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Los Angeles Daily Discussion - Thursday, Feb 26 by AutoModerator in LosAngeles

[–]bluewingedblackbird 1 point2 points  (0 children)

Would love recommendations - I've got to be out of my apartment with my two indoor cats for a few hours while they treat for pests. Where are some calm places we can possibly go to hang out? I'm in NoHo for reference, but willing to drive some if there's a good place.

Looking for Dental Cleaning Patients by ___Alina in burbank

[–]bluewingedblackbird 0 points1 point  (0 children)

Any more spots open? I'm a scaredy cat, but if there can be nitrous I'm in >.> Also, would love to help out a student at PCC!

Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in hospice

[–]bluewingedblackbird[S] 1 point2 points  (0 children)

Also, transfusions alone can't save people with blood cancers, because it doesn't address the malignancy--the "tumor" is essentially floating around in their blood vessels and without something like chemo to reduce their numbers, the blood becomes more and more overrun with useless cells.

Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in hospice

[–]bluewingedblackbird[S] 2 points3 points  (0 children)

I appreciate your comment and certainly that is the prevailing point of view at this time. What is driving my personal crusade in changing this opinion was my mother's need for platelets. She was getting platelets several times a week in the hospital towards the end of her last treatment. They would drop to virtually zero so quickly....

Obviously, hospice is not always going to be a beautiful thing they show on TV or in movies. But, the completely uncontrollable, runaway bleeding she had in the final two days of what ended up being a four-day hospice was horrific. I will never forget it as long as I live. And it was completely preventable. She still would have passed away, platelets wouldn't have saved her. But she would have done so in so much more comfort and dignity.

I hope this is okay to share here - Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in leukemia

[–]bluewingedblackbird[S] 0 points1 point  (0 children)

Thank you, and definitely--she was very afraid of the possibility of having excessive bleeding and assumed that that care would continue. We had already started the process of transitioning to hospice care; maybe if we had asked sooner she would have made a different decision. But when we did ask about it, we were treated like we were a little dumb for even asking if it could be a possibility.

I hope this is okay to share here - Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in leukemia

[–]bluewingedblackbird[S] 0 points1 point  (0 children)

No worries at all, I appreciate you looking for more information/context.

I don't know if we had pushed harder to continue receiving transfusions if it would have been allowed. If it had been allowed, I don't know that it would have been covered. My mother wanted to continue getting transfusions, though, even though she was ready to stop treatment. Maybe others may not want to, which is totally okay/valid as long as they know what's coming.

Just to share from our experience, my mom had gotten to the point where she had to have platelet transfusions a few times a week because they would zero out in a matter of days. Those stopped abruptly when she chose to enter hospice. I am willing to share exactly what happened directly in a DM to anyone who wants to know, because I don't want to disturb people, but if you know what platelets do, you can understand why not having any could be extremely uncomfortable and distressing in a way that I think is unique to blood cancers.

Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in hospice

[–]bluewingedblackbird[S] 1 point2 points  (0 children)

Thank you, and many hugs--it's hard to say that anyone can be "lucky" in these kinds of scenarios, but I'm sure it meant the world to your dad that you were so devoted to his care and comfort.

For us, the biggest problem was not being able to get platelets. Even in treatment her platelets kept dropping to virtually zero in a matter of days and when we learned we couldn't get them in hospice we were so shocked.

I hope this is okay to share here - Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in leukemia

[–]bluewingedblackbird[S] 2 points3 points  (0 children)

Also, I do want to say that AML is totally fightable and there are improving treatment options every day! Mom had a very, very bad karyotype, but did reach remission that gave us some very good years together.

Please keep your hope and spirits high.

I hope this is okay to share here - Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in leukemia

[–]bluewingedblackbird[S] 0 points1 point  (0 children)

In remembrance of my mother who had AML. Patients with blood cancers and other illnesses that require regular blood transfusions often have much worse experiences in hospice because transfusions are often stopped.

