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June: Widow of Pulmonary Fibrosis Patient

Life is so empty without him.

Sunrise by Sherrill Knaggs, ISN Artist My husband, Eddy, died on April 7, 2002, after over a year of suffering, which was very severe in the latter months.

We had both been married before and the tenth of July would have been our seventh Wedding Anniversary.

Eddy seemed literally to suffocate to death from pulmonary fibrosis, which, in the early stages, was diagnosed as "mild asthma" and "fluid on the lungs" (heart failure).

Eddy had a history of heart problems, including several heart attacks, the last of which was in May 1997. For this he was prescribed Isosorbide Mononitrate, 75mg of Dispersible Aspirin daily, Enalapril and a GTN Spray for Angina. For the fluid on the lungs he was prescribed Frusemide, by injection in hospital and in tablet form at home.

He did not make much progress and was frequently hospitalised with low blood pressure and chest pains, the former of which we now know to have been made worse by the Frusemide, Enalapril and GTN Spray, which all cause lowering of the blood pressure.

He was given many chest x-rays and spent about three weeks of last year in hospital, but, it was not until he had the CT scan that Pulmonary Fibrosis was finally diagnosed. By then, his lungs were very small and his heart enlarged and, over the past year, Eddy went downhill very fast. It got to the stage where he was almost permanently reliant on home oxygen, and, after several chest infections, he was taken into hospital two weeks before he died.

Eddy was seventy-eight and had not smoked for about forty years. He had never ever smoked heavily. Only a pipe and an occasional cigar. Never cigarettes. This was when he was in the Royal Air Force and a few years after being demobbed.

It was suggested that his illness could have been the result of working in the laboratory of the local paper mill for over thirty years and inhaling paper fibres, but, of course, it could not be proved, as we know of nobody else in a similar situation.

I watched Eddy change from an active, vigorous, jovial man who loved cycling and walking and lived a healthy lifestyle, (apart from his great love of fish and chips and toffees, which I succeeded in modifying to some extent!) to a man who became a shadow of his former self, insecure and agitated because he could not do the things he had always done so easily. During his last few months he was virtually bedridden and completely dependent upon oxygen. (One large cylinder would last him approximately twenty-four hours.)

He was a very brave man who tried to maintain his sense of humour, but, once when I told him how brave he was, he admitted that he was terrified. He kept saying, "I will get better," and, "When I am better we'll do this or that." He wanted so much to go back to visit places he knew as a boy. He even wanted to take me to Paris! All I wanted was for a miracle to happen and have Eddy back to his old self, but it was not to be.

One of the most awful symptoms of the illness, which Eddy also found very distressing, was the terrible rasping noise which accompanied his every breath.

His last outing was on our weekly "Dial-a-Ride" Bus, which took us from home to our local supermarket and back again. During his last weeks at home, he was able to go only accompanied by a portable cylinder of oxygen. The courage he showed when walking out to the gate to get onto the bus was unbelievable. He then had to get from the supermarket to the bus and from the bus along our garden path to the front door. On his last trip, for which, (much to Eddy's "shame", as he put it), we had to borrow a wheelchair, he just collapsed into the front door and onto the sofa, fighting for every breath. The fact that he was, by then, unable to get in and out of the bath and had to rely on me for a daily bed-bath, (he was always such a fastidious man about personal hygiene), depressed and humiliated him to such an extent that on two occasions he declared that he wished he were dead. (Then he said immediately, "Sorry, God, I did not mean that.")

My deepest regret is that I was not with my husband when he died. The hospital rang to say he was deteriorating. I called a taxi, but all the traffic lights were red and I arrived fifteen minutes too late. I find it very difficult to come to terms with the fact that I did not say goodbye to him and tell him I loved him one last time.

I know that I am not the only person to have lost a loved one to this terrible disease, but life is so empty without him. Thankfully, I have two lovely daughters, a very kind son-in-law and three beautiful grandchildren, the eldest of which, incidentally, has Cystic Fibrosis.

To Contact the Author

New email address needed 04-30-08 SLE
Old Email Prefix: June
Story submitted 7-12-02
Story posted 7-12-02
Story edited 7-27-03 SLE

ISN Senior Artist: Sherrill Knaggs
Causes of Scleroderma
Pulmonary Fibrosis
Survivor Stories

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

Go to Kamlesh: Husband of Limited Scleroderma Patient

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)