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post boston update and questions


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  • post boston update and questions

    dear and kind HCM friends......after the miracle of getting to Boston, having the BEST care i have EVER received, and a most successful Alcohol ablation, i have been up and walking around....even up hills (pretty steep ones, too here in san fran....) I am still waiting for cardio rehab to happen. I can't speak highly enough or with enough gratitude to Lisa and to all the folks at Tufts NEMC for their super-human compassion; expertise and LOVE...i think it is the LOVE and support that got me through....( i had no family or other support....and all of this love and support from lisa and the docs in Boston just made my 'new heart' weep with gratitude. I am FEELING like i have a new heart....which is very amazing, in itself...I never knew i was feeling soooo badly until i started feeling so much better. The SHOCK of having to return to the land of dialyis and kidney disease has been really hard...they don't recognize or do any looking into the heart thing, and it is NOT at all like the HCM group....so bizarre. Question #1 i am meant to have a re-evaluation etc in a couple of months....it was suggested that i return to Boston....but have financial troubles....should i just have the post follow up done here at local san fran hospital or better to go to boston?
    question #2....due to kidney disease and LIMITED income (disability etc) I had to borrow quite a bit of money to get to boston etc....I know there are grants available through the kidney foundation, when i have been in trouble, they sometimes have small grants for patients. Is their such an organization with a heart association. Normally, i wouldn't want such funds to go to me, but only to further research for MORE things like HCM, but am rather in diffficulty here, and was wondering if their is assitance . Although i am feeling so much better, and pray i can actually WORK again one day...am still in the disabiltity phase.....and at the moment am homeless and need to get back into LIFE. Should i try to contact the case worker at the hospital? Any info on assistance financial and psychological would be so helpful.....have been having anxiety attacks recently, and don't want to continue to stress my 'new heart' since they went to such lengths and HELP to fix my HCM...and i do believe it is soooo much better..
    Thank you again....just for being here....Sorry to bother the group with these kinds of things....

  • #2
    Re: post boston update and questions

    Dear Isabel,
    By all means contact the caseworker at the hospital. Have them help you in obtaining aid and support from the California Department of Social Services. They should take care of things like providing a roof over your head, and food on the table. Most of all, in your case, they should provide all the medical assistance you require. They will of course take any income you now have into consideration, and only fill in the gaps – but this could include be a large chunk of your medical expenses.

    I would expect that it would take an extraordinary situation for them to pay for you to return to Boston for a follow-up exam when the time comes, but there is no reason why the folks in Boston can’t work in conjunction with your local hospital to insure you get the proper care.

    On another note, if there are grant funds available for people in your situation, I would expect the hospital caseworker would be aware of which funds they are, and be able to assist you in applying for the grant(s). In any case, I would strongly suggest that the hospital caseworker is the place to start, - and if she/he can not help you with the state assistance, I would apply to the Department of Social Services myself.

    The hospital caseworker should also be able to assist you in obtaining any psychological support you might need at this point. With both medical and financial difficulties happening together I would think some psychological support would be of great help. Those anxiety attacks should be addressed.

    I wish I had the powers required to alter fate and have you find a suitcase full of money, but all I can do at this time is to wish you the very best of luck, and truly hope you find the help you need.


    • #3
      Re: post boston update and questions

      I am glad to hear you are doing so much better. There is a Dr. Paul Wang at Stanford, he had worked at NEMC until a year ago. He is an EP but is very interested in HCM. If you are interested in his # let me know.

      Best wishes on continued good health!

      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)


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