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Acute Myeloid Leukemia with Aberrant CD7

Blood Cancers & Disorders | Last Active: Dec 22, 2021 | Replies (41)
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@lodi

Hi Lori-

Thank you for your suggestion. I find some doctors and support team members do respond through the portal, while others do not. Not much we can do about that, but it can be very frustrating as all facilities always suggest the patient portal for communication, but in some cases either ignore the question completely or might reply weeks later. I find communication to be the most difficult part of patient care today. I'm sure this is far less of a problem at facilities like Sloan Kettering, Mayo or other top cancer institutions.

For many of us out here who aren't able to access those top level facilities, it's tough. Hoping that more medical professionals will somehow be offered better incentives to encourage them to join the workforce as the shortages put a lot of pressure on staff. And, their lack of available time means they don't have the luxury of answering many troubling questions. This is disheartening for so many, most especially those with life threatening conditions. After all, we are not buying a mattress, we are buying more time on earth with less suffering for ourselves or our loved ones. It would seem that communication, compassion and concerns about patient dignity, should be a very high priority.

Hoping I am not deviating too much off topic, as this maybe belongs in another section. But I am passionate about patient advocacy. I hope one day to volunteer for the rights of the elderly or possibly a group like yours.

Take care,
Lodi

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Replies to "Hi Lori- Thank you for your suggestion. I find some doctors and support team members do..."
Lori, Volunteer Mentor | @loribmt | Aug 4, 2021

Hi Lodi! You’re not deviating at all. It’s wonderful that you have the attitude, moxie and intelligence to keep fighting for what’s right! We need more people to lead in the battle!

I share your frustration with some of the medical conditions and lack of communication. I was part of that early in my AML illness. I was super healthy. Within 3 weeks I went from walking 10 miles daily to hanging on by one toe from the grave! PCP just kept brushing me off. Each week I’d return telling her I’ve never felt this sick in my life. I felt dismissed because I was 65 and not worth the effort to have a CBC taken…until I ended up in the hospital…the rest is history.

Anyway, we need volunteers for the rights of the elderly! I helped out a great deal when my mom was in a nursing home. I had to be present all of the time to make sure she was receiving the care she needed! We have to be so assertive to keep on top of things. It’s really sad our medical providers are so stretched beyond their limits for all the reasons you mentioned! I was fortunate enough to have top tier care at my local hospital with an outstanding oncology center. And then Mayo Clinic…I’ve never seen anything like the care I’ve received there…. 2 years later and I’m still as relevant as I was while getting the transplant. As my team is fond of saying, “We’re married for life.” But not everyone gets that lucky. Healthcare shouldn’t be left to luck!

As for your wanting to be a volunteer in Mayo Clinic Connect, you already are! You’re a member! We are all here, peer to peer, sharing our stories and experiences to help each other. Feel free to search the groups and jump in where you feel you can contribute! We have a great caregiver group, BMT/SCT transplants…you’ll find me there as well as other SCT patients…survivors!!

Have you looked in other groups?

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