have said above, Don and I will match what you give.

 

 

Comments

My Achievements

Ride With Me!

Join My Team Visit My Team Page Register for This Ride

My Achievements