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Oh Angie, please don’t worry… Prayers are appreciated and are good no matter where your spirit resides! Big Hugs back to you…
Your father is quite a bit younger than mine was, plus my dad had other health issues that had to be taken into consideration, so anything stronger than the Trisonex was too risky…. They had been waiting, for what seemed like an endless amount of time, for a new trial drug but by the time it became available, his blasts were too high. For a while his CMML was progressing slowly and then it starting picking up speed.
I think that his down fall though was them (my dad, his wife, the docs.) not being intune enough with the messages his body was sending… Of course, it was also up to my dad or my step. to speak up. The doc. doesn’t necessarily know what you don’t tell him. For example, and I belive this was so neglectful, but his platelet count was quite low and, excuse my by being frank, but he was bleeding a lot rectally; they fluffed it off to having hemorrhoids…My sister and I were very very concerned about this, but were forced out of the loop by my step. and couldn’t advocate for him. Once it appeared bad enough,the doc. put him on antibiotics for a “bladder infection”, though there was little sign of one… The pressure he was feeling on his bladder was from an abcess on his colon that was quite swollen and infected…. This wasn’t diagnosed until it was too late…. My reason for telling you this is to make you aware…. no question is unreasonable. Everything, no matter how small, should be addressed……
Also, if the doctors have anything negative to say, let them tell your mother & you first… Keep his thoughts positive. It is hard enough just being the patient.
Angie, this forum is a wonderful place for support and information, so please stay in touch and if you have any questions, we are all here for you…
With prayers & best wishes,
Kathryn
HAPPY BIRTHDAY & HAPPY NEW YEAR, MARSHA!!!
May your new year be filled w/ love, peace & all your wishes come true!!! You go girl!!!
With love & good wishes,
Kathryn
Oh Patti, I am so sorry for the difficulties you mother and you have had. I sure know how frustrating and scary it is. Good for you for being a “bull dog”… She needs for you to be.
I have thought so much about the advocate situation since my father passed. What do the people do who don’t have family or the family isn’t keyed in and naturally assumes that their loved one is being cared for properly? As I said in another post, hind sight is 20/20 and you bet I would do things differently now that I know… I feel very very strongly about this. I honestly believe that if we’d been allowed to advocate for my father, he might have had a much better chance …. I experienced things in the hospital that just didn’t make sense… like in ICU patients are expected to push their own med. pump when they are in pain… What if they let the pain go too far? It affects their blood pressure… then what? Apparently the nurses weren’t keeping close enough watch on my father’s intake of morphine and I believe this is where his spiral downward began… He wasn’t getting enough… He wasn’t pushing the pump. It got to a point that he couldn’t push it… We didn’t know….. We assumed they were doing everything they could.
Your mother is so blessed to have you. I know how draining it was to fight for her, but believe me, you will NEVER ever regret that you did!!!
You both are in my prayers… I hope things are better for her.
With love,
Kathryn
