My dad passed away last week and he has been in the hospital for more than 2 months and I still haven’t figured out how things could hav turned so quickly and badly..
My dad is 78 years old and have had blood disorder for a period of time already and have been getting transfusion for approx. 1.5 years but unfortunately it got transformed into MDS last year then progressed into AML in Dec…doc was saying patients under this type of condition usually have a life expectancy of approx. 2 years and I was shocked at that moment but thinking that Doc is probably just giving me the worst case scenario as dad was very healthy overall. Doc recommended dad to start Vidaza treatment and we agreed, after the first round of treatment everything seems fine but 3 weeks later dad started to urinate blood..but at that moment I still didn’t realise how serious it was as dad was still walking around and making jokes calling me everyday on what he wants to eat and I still have that 2 years life expectancy under worst case scenario in my head…he stayed in the Urology ward for a week until he had the surgery to stop his bleeding but unfortunately they couldn’t stop the bleeding so they transferred him back to haematology and oncology department for further examination after 2 weeks in the ward they were finally able to stop the bleeding ( he went through two night of pain as blood clots were forming in his bladder blocking the path..they were able to relieve his pain after doing manual washout of the bladder using syringes so I strongly recommend ppl to suggest manual wash out to the nurses and doc if they encounter similar situation as they didn’t realise where the pain was coming at the beginning).. ..and I was so relieved thinking that he can start the second treatment soon as he is stabilizing and doc was saying as soon as he starts walking again then he can be discharged.
Unfortunately, 2nd wave attacked us in a few days time and it was a lot worse..he started to have internal bleeding from his smaller intestine, the bleed started off very slow but eventually it was like a tap water being turned on, just kept on flooding out. They tried to use endoscopic surgery to stop the bleeding to minimize the invasiveness as he has AML and is under vidaza but unfortunately it was too far down and the endoscope cannot reach the bleed point…and I got a call from the hematologist and surgeons to decide on an open chest surgery to reach into his intestine to stop the bleeding they warned me that if the bleed doesn’t stop dad wont last more than 24 hours but a the same time the surgeon also warned me on how big the surgery is and how high the risk is especially with my dads condition…whats worst is that at the beginning the Hematologist and surgeons had different opinion. Hematologist just saying once the bleed stop then they can treat the AML but surgeons is not too optimistic with the surgery as he is saying under his condition he probably wont be able to wake up from the surgery (50/50 chance he probably wont make it out the surgery table) and even we got lucky and he wakes up he will still hav to struggle thru the recovery process of the wound and other side effects let alone battling with AML and going thru second round of Vidaza. It was the hardest decision for me to make..then after discussing with mum and speaking to 4 surgeons we decided not to carry out the surgery as we know even without this internal bleeding just dad to fight AML alone was already a hard enough battle and we don’t want to be selfish and prolong his life for a few months just because we want him to live longer ….then miracle happened the bleed slowed down and eventually stopped, I was so relieved and happy thinking that dad is stabilizing and he will be able to do the treatment again so I went back to work that week again and be with my son and wife (but I still go to the hospital everday to feed dad and give him massages).
Unfortunately the good time didn’t last two long as he caught pneumonia and none of the antibiotics worked and eventually was moved into hospice and passed away in a week time. I am still not very sure whether he died bcos of pneumonia or clot in his throat that made him suffocate…he was conscious all the way even till his last moment, he called me an hr before just shouted out my name and I just let go of everything at work and hospital in 15 mins and I asked him whether he wants to see his grandson he was still able to nod his head..so I still cant accept the that fact that he couldn’t overcome pneumonia may be he passed away bcos of suffocation and I wasn’t fast enough in sucking out the clot for him and I still don’t understand how someone responded well the first round of treatment still didn’t recover..sometime I ask myself may be if I got him a private room instead of a ward I could hav prevented his pneumonia and if I have learned about this site much earlier I would hav been able to find him more options and made him more energy drinks helping him to eat more so that he can be stronger then I would hav been handled the situation in a much better way……sorry for the long message, just want to share my story with everyone as I understand every AML patient is different and thank you for reading.
