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Lisa
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Yes, Sandi, I understand where you are coming from and fully comprehend your situation. I've been through the grinder with doctors myself and had some pretty serious accusations coming from even those who would be considered Dynamic Duos! I've had to endure a great deal, but I'm not the kind of person to give up and so I keep pushing to find doctors who can and are WILLING to help me!! My case is ONE OF THOSE, unfortunately and even with the help of doctors like Dr. Castells and Dr. Escribano, my case defies even them. I'm not bragging or anything so stupid as that, but this is what the truth of my situation is and Dr. Castells herself told me that my case is indeed a complex one and we came to the conlusion long ago that I'd basically run out of options here in Brazil. Yet, I too am in the same spot as you in that I've not got the money to travel outside of Brazil and much less to try to see any of these experts on top of it! I must work with the doctors within my means and that means staying within Brazil and within what my pocket can afford. Thankfully we have a government health insurance so this gives me a bit more freedom and options since many of these researchers work for the federal or state funded universities and hospitals and this opens up options to high leveled doctors that I would never have the opportunity to have otherwise. However, there are those who don't. The only hematologist, I believe, who knows masto and worked with Dr. Akin is in a price range that is TOTALLY unaffordable and he is not an option at all! I really need his help too, but we just can't afford him right now. I really need to see Dr. Castells personally, but just to get to the States is about $2,000 Dollars and then to pay privately for her consultation, we've added another chunk on top of that much less the travel expenses too!!
However, here is the option that you DO have. You need to keep pushing for doctors within your region to find one who is INTERESTED in your case. The great majority of my doctors are low level doctors, but he difference in them from the rest is that THEY ARE INTERESTED and they bend over backwards working WITH me, learning WITH me and allowing me to help them learn and it's these doctors who, if you can find one, who will become your greatest allies. These doctors will speak with the heavy weights and those heavy weights, who understand the challenge that we patients face in finding answers are MORE THAN WILLING to work with your doctors!!
Sandi, if you can find a cardiologist who is INTERESTED and WILLING TO WORK WITH YOU, you tell him that you've got heavy weights who will be more than glad to support him. You find me that doctor and I will give you the contacts with the higher ups! These cardiologists at Harvard who are supporting me are MORE THAN WILLING to support your doctors and they will GLADLY extend themselves to YOUR DOCTORS!! I've already asked them and they have said that they are more than happy to speak and work with any masto patients doctors!!!
So, Sandi, although your situation may be difficult, DO NOT GIVE UP. You keep facing those doctors until you finally can find the RIGHT ONE and you let him know that you've got high authorities who are more than willing to work with him and then we'll see what happens!
Have Faith, Sandi. Keep pushing. The answers are out there, but just as it takes a lot of frogs to find that one prince....!! That ONE MARVELOUS DOCTOR will make up for 100 doctors who are useless, trust me!!!
Lisa
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