My husband has CF. Just reached 58 yrs old last week, diagnoised at 14 yrs. He received double lung transplant May 1997, thanks in part to my insurance. He was the first CF patient to be transplanted at Emory University Hospital (because he had insurance). He would have had to go to UAB or Duke if we had not had insurance. We have been married now for almost 36 yrs. He is self-employed (39 yrs) and very little health or life insurance. I have insurance with BCBS through my employment of 39 yrs. We've struggled over the years to pay copayments and deductibles but the Lord has provided when it was needed. We've had to stay on top of charges, insurance payments and denials. We are not wealthy, but are rich with God's blessings. Husband has worked many a day when he did not feel like it. Before transplant, he worked (auto mechanic) pulling his oxygen tank behind him when his lung collapsed for the second time...his work ethics are awesome.
We have met the lung donor's mother and the heart recipient. What blessings! Husband and the mother have spoken to many organizations and groups on donation of organs and that of being the recipient.
We have one daughter who is now 30 years old and has given us a beautiful granddaughter age 4. Daughter is now a certified respiratory therapist and working towards RRT. This has been another blessing....she and the granddaughter have been diagnoised with asthma. Neither has CF.
I never considered NOT marrying this man, I love him! Social Security denied disability on him, although no one understands why, for all but the year of the transplant. He had cdiff colitis twice following transplant surgery and almost died, acute renal failure and dialysis. He is now diabetic, has had colon cancer and chemotherapy. He works 40 hours+ each week. He is now 14 yr post-transplant and still going strong. He is amazing! Although my insurance costs more each year and pays less, it is better than being without it.
He must take rejection medications from now on. He is still on prednisone and will be from now on....at this point doctors don't want to rock the boat by changing meds. Because of transplant we've had 14 more years together we would not have had. At time of transplant, doctors stated he may have lived another month--old lungs dripped through their fingers upon removal. My husband had always wondered if he would get to see our daughter grow up, marry, etc. She was senior in high school at transplant. Afterwards he was able to walk her down the aisle when she married 10 years ago. Donor's mother sat with me at wedding and we recognized her son (the donor) during ceremony. He was there when our grandbaby was born. Sweet and precious moments for us all but particularly him. God is good!
I'm just saying even with insurance it is hard, but the outcome has been well worth the struggle!!
when i was waiting for my lungs i looked everywhere for someone to talk to or ask questions about but didnt have anyone so i want to be here for anyone who need's someone to talk to