13 Comments So Far

  1. I know you just changed your policy and it was a night-mare and you don’t want to change again but just a thought in case you hadn’t heard of it. Child health plus – we put our daughter on her own separate plan and kept our high-deductible family plan for my husband and I. We didn’t know about it for a couple years but it has been great for us – all children are covered regardless of income as long as neither parent has other employer insurance available. Premium is based on income but the top tier is $200 something per month, no deductibles. It is a NY govt program so I don’t know if you would run into issues w/certain things being covered or not or certain doctors but Westchester is also our hospital and our Dr’s, the hospital and ER were all covered fully.

  2. A friend shared your story with me. Your family is in my thoughts and prayers. I happen to be a local insurance broker and can only imagine how frustratig this has been for you. If there is anything that you need assistance with in terms of navigating the world of health insurance please don’t hesitate to reach out.
    Best,
    Yvonne

  3. Jackie…I am with Steph…I said my expletives aloud instead of wriig them. In the face of the decisions you have to make, I can’t believe that the paperwork is anything short of maddening!

    You are brave beyond measure.

  4. I just want to throw this out there — If you do decide to try chemo, please know that there are so many good drugs to help alleviate the side effects of chemotherapy and support a patient’s comfort and healing. And not all chemo makes you lose your hair. Good luck with the decision. It sounds like you are working with an amazing group of doctors.

  5. Wow, what an ordeal, Jackie! And such tough decisions to make. I echo the opinions of others here about insurance companies. I’m having my own battles over the emergency appendectomy I had at the end of July. Insurance bureaucrats are brutal, merciless and mercenary. Give ’em hell!!! Thinking of you and sending lots of loving support for the decisions you have ahead; thank goodness you’ll have another solid opinion to put on the scale.

  6. Jackie:
    Here are some direct numbers for Ulster Medicaid people in case you need them:
    Sue Warman, Director 334-5240
    JoAnn Mundhenk 334=5027
    (Principal Social Worker)
    Sometimes just knowing the process helps in the midst of everything you’re dealing with.

  7. Hi Jackie – how frustrating and enlightening – what an incredible decision to make. I am so glad that someone out there also feels it is important to help save Ana’s own liver – wouldn’t that be great in the long run. Well I just want to let you know that I am sure that you will make the right decision for your family and for Ana and that whatever your decision is, we will all support you. I am sorry this about this laborious process and that there are so few ways that we can help you deal with the paperwork and nonsense that goes along with these important decisions. Take care, see you soon, Mary-Ann

  8. I HATE insurance companies. We had our own bad experience with them many years ago. As far as the chemo goes, I agree with Julie. I also hope this opinion helps a bit. All our continued love and prayers!

  9. I was so moved by how you shared about explaining to your (adult) daughter how you made the choices you did. I wish someone who has been there done that could weigh in about the liver stuff. I love reading your words, I so appreciate your sharing them. You crack me up about the pictures. I’m glad you found some relief after the stupid form disappeared. Can you believe the crap you have to grapple with? I’m totally shocked. Glad you can pursue another opinion, glad there are people who are so passionate about this organ. Love you guys.

  10. I have worked with people with kidney transplant, both living and cadaver doners. Anti-rejection medication for life is a struggle in and of itself, and you can get life-saving treatment if it fails. Not so with s liver, as you know. I am not Ana’s parent, but as a parent, I would do anything to preserve my child’s own liver. Short-term will be bad, but long-term could be so much better without the lifetime anti-rejection medication. Has anyone discussed if they think this rare tumor can return elsewhere? Sorry if you did not want an opinion, but I felt compelled to share what little I know about transplants.

  11. jackie! this is awful! and it isn’t fair. who are this people that make up all these stupid rules? and we have no choice because we have to do what they say because they have money and power. makes me cry. on a positive note, you will have now the opinion as you said if another top specialist. more than one opinion is always helpful. you and jim have a very important decision to make and you’ll always find someone will favor one option over the other. do your homework thoroughly and when you and your husband finalize your course of action for ana there can be no doubt. regardless of what the future holds for your family, you do not need hindsight telling you, “if only i had known…” i will read some acticles, too. see if i find something helpful. i will continue to pray for you, ana, jim and emily. much love, jackie. jennifer

  12. I want to write some expletives here but I don’t want to offend anyone. There are just no words. This is more than anyone should have to endure. I know you and Jim will weigh all the facts once you have them and make the best decision for Ana. You all are in my thoughts every single moment. The donations are pouring in for the yard sale on Saturday – we can’t wait to make buckets of money for you. I will call you tomorrow.

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