In October 2011 my dad who was seemingly invincible got sick. He was admitted to hospital for 3 weeks where he was misdiagnosed with everything from TB, Pneumonia & lung cancer. Back home he stopped eating & drinking & we took him back to hospital where we were told he was in end stage renal failure & had WG. Within 12 hours he was on dialysis, having plasma exchange & chemotherapy. His breathing became worse & dialysis was met with complications. He had heparin induced thrombocytopenia, multiple pulmonary emboli, nodules in his lungs & everything they were trying resulted in potentially fatal side effects.
He was discharged with about 20 prescriptions & required to attend the hospital every 2nd day for dialysis. Eventually his kidneys regained some function & dialysis stopped - he was glad to have the Hickman removed but his mobility was barely functional, his swollen legs make walking almost impossible & he considered himself as almost being in a vegetative state.
5 months later he is in heart failure, respiratory failure & his kidneys are functioning at 15%. Dr's have informed us his condition is "formidable" & he is not a candidate for any surgical interventions so they try keeping him comfortable. If that isn't enough he has had tremors in his hands since his first hospital admission which are getting worse & Dr's suspect he may be having numerous little bleeds in his brain.
My dad who has always been so proud, strong & healthy suffers every minute of every day. I read your posts to him & we have a giggle as he is always telling Dr's they are using him as a guinea pig. I think he takes some comfort in knowing he isn't alone & others are experiencing this awful disease although he has expressed a desire to hear from people who have heart conditions on top of the WG. I appreciate WG does not define my dad but this disease was the beginning of the end for him. We try to stay positive but it is difficult. People ask if there is light at the end of the tunnel & sadly the light is that he dies peacefully.
Since the day he 1st began complaining of being ill, it has been a hard road. With all of medical sciences advances it seems unheard of for there to be so little knowledge & understanding of this disease. I get angry, I cry & get so frustrated for my dad. I have no recollections of him ever really being ill & to become so ill in a matter of weeks is hard for him. No gradual decline in function & mobility gone almost overnight. At the beginning Drs advised us WG needed to be diagnosed early for good prognosis & dad was diagnosed at end stage - what does that even mean? WG started on his kidneys, moved into hisn lungs & then his sinuses. Did we miss symptoms earlier on?
He has had bad days, worse days & the occasional ok day. Still, who knows perhaps he will surprise us all once again & make a miraculous recovery... He hasn't behaved/responded as expected to date so perhaps that will work in his favour lol
My heart goes out to everyone with WG & their family & friends. My thanks to you all for your stories, it has offered support to my family by just being available...
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