Connect
Comment receiving replies
Well, nine months later with no response from hemo's office and continued high LDH and elevated alkaline phosphatase plus low RBCs, I saw the nurse at hemo's office for my yearly exam.
I expressed frustration with lack of response. Said I assumed that whatever was going on was not an emergency. Asked what I should have done to get response from them.
She said this should have been caught when LDH and alkaline ph were high again in May. Heads would roll, which is no consolation.
Ultrasound and more tests. If the root cause is not ET related, I will be referred back to primary care for further action. So, with holidays complicating things, I see a fairly long waiting period.
Husband and friends say I should have jumped on this sooner. I have always been a very assertive and proactive person. But when you feel tired for months, it's easier to let things slide. Now I feel stupid and ashamed on top of being worried. It is hard to be sick in America.
Replies to "Well, nine months later with no response from hemo's office and continued high LDH and elevated..."
ET's a vampire on our energy. Our strength's squandered on manic cell production, our hearts struggle to pump our heavy blood, our immune systems battle our alien platelets. Who wouldn't be exhausted?
Don't blame yourself, Jean, give yourself a medal. You are doing a heroic (too heroic, I'd say) job of hiding your challenges from your husband and friends.
I am glad the NP finally took your numbers seriously. Can you get your ultrasound and other tests this year? Please keep us posted.
I prescribe daily cat and chocolate therapy for you.
Connect
Hi @nohrt4me,
I sense and feel your frustration my CALR friend. I am blessed to still have no symptoms from whatever I have with my high platelets. I still choose just to take low dose aspirin for my high platelets. You definitely are not stupid. Honestly, I think you were wise not to get too concerned with labs earlier as mine fluctuate greatly as do my emotions. But if I had any symptoms, I might feel differently. Right now, I am just trying to figure out what Medicare Advantage Plan in my area might be better for me to try as I am very frustrated with what I chose my first time doing this once 65. Yesterday, I got a call from them saying that I could finally be scheduled with the hand surgeon to remote the “mass” in my right finger. Before they blew it off as an old injury and no big deal and no “mass”. I really want a new and different group to give me another opinion on what my finger issue is so I declined scheduling my “mass” removal with my current Advantage HMO. I still feel great and do not feel I need to change to a regular Advantage Plan with a Supplement. I have no pain anywhere, even my enlarged finger joint, and my usual tons of energy each morning. I just do not believe I am a sick person and I really am thankful I do not feel that way. Please remember the neuroplasticity of our brains and what we can achieve by knowing that. My daughter taught me that from her current psychology class. I know I am blessed to be busy helping her and myself learn lots of new ideas so I really do not have time to concern myself with possible unknowns of my health. Stay positive!
Happy Thanksgiving!