Guys I had a consultation in WPB and spoke with Angelique about many of my questions. I think they painted a very optimistic picture of everything. I want to ask other Paley patients about their opinions on my questions:
1- Do you get to meet Paley during every checkup? Or is it Robbins? Or can it be someone else sometimes?
2- how long (time) does Paley spend per checkup? What about other docs if he is not there?
3- how helpful are Paley staff with logistics of LL? I want to know about:
a. transportation: how do you get to your hotel after discharge with all your stuff?
b. non LL medical care: can you go to St Marys for any problems other than LL related? WPB is a rather empty chilled out 'vacation' place and I hardly saw any hospitals there. what would you do if you had some other health issue? I will be doing this 100% alone and I am entirely on my own.
c. would Paley staff directly help you out in non LL related health matters generally? I have also been in touch with Dr. Debiparsad's office and they have been very generous in their replies and reassuring me I will not be abandoned. Whereas Paley's office is quite terse in their communication (in person they were very warm though)
d. care takers dont seem to spend the night with you. Is it always the case? has anyone had experience hiring a caretaker 24x7 ?
e. can you trust caretakers with your belongings / cash / credit cards?
4- how much does reosteotomy cost? I think preconsolidation is really the only possible complication I might face at a center like Paley's so I want to know what is a realistic amount to keep aside.
5- Is homewood suites the most comfortable hotel to be in for this? Do they help with room deliveries? are they generally kind and compassionate towards handicapped people? I think I am going to descend to a very low point whilst doing this and warm people around me would be godsend
6- do patients in homewood suites to help each other out (like a community)? I did visit the hotel and saw one guy in crutches and one in a wheelchair. They however avoided eye contact and seemed to not be interested in a dialogue (I totally understand this though). I'm not sure what amount of social life to expect whilst there 
I really hope to read some experiences on this guys!
Thank you!
I did Bilateral Stryde femurs (8 CM) with Paley in Sep 2019.
1. Every checkup I had post op was with Dr. Robbins. Paley doesn't really get too involved in patient care post op and leaves that to the other doctors. I found that Dr. Robbins was knowledgable and sufficed for all my needs. Paley is reachable through an online patient portal if you need him.
2. Depends on how you're doing. Can range anywhere from 5 min if everything is textbook clean or 30 min if there are issues. Overall my experience was textbook so I averaged about 5 or 10 min. The doctors are very busy - CLL patients are just a fraction of their clinic.
3.a. Arranging for discharge from hospital to hotel is the patients responsibility. The nurses and staff assisted in carrying me out but I needed to hire a caretaker to handle the majority of it.
3.b. Yes, thankfully I didn't need to but I saw other CLL patients have other non CLL health issues come up and they were able to get them addressed at St. Mary's.
3.c. Paley and his staff stay focused on CLL. I'd imagine if you had a non CLL issue come up they'd refer you to another doctor. They'd weigh in on the issue from a CLL perspective (i.e. any interrelated dependencies) but they won't act like your general doctor I'd assume for liability reasons.
3.d. Caretakers can spend the night with you and typically charge on an hourly basis. I worked with the agency Nightinggale, my experience witgh them was so- so, but for the first 4 days after hospital release I had them 24/7 watching over me.
3.e. This depends on the caretaker. I had no issues with mine but I would still be cautious and store all valuables in a secure place. Speak to the agency and ask if they can provide you with experienced caretakers who have worked with CLL patients before.
4. I don't know- would depend on the situation (e.g. who was responsible for it, Paley staff negligence or patient?) I would reach out to MyEvolution as he is going through this right now.
5. Homewood staff and my stay was positive. They have a lot of experience with CLL patients and are helpful and compassionate. As a general policy they don't help with home food deliveries but you can just have the delivery person go to your room. They do help with other things like helping you get mailed items to your room, throwing garbage out, etc.
6. The CLL community at Homewood was by far the most valuable asset to my experience that I didn't originally plan for. I also did CLL solo and the mental solitude will test you. I don't think I could have finished had it not been for the CLL friends I made at the hotel. You form a unique social bond with them because you share this brutal and unique experience and they quickly become your support structure and extended family, it really helps the time go by faster. Some of the friendships I made will likely last a lifetime. I remember one patient was staying by himself at a smaller, cheaper hotel with no other CLL patients and he nearly went crazy from the isolation and loneliness, he later moved to Homewood and formed friendships with the other CLL guests which pretty much saved him from going nuts. I'd reach out to Paley's staff and see if they'd be willing to help you network with patients scheduled to do it around your time.
Best of luck man. If you are set on CLL, you are on the right path: you are going to the most experienced doctor in the world with Paley, along with a world class team with his PT staff. Homewood Suites is a great place to stay.
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Topic: Dr Dror Paley (Florida, USA) Paley Advanced Limb Lengthening Institute (Read 110273 times)