• Anastasia Antonova posted a new activity comment 1 month, 2 weeks ago

    Hello Brittany! the last six months I tried to get a new medicine – opsumit. I had to get it through the court. I’ve been taking this medicine just for 1 month, so I don’t feel the change..for the time being. After a bright and long summer holidays I hardly speak English. Did I understand correctly that you buy the medicine by yourself?
    • I did not do any operations. At the moment there is no possibility to get therapy abroad, but I plan on moving out in future . Yes, I did just this diagnostic test. Yes, we have good specialists , just in big cities.( Moscow, St-Petersburg). we face very big problems, often we have to get the medicine ourselves.This is happening not only with…

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      • Hi Anastasia,
        So interesting to hear about the healthcare in other countries. I’m sorry that all the specialists are in the bigger cities, is it far for you to get there ? Do you have to travel a lot for your care ? That is terrible that there is such a struggle with getting the medications that you need. Unfortunately it can be the same way in…[Read more]

      • Hello Brittany! the last six months I tried to get a new medicine – opsumit. I had to get it through the court. I’ve been taking this medicine just for 1 month, so I don’t feel the change..for the time being. After a bright and long summer holidays I hardly speak English. Did I understand correctly that you buy the medicine by yourself?
      • Nice to meet you, Brittany! At the moment I get Tracleer( 125 mg twice a day ) ( in advance, sorry for my English). In my region when I live there are big problems with provision of vital and expensive medicine. Now I got the medicine from charity. In January I was in Moscow, in the Bakulev Scientific Center of Cardiovascular Surgery, where the…

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        • Hi Anastasia. I am honestly unsure if there is anyone that I know personally that has been unoperated on with one ventricle. I am glad that you are able to get the medication but I can only imagine what you must have gone through to be able to get the medications and the care you need. I am wondering if the surgery for single ventricles was even…[Read more]

      • Anastasia Antonova changed their profile picture 7 months, 3 weeks ago

      • Anastasia Antonova became a registered member 7 months, 3 weeks ago

        • Hi Anastasia,
          I just wanted to reach out and say hi and welcome to the forums. I am 27 years old and have also been born with congenital heart disease. I know of many with single ventricle who also have PH because of their heart conditions. How has the medication that you’re currently on been working for you? Are you being followed by a…[Read more]

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