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    • #29798
      Colleen Steele
      Keymaster


      @azad
      has shared that his son is suffering from severe PH. His right heat is not working well. Dr. in Bangladesh does not know the treatment and the medicine used for PH is not available. He has communicated with a hospital in Thailand and necessary reports were sent to them. They have suggested to take Stem Cell Therapy.

      Do any of our members have experience about stem cell therapy? @azad is feeling very anxious for his son and would appreciate any information you can share.

    • #29802
      Jen Cueva
      Keymaster

      Thanks for starting this post, @colleensteele. I have had an interest in stem cell therapy. I only know of one PHriend who underwent a clinical trial with stem cells. She did well and had no adverse reactions.

      Let me see if I can see if that CT had been reported or noted as of yet. I will come back and share it here if I find it.


      @azad
      , do you know if they have a website for that hospital in Thailand with any information about their program?

      The program that my PHriend was I was at UCLA. I don’t think that info is updated yet, but I did find this article that may be helpful for some.

      Anyone else have any updated information on stem cells and PH? PHA is also not sharing any updated info yet, just this basic information.

    • #29809
      Sandra Guajardo
      Participant

      Hello @azad, When I was diagnosed with severe PAH in May 2017 I asked about stem cell therapy. I was told only one patient had shown significant progress on the therapy, it was still considered new at that time. At the time of my diagnoses, my BNP (blood work number) was 830, severe heart failure and the right side of my heart was severely enlarged. They started me on several medications, the best one being Veletri which is administered through infusion pump. It is delivered to my house by a specialty pharmacy. I don’t know if it can be delivered internationally.
      Every three months I drive six hours for doctor appt in Houston Methodist Hospital. They have a Lung Center and are very familiar with PH. They are also involved in several research/grant projects. Maybe your doctor can reach out to them also.

    • #29821
      Margaret
      Participant

      Dr. Duncan Stewart, exeutive vice-president of research at the Ottawa Hospital and the Ottawa Heart Institute is working on stem cell research. At least one in my Ph support group has been part of a test, and thinks she had a good result. There are other hospitals in Canada working on the same project. Guess I’d better try “Googling” to see what results have been made public.

    • #29855
      Md. Abul Kalam Azad
      Participant

      The name of the hospital in thailand is saint luice hospital. You can search in google.

    • #29856
      Md. Abul Kalam Azad
      Participant

      The name of the hospital in thailand is saint luice hospital. You can search in google.
      Dear sandra
      Could you please give me the detailed of the medicine including generic name. You are also requested to give me hospital/doctor’s detailed. You can also help me to sent the medicine by DHL.

      • #29857
        Colleen Steele
        Keymaster

        @azad can you clarify what you are asking Sandra to do in regard to the medication? You mention sending you the medicine by DHL?

    • #29860
      Md. Abul Kalam Azad
      Participant

      Dear sandra
      How is yourhealth condition. Anti pro bnp of myson is 2400. Can you give methe detail of the medecine you use including doges and using methods.

    • #29873
      Md. Abul Kalam Azad
      Participant

      The person communicated with me is sandra from saint louis hospital in Bangkok. The email address is [email protected]
      I would like to get some information from sandra about the medevine veletri he is using. How it is used and what is the doses. Is it tablet form or injection.
      Let me know detail of the medicine

    • #29892
      Sandra Guajardo
      Participant

      Hello Mr. Azad, When I was diagnosed my BNP was 830 it is now 22. You can contact the Houston Methodist Lung Center Team at 713-441-7779 or houstonmethodist.org Veletri comes in single dose vials of 0.5mg powder and is mixed with sterile water and then with syringe put into a small cassette and is hooked up to medication pump. There is no generic for it. I use 4 vials of 1.5mg (total 6.0mg and a pump rate of 61). You can view how it’s mixed on you tube, search veletri mixing. Here’s a link to one of the videos https://www.youtube.com/watch?v=e968kYe9lNA
      I’m unable to send medication since it’s imperative your doctor supervise the administration of it.
      I also take Opsumit 10mg, Adcirca (generic Tadalafil) 40mg, Sprinolactone 25mg, Digoxin 0.125mg and Vitamin D supplement.

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