on the website they quote $95,000 for femur surgery with stryde. i estimate a complication free procedure and 3 month stay in florida to cost a total of $125,000 if i am not really frugal.
for complications they quote $30,000. however this is from mere anecdotal data.
"We had two patients in the past 50 that experienced unexpected complications that required additional unplanned surgery to fix. This lead to additional costs of about $30,000 each to fix the complication. This risk is about 4%. It is therefore our recommendation to keep about $30,000 in reserve."
but according to paley institute, it seems to be safe to do this with them if you have $155,000 of money.
however, i am suspicious of the $30,000 complication reserve. what complications are we staring at?
1) nerve decompression
2) nail breaking / fracture (will nuvasive pay for the nail replacements? how many days of hospital stay are we looking at? would it not be to the tune of the original surgery?)
3) complications after initial surgery (fat embolism for ex.) and we need to be monitored in an ICU for a few extra days. how much extra might this cost?
4) any other emergency care visit from a panic attack (your leg has swollen up like crazy, would you call an ambulance and go to emergency care? or would you just wait for a week more until your appointment with dr paley?) various radiology tests they make you do?
remember that no insurance will cover you for anything here. would insurance at least cover an unrelated illness like a strep throat? i hope so.
people on the forum seem to celebrate the fact that doctors in the US do their job right from the fear of lawsuits. but fear of lawsuits make doctors act super paranoid while taking care of you leading to unnecessary tests, protocols, medications, etc. good if you are rich or have insurance. but insurance doesn't cover CLL.
here are some crazy american hospital bills i dug up on the internet https://imgur.com/a/WIfeN https://imgur.com/a/UhGdH8r
i really don't know if getting CLL in an american hospital is really for anyone who is not a millionaire.
paley institute's costs. is it way more than written?
could you please make a separate thread for it?
mods please move these replies to another thread. all i wanted to know was finances at paley institute. 
$7k for hotel
$2k for medications
$5k for international flight (including a business class return flight back because you are in pain)
$2k for food and supplements
$1k for transportation
$7k for a care taker for a month ($240 a day. one month isn't necessary for everyone, but might be for some)
that is $24k, but i left some space for miscellaneous expenses. it most probably will not be more than $20k for most. i was just being conservative.
anyway, we digress. my point of this thread was to think about how much complications might cost and whether we should just believe dr paley's 'keep $30k extra for complications' advice.
Quote from: Oh So Arrogant on May 30, 2018, 12:40:39 PMWhy in God's name would you...
1. Spend $7k for a hotel instead of just renting a short stay apartment or a cheap Airbnb for less than $1,000 per month and Uber it to physical therapy.
2. Spend $2k on medication. You don't take blood thinners with Stryde except for the first month, the rest can be handled with a bottle of Tylenol.
3. Spend $5k for an international flight, don't know where you are coming from but round trip coach from anywhere in the world wouldn't be more than $1,200 into Miami. Business class is totally unnecessary.
4. Spend $7k for a caretaker with Stryde. Waste of money.
If 96% of patients don't develop complications that require additional surgery, then 96 out of every 100 patients will spend no more than $100K. You over estimated your likely expenses by $55,000.
ok thanks for your input. please refrain from participating in the thread. i am hoping to hear from paley's patients or people who are seriously considering him.
do i have to explain to you how 4% is high odds? if you disagree then we have little value in interacting. you come off as an optimistic person who believes everything will go alright and i am not like that. i wish you good luck in saving your $100k, getting stryde with dr paley and achieving your goals.
i am intending to discuss about costs of potential complications from LL and you are stuck with my personal initial estimate. my circumstances are different from yours. fine, assume i will manage everything in $10k on top of the operation.
and 4% is not high in itself, but you have to magnify it according to the outcome. is there a 4% risk of having complications and being unable to pay for it? would that mean you end up disabled? that is high risk. that is different from a 4% risk of losing a game of tennis with your friend in which case you have nothing much to lose.
you will walk on your legs every single day of the rest of your life. anything that doesn't go well, you live with for the rest of your life. there is way too much at stake.
i am looking at homewood suites because they get a lot of LL patients. i can meet other patients and i get free shuttle service to and from physical therapy and check-ups.
Quote from: Bruce Wayne on May 31, 2018, 07:36:39 PMIsn't that like USD150/night? Who recommended you?
no. https://paleyinstitute.org/wp-content/uploads/Lodging-Sheet-May-2017.pdf
Quote from: myloginacc on May 31, 2018, 07:38:57 PMfokid, you're better off discussing this over e-mail/in consultation with Paley.
Numerous complications can occur from CLL, but the incidence and the types of complications should vary by doctor. Paley should be able to tell you what those complications are, how many times he had to deal with them, the level of incidence under his team, and estimate a cost for their treatment. You could probably plan from there if he is your main option.
This is also assuming Paley would answer honestly and reliably.
you are right. i am just trying to figure out if paley institute is for people like me. they don't reply to emails, so i will have to make a trip there i guess. i am wishing i can talk to some patient of theirs.
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