I lost my Mariel to Interstitial Lung Disease caused by Undifferentiated Connective Tissue Disease. Barely six weeks after we checked with a dermatologist to complain about some ordinary rashes and fever. ( We were even discharged earlier at another hospital for what they thought was merely a viral infection, after ruling out Dengue ).
C3 ANA test, Lupus panel, Malaria check, TB check, Typhoid check, X-rays, Punch biopsy, Hi-res CT scan all proved negative initially. Until one day, someone mentioned interstitial blah blah. Medrol, Plaquinil, Azythromycin, Pulse therapy, Rituximab, Deep Vein 2-D echo, ICU,Ventilator later didn’t seem to help. I know the doctors did the best they could, but is there really something more I could have done for Mariel? I was with Mariel 24/7 in the last 10 days at the hospital. I suffered too with every dip of the Oximeter, that painful alarm, the Spirometer torture machine and Mariel’s every brave attempt to fight off the disease. She kept strong faith in God through it all until He took her on Sept. 20, 2007. The only reason perhaps I could not bring myself to “hate” God for what happened to her was the fact that she suffered more than my whining self and never wavered. Thus, Mariel is my angel for saving my soul.
Undifferentiated Connective Tissue disease is a cruel, strange, kilometric, treacherous, despicable, double- barreled snob of a disease. I will fight it now for Mariel through my own dying breath.
Dear Bong,
I have come to your website via “the price of love” by Roads. I just wanted to say that I am very sorry about Mariel. I can only relate too well to what you went through as my husband Terry died of IPF – Idiopathic Pulmonary Fibrosis, which is also called Intestitial Pneumonia and all sorts of other names, which still don’t help it to be treated or cured. It is a real shock to see how a visibly healthy, active and smiling person can suddenly die just after 3 months post diagnosis. The scenes from the ICU keep haunting me too. Been searching and searching on the internet for a cure (what use is that now?)…
It will be 2 years on 31st July and I can hardly believe it. Terry came to me in my dreams last night to tell me he had been ill. Sorry about a rample, but I just wanted to say you are not alone.
You strike me as an extremely sensitive, articulate and caring person. Your daughter is lucky to have you and Mariel would be very very proud of you. Hang in there!
I visit this website http://www.merrywidow.me.uk – its forum has been a great help.
regards
Julia
Dear Julia,
Thank you for visiting Mariel’s Garden. It gives me some solace that at least one person out there would have known what Mariel and I had gone through during her short illness. The shock, disbelief and anger had not really gone away completely but right now I guess it’s just Mariel’s all- enduring love and our daughter Sam that have kept me going.
I’m sure you loved Terry very much too, and I wish you all of God’s healing and the promise that someday we will be reunited with our lost love ones in our heavenly home.
Take care, I know Terry and Mariel would want nothing now more than to see us smiling again and looking back at all the great memories they have left behind.
Warm regards,
Bong
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