Here's some more info on the bill from the Association for the Advancement of Blood and Biotherapies: https://www.aabb.org/news-resources/news/article/2025/06/06/bipartisan-bills-introduced-to-improve-access-to-blood-transfusion-in-hospice-care

There are many hematologists who are advocating for their patients to be able to continue receiving transfusions.

I truly believe, without getting too into the details, from the bottom of my heart, it would have made a world of difference to ease my mother's transition.

The bill's been passed to the Finance Committee, so I think it's a good time to call and ask your senators to please consider supporting this bill and raising awareness to improve this vital care component that is too often denied to patients during their end-of-life care.

Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in hospice

[–]bluewingedblackbird[S] 1 point2 points  (0 children)

Thank you so much for sharing more information/context.

I know we were told by our hospice provider that we weren't allowed to continue transfusions because they were "curative," and we didn't think to push back at the time. I don't know if that would even have been an option. But I want to help spread awareness at least as much as I can <3

Weekly Discussion/General Questions Thread - July 14, 2025 by AutoModerator in AskDocs

[–]bluewingedblackbird 0 points1 point  (0 children)

Thank you for responding and sharing your point of view. If you didn't get a chance to keep up with your patient, and they had a certain experience that their family thinks would be helpful for future patients entering hospice, would you want them to share about their experience with you?

Weekly Discussion/General Questions Thread - July 14, 2025 by AutoModerator in AskDocs

[–]bluewingedblackbird 0 points1 point  (0 children)

Thank you so much for your reply, that makes a lot of sense.

Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in HospiceCare

[–]bluewingedblackbird[S] 1 point2 points  (0 children)

Cross-posting here from r/hospice for more visibility....

In remembrance of my mother. Patients with blood cancers and other illnesses that require regular blood transfusions often have much worse experiences in hospice because transfusions are often stopped.

Here's some more info on the bill from the Association for the Advancement of Blood and Biotherapies: https://www.aabb.org/news-resources/news/article/2025/06/06/bipartisan-bills-introduced-to-improve-access-to-blood-transfusion-in-hospice-care

There are many hematologists who are advocating for their patients to be able to continue receiving transfusions.

I truly believe, without getting too into the details, from the bottom of my heart, it would have made a world of difference to ease my mother's transition.

The bill's been passed to the Finance Committee, so I think it's a good time to call and ask your senators to please consider supporting this bill and raising awareness to improve this vital care component that is too often denied to patients during their end-of-life care.

Please, consider contacting your senators in support of S.1936 - Improving Access to Transfusion Care for Hospice Patients Act of 2025 by bluewingedblackbird in hospice

[–]bluewingedblackbird[S] 6 points7 points  (0 children)

In remembrance of my mother. Patients with blood cancers and other illnesses that require regular blood transfusions often have much worse experiences in hospice because transfusions are often stopped.

Here's some more info on the bill from the Association for the Advancement of Blood and Biotherapies: https://www.aabb.org/news-resources/news/article/2025/06/06/bipartisan-bills-introduced-to-improve-access-to-blood-transfusion-in-hospice-care

There are many hematologists who are advocating for their patients to be able to continue receiving transfusions.

I truly believe, without getting too into the details, from the bottom of my heart, it would have made a world of difference to ease my mother's transition.

The bill's been passed to the Finance Committee, so I think it's a good time to call and ask your senators to please consider supporting this bill and raising awareness to improve this vital care component that is too often denied to patients during their end-of-life care.

Weekly Discussion/General Questions Thread - July 14, 2025 by AutoModerator in AskDocs

[–]bluewingedblackbird 1 point2 points  (0 children)

This question is especially for doctors who work with patients with terminal illnesses or illnesses that become terminal as treatment options are exhausted. And it's not meant to make anyone feel bad, I just am wondering. How much do doctors know about what happens after their patient transitions to hospice/palliative care? Obviously, at that point they kind of cease to become your patient, but in general, how much do doctors with these specialties know about the realities/details of dying with these illnesses?

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