I have recently been diagnosed with MDS, and have so many questions.

Posted by mick4sb @mick4sb, Apr 6 11:00am

I have just been diagnosed with MDS, and have so many questions. I will be going to Mayo Clinic for follow up opinions and understanding options for treatment plans based on my other complications, CKD state 4. Does anyone have a list of questions that they would recommend that I ask my Hematologist/Oncologist and prepare questions for my visit to Mayo? Thank you.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

scy | @scy | Apr 6 8:01pm

Best of luck
I would for sure include how your recovery will be- the schedule and any issues there would be , to include phone call contacts for health care recovery
Worst ever for me was not treatment but recovery

mick4sb | @mick4sb | Apr 6 8:40pm

Thank you. Really appreciate the comments.

janetlen | @janetlen | Apr 7 8:31am

Plenty of info here including questions to ask your Dr.
https://www.mds-foundation.org/resources/materials/

Lori, Volunteer Mentor | @loribmt | Apr 7 11:01am

Welcome to Connect @mick4sb You’re already getting some great information from @janetlen and @scy
As mentor for the Blood Cancers & Condition support group I thought I’d toss in a few more links of information for you about MDS or Myelodyplastic syndromes.

This comment contains my go-to articles about MDS that I wrote to some other newer MDS members.
https://connect.mayoclinic.org/comment/925760/
The entire conversation is in this discussion:
Living with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
Here are a list of some questions you might ask:
What type of myelodysplastic syndrome do I have?
Will I need more tests?
What is my prognosis?
What is my risk of leukemia?
If I need treatment, what are my options and what do you recommend?
I have other health conditions. How can I best manage them together?
Are there restrictions I need to follow?

Another good discussion is this one: Your tips on how to get off to the best start with a new specialist:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
I may be a little biased but the hematology department at Mayo-Rochester is second to none. Mayo is the best! I’ve been on the receiving end of care there and owe them my life.
How long ago were you diagnosed? Which Mayo Campus will you be visiting? Are you set with lodging? Do you have your patient portal set up?

Colleen Young, Connect Director | @colleenyoung | 4 days ago

@mick4sb, how are you doing in preparation for your upcoming appointments? How is your list of questions coming? Did @loribmt get you off to a good start?

mick4sb | @mick4sb | 4 days ago

In reply to @loribmt "Welcome to Connect @mick4sb You’re already getting some great information from @janetlen and @scy As mentor..." + (show)

Thank you so much for your comments. All are very helpful.

I was diagnosed 3 weeks ago. I appreciate your questions that I can use to ask when I get to Mayo. I am in the process of having all of my med records transferred to Mayo Rochester Hematology and Nephrology depts. In addition to MDS, I have CKD along with a complex cyst on my kidney. My Nephrologist has been on holiday and getting her records transferred has been more difficult due to her not being accessible to approve. Hopefully things will move faster next week.

I have my patient portal established. Not sure when I will be going to Mayo, no appointment yet. And not sure where I will have lodging depending on length of stay required.

I live in Santa Barbara Ca, but grew up in Twin Cities and went to UofM. I have lots of friends and family in the Twin Cities, and will try to stay with them when possible. Thank you so much for your kindness.

Lori, Volunteer Mentor | @loribmt | 4 days ago

In reply to @mick4sb "Thank you so much for your comments. All are very helpful. I was diagnosed 3 weeks..." + (show)

Hi @mick4sb Happy to help out. The Mayo campus in Rochester is super easy to navigate, as is Rochester itself.

To assist with your lodging when the time comes:

Here’s a link to a map of the Rochester Campus. You’ll be able to see the hotels in relationship to the campus for easy walking.
https://mcforms.mayo.edu/mc1600-mc1699/mc1663-55.pdf
Mayo also offers free Concierge Services:
Phone: 507-538-8438
Live Chat: https://www.mayoclinic.org/patient-visitor-guide
Email: concierge@mayo.edu
Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
~~~

Lodging is a heavily discussed subject in the Visiting Mayo support group. Here are a few of the dicussions:

Closest / best hotel for one night stay
https://connect.mayoclinic.org/discussion/closest-best-hotel-for-one-night-stay/
- Rochester Hotel rooms/kitchenette/grocery suggestions
https://connect.mayoclinic.org/discussion/rochester-hotel-roomskitchenettegrocery-suggestions/
- Rochester hotel with suites, good gym, and free breakfast/wifi
https://connect.mayoclinic.org/discussion/rochester-hotel-with-suites-good-gym-and-free-breakfastwifi/
- Mayo Clinic Rochester MN: Where to Stay? Shuttles? Parking?
https://connect.mayoclinic.org/discussion/where-to-stay-1st-visit
-Which hotels at Mayo in Rochester are connected to skywalk/subway? -https://connect.mayoclinic.org/discussion/hotels/

Let me know if I can help with anything else. Safe travels.
If you grew up in the Twin Cities, then you know spring and summer are better times to visit Rochester anyway, right? 😅

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