September 13, 2020 at 3:29 am #52850
What will happen in the final day’s? Is there pain? Is there bleeding? Are you bed ridden? Will you need around the hour help? I can’t seem to get answers.i’m too independent to go through anything like hospice. I’m scared.September 14, 2020 at 7:08 am #52854Kathy StermerParticipant
Difficult to answer as each of us will be different. I was given my 6 month notice in May as no further treatment options but clinical trial or transplant neither of which I’m interested in. Am guessing as counts tank bleeding a good possibility, breathing will worsen with dropping hgb As a widow, have my best friend on board to be with me along with support of hospice staff so my family can be supportive as best able. All involved already know my wishes on this which gives me peace not fear. Currently enjoying every day I can being kept going with every 3 week transfusions. When these get to interfere with my quality of life will enlist hospice to keep me comfortable as per my wishes. I’ve got all my affairs in order and my time so far since quitting treatments last September have been good. Lots of wonderful angels in my life to make my transition as smooth as possible. Love my life but also accept it will end at sometime from something. I try not to get too stressed over that which I cannot control.September 14, 2020 at 9:14 am #52855Pat LawsonParticipant
My Husband was diagnosed in October of 2018 with High Risk MDS with excess blasts. That November he started a clinical trial of Vidaza and Venetoclax. He quit responding to the treatment January of 2020 so he tried Decitibine with no response. His bone marrow biopsy results in May showed his blasts back up to 13%. In June we started with Palliative Care and he has been receiving blood and platelet transfusions weekly. His Hemoglobin drops below 7.3 and his platelets drop below 10 so that is why they give him transfusions weekly. We go every Monday and Thursday to be checked. The Palliative Care doctor said in June that he would probably live 2 months but here we are in September and he is still with us. He spends most of his time in bed but the kids and grandkids come over frequently as do friends and he comes outside to enjoy time with them. He mowed the grass yesterday with our grandson on his lap. He also supervised family building a deck these past couple of weeks he was exhausted afterwards but he did it. It worries me that the cold weather is coming so he won’t be able to get out anymore to see people (he gets cold easy) and we cant let them in because of Covid. We are thankful for every day that we have with him and we will get hospice involved when needed. Hospice will not get involved yet because receiving blood transfusions is considered life saving so they won’t come in until he decides to quit receiving the transfusions or they stop working. I would definitely recommend getting Palliative Care involved they do a great job of helping with quality of life and then can easily transition to Hospice when needed. The nurses in Hospice are like angels walking the earth. Take Care & God BlessSeptember 16, 2020 at 12:17 am #52858
Thank you for the replies it was very helpful. I guess it’s because of this Covid and not being able to see my grandkids especially. Have missed birthdays etc with them and am afraid I won’t be there next year. Just confused and alone. But knowing I’m not alone on this site helps..a little. Thanks!September 19, 2020 at 8:36 pm #52871DonnaParticipant
Pat….What state do you live in?September 22, 2020 at 12:29 am #52884
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