Experiences With Surgery For Aortic Stenosis

Discussion in 'General Discussions' started by SuiDhaaga, Mar 25, 2022.

  1. SuiDhaaga

    SuiDhaaga Platinum IL'ite

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    Nope we are yet to get second opinion.
     
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  2. Thyagarajan

    Thyagarajan Finest Post Winner

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    @SuiDhaaga the above quote impelled me to post message at #11.
     
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  3. SuiDhaaga

    SuiDhaaga Platinum IL'ite

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    You're right

    I'm literally working on paperwork my Uncle requested.

    Ironic, before this diagnosis I asked about time management and someone said that veering to something else is task avoidance

    I'm trying to respect his wishes and help his health by helping him with paperwork AND want to give him a single timeline graph of the process, what he can expect, etc, VS what is his life expectancy if he does nothing.

    Something like that.

    This is in my whole being 24/7. Even my boss is lightening up the workload because he knows about this.
     
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  4. SuiDhaaga

    SuiDhaaga Platinum IL'ite

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    I am pushing as best as I can. No delays, no denials, etc

    I need to somehow
    1- do the paperwork my Uncle is asking (1% stroke risk is too too much for him)
    2- only then I can talk about Cardiologist 2nd opinion

    I've never faced this type of hardship.

    Also, I am concerned Dr will see "illiterate Indian people" who are too scared to sue. I've seen this several times. But person went to sh1tty hospital with third rate doctors (yes in USA) and is suffering to this day.

    Of course the Dr either died (and his eulogy says what a saint he was) or was b1tch slapped by another patient who was more "illiterate" with lawsuit (I guess this is called Karma, but why should patient suffer to begin with)

    Okay....
     
    Last edited: Apr 2, 2022
  5. SuiDhaaga

    SuiDhaaga Platinum IL'ite

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    Ultimately Uncle has to leave to Specialist, but will Specialist will up-front info about how to
    - prevent a Stroke
    - is Uncle's heart suitable that Specialist can use Cerebral Protection System (such as from SENTINEL) to prevent the Stroke to begin with
    - whether he is eligible for TAVR, i.e. is heart anatomically correct, etc
    - how long will tissue valve last
    - be honest as to whether TAVR or open heart surgery will make his situation better or worse.

    Somehow we need to get Uncle to face reality, it is still a shock. It is a shock for all us.
     
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  6. 1Sandhya

    1Sandhya Platinum IL'ite

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    Wow Sui, I feel for you. You're in a tough place. I think you will have to be a little tough with him and 'negotiate' so both works happen on parallel tracks. The timing is not on your side what with the entire country opening up this spring and thousands of people heading to the docs for delayed and postponed procedures. That's partly why I'm saying make the appointments asap.
    Getting a second opinion: Activate your networks. Ask among your friends, co-workers and extended family. Especially reach out to the doctors or medical students in these networks or any patients who had cardiac treatment for doctor referrals. Do you stay in or near a major metro area? Usually there are specialty hospitals well known for cardiac specialty in most metro areas now. Spend your time in trying to find a reputable doc. I'm not sure how much watching actual operation videos and reading horror stories will help.
    Convincing the patient: Make a deal with him. Promise him that before he is wheeled in for the actual operation most of the paperwork will be dealt with. Meanwhile he should show good faith and agree to start the preliminary tests. You could try directly making a followup appt which will definitely be a few weeks away and use that to make him understand delaying the treatment is not in his favor.
    Paperwork: What kind of paperwork is this? You need an attorney only if the property or assets are in dispute. He can simply put down his wishes on a piece of paper, have two people not living the same household witness it and get it notarized. Usually that is sufficient. If he wants to assign nominees to his accounts and assets that paperwork will take time. If the property/accounts are in India, that involves a lot of running around and nowadays mostly people hire brokers in India to do the running around. That was what I was asking earlier. Make him execute two power of attorneys, a medical one which the hospital will insist on. And a general one for the brokers and you.
    You should consider taking a short leave of absence for 3-4 days to finish off all this paperwork.

