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Waldenstroms and amyloidosis

Blood Cancers & Disorders | Last Active: Apr 7 8:50am | Replies (71)

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@warrens

Julie, if you're at Mayo, there is generally a social worker assigned to you as part of your health team. Speak to them and indicate that you need an earlier appointment because your husband's disease has had an exponential increase. Hopefully the social worker can cut the red tape for you to see the doctor earlier. Also, I suggest that you keep your calendar available, either written or on cell phone or both so you can jot down new date and info.[if paper calendar, appointments in red, other general personal appointments in black] You should have access to Mayo's portal. When a new date is set, you can go there and see it and other appointments as well. If that is not possible to register at portal, then call "Scheduling" and ask them if they have the appointment change that the social worker helped with you. If they do, you can request that they mail you all upcoming appointments.
Other questions: Prognosis? What type of meds for pain? Opoids may be addictive. Anything else for pain? Also, meditation is good for de-stressing for both of you. Exercise, even walking is good. you can do that together. Take Smart water with electrolytes or Gatoraide, wear good walking shoes, Just go at the pace that is comfortable. Take cell phone. Stay in fairly level streets or parkland. He should not walk alone at any time. Consider a mental health counselor that may ease his pain and stress. The social worker assigned has outside names to help.
I wish you well. I have to go. have my own issues to content with. Take care and be well.

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Replies to "Julie, if you're at Mayo, there is generally a social worker assigned to you as part..."

Thanks for your concern

Julie, as a general rule of thumb because meeting with the doctor can be stressful and so that you can concentrate on what the doctor is suggesting, which are generally options, that another person can be with you to take notes [preferably another family member] and also ask questions. I have done that with my adult daughter present with me. My adult son,who is quite a distance from me, was on my cell phone with speaker activated so he could also ask questions if he wished. If you do this, then you can discuss it with your family with all the facts at your disposal.
Again, sending good thoughts your way.

I seem to be the one taking notes and reading anything on the internet (probably too much). It doesn't look promising but I might be awfulizing. Bleeding before cut. Trying not to do that. Taking it one day at a time. He is getting pretty weak which he attributes to the autonomic neuropathy.