I was diagnosed with bladder Amy three years ago in Florida, went thru the whole process of tests, urinalysis, biopsy, and on and on. The end result was I was told not to worry, it is very slow growing and go about my life. Meanwhile moved back to tundra country (Minn.) started having blood in the urine and my sister talked me into going to Mayo, three hours away, I did, they are awesome and did laser surgery to remove the amyloid from my bladder. But, to my shock after getting a routine scope the other day there is another one! I live in St. Cloud and now am wondering if I should go back to May where they are the best of the best with regards to knowing about Amy. The problem is the expense involved for trips back and forth, motel, gas, etc. The Dr. that treated me at May referred me to this doctor here because I said I could not afford to continue going to Mayo, but since it is back, I'm wondering if my decision was a wise one. Should I not worry about the expense and be more concerned with where I get treated?
So, when we have this nasty thing that invades our bodies, should we continue to go to the facility that has the best knowledge how to treat this????
Thanks for your input!
Cathy
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Where to be treated
- By cathyb
- Posted February 3, 2009 at 11:54 am · 3 replies
- In Treatment centers, health insurance and financial issues
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- By GaPeach
- Posted February 4, 2009 at 8:08 am
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You should absolutely continue to go to Mayo! I too have a localized version of Amyloidosis that I had treated by local physicians. It took me 2 biopsies spread out over 13 years before I finally received a correct diagnosis for the lump on my lip. I received 18 days of radiation that helped some but did not stop the growth of the amyloid. I finally chose to go to Boston this past July for an evaluation. While there, I found out that my local doctor had given me almost double the dose of radiation recommended by the Boston and Mayo docs....and this was done to my face! I did incure fairly substantial expenses by going to Boston but I in NO way regret it. Because you have amyloidosis, you can receive financial benefits from the Leukemia & Lymphoma Society by going to their website at www.lls.org and clicking on the financial support tab. They will reimburse you for mileage, tolls, parking fees, airline tickets, certain tests and medicines, etc. If you type your zip code in to the box at the top of their homepage it will give you the phone number for your areas chapter office. Call and ask for the patient services manager, who should be able to fully explain the services that they have available to you. Amyloidosis is not listed on their website but we ARE covered. They helped me to pay for my trip to Boston. You can also go to www.amyloidosissupport.com and click on Patient and Caregiver Resources. There are some helpful links on that page where you can find additional assistance. It is out there for you, you simply have to know where to look! I can also put you in touch with another patient that has bladder involvement...she lives in Florida and would be most happy to share with you. Take care and Please continue to go to Mayo for treatment.
Paula Schmitt
GA/FLA facilitator
Amyloidosis Support Groups
- By Muriel
- Posted February 4, 2009 at 10:16 am
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I agree with Paula.
Mayo has special financial help for people in Minnesota that need treatment. Ask the financial office and your doctor at Mayo. There is also help from the LLS. Paula can fill you in on that.
Please join www.amyloidosisonline.com to talk to others walking your walk and there are other resources on our web pages www.amyloidosissupport.com
Good Luck and God Bless.
Muriel
- By cathyb
- Posted February 5, 2009 at 8:51 pm
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Thanks, I really appreciate the input. I called Mayo this morning and will be going there next week or the week after for further tests and surgery if needed.
I know they are the best and know what they are doing!
I would love it if you know someone that has the bladder amyloid as I have a lot of questions. If you can put them in touch with me that would be great.
Thanks, again, I guess I just needed to hear it from other Amy sufferers!
Take care, I'll be in touch :)
Cathy
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