    Again these are your fears or his fears talking. Try to be strong. Vent here if you want to.
     
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  7. 1Sandhya

    1Sandhya Platinum IL'ite

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    These are all great questions to write down and ask the specialist once you find him. Again what is your location. East coast, NY has lots of great hospitals. West Coast CA too. I think they'll be honest with you. No doc is going to randomly want to open up the chest of a 70+ man just for fun. They are all snowed in with work.
     
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  8. SuiDhaaga

    SuiDhaaga Platinum IL'ite

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    I am in East Coast, big city. We are near two big hospitals but are concerned about transportation (Uncle cannot walk too far, hence are avoiding public transportation. Plus it costs a fortune to own and operate a car, so we have to rely on car service)

    There are smaller hospitals that we’ve had bad experiences with, ie the are Doctors are immigrant or 1st Gen Americans who bring their mentality of “our race, culture, etc is better than yours”, you are stupid, you worship me because I am Doctor (from the East European countries any way)

    Really my Uncle was in ER few years ago and this woman kept pushing us to hurry up and sign paperwork before reading it.
     
  9. SuiDhaaga

    SuiDhaaga Platinum IL'ite

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    Also I didn’t mention, Uncle is tacking other health problems (it is by chance we went to Cardiologist because he is nearby and speaks his language) They are causing him so much pain, he don’t even want to live. Hence he also don’t want to talk about Heart

    - his knee pain is getting worse and worse regardless if exercise, diet, etc. I was able to snag appt from Big Hospital in 3 weeks

    - ears are clogged and Ear Drops made it worse. I was able to snag an appt in small hospital with Doctor who looks good on paper (had bad experiences another Dr from same Hospital who also looked good on paper) in 5 weeks

    - coughing up lot of phglem. Had difficulty even making appt with Lung Dr. (speaks his same language) Got it 3 weeks from now. Nearby office says one thing about coverage, his insurance says another. To be in safe side I got same Dr, but at a further away location and date. Otherwise Uncle could have seen him last Fri, but now heath are got delayed due to Insurance non and mis communication

    - the most troubling pain is him having problem doing number 1. I made appt with his current Urologist upcoming Monday ( had nasty experience with same hospital pre-COVID), and I am confirming, reconfirming appointment plus Urine Flow Test (because that’s where they screwed up last time. He was supposed to have Urine Flow Test, made appt, but Dr didn’t know he had appt. This incident can go in its own thread)

    - in case the current Urologist/Hospital still screw up, I made appt upcoming Friday to see another Urologist. He is from big hospital but at an offsite location. Someone posted complaint in Google about this office not answering phone calls and a diagnostic test got delayed

    - in case this Urologist cannot relieve my Uncle’s horrible pain, there is a third appt 3 weeks from now. From another big hospital at an offsite location.


    We need to give Uncle the will to live. Pain from other ailments is so horrible. We use restroom for relief, not to experience more pain

    Making appointments are not so straightforward forward because of all the red tape, non-communication from Insurance (he got the least worst insurance from Medicare and they are still so horrible. Last year there was an incident where I had to involve Attorney General)

    As for paperwork everything is in USA. He is looking for Heath Care Proxy, and POA on his accounts.

    Some accounts require Bank Certified stamp which means making appointment with Bank manager, spending whole day going to bank, and hoping that Bank manager shows up like she says she would.


    Last Friday I was so worn that I could not get out of bed, let alone go to work. That’s where I started on some paperwork. Hoping to take some leave of absence to finalize the paoerwork and give my Uncle the will to live.


    Traveling for him right now is a nightmare. He grunts and breathes loudly. At first I thought it is because he is in so much pain.

    Now I think the grunting and breathing loudly is like my late Grandmother’s who died suddenly. I am starting to think she also had aortic stenosis but it was never detected or treated.
     
    Last edited: Apr 3, 2022
  10. SuiDhaaga

    SuiDhaaga Platinum IL'ite

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    I think my last post had lot of info. Feel free to comment otherwise no worries.
     

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