Charleston Bound, part 2

scary

i tried all the suggestions for free rooms, and even called the ACS for suggestions, but none of them panned out.  i also called guest services at MUSC, and the discounted rates nearby were still out of my price range.  so i got a relatively cheap room at a place about 11 miles away.  still an improvement over driving 2 hours on the morning of the surgery.   now my nerves are shot, because there is no guarantee that medicaid will approve the breast reduction portion of the surgery, even though the so called healthy breast is a size g-h, hurts my back, shoulder and neck, and causes me extreme anxiety as well as pain in the breast itself, and a rash from the bottom of it rubbing against my upper abdomen.  so now, it's a waiting game.  i wonder if i could get a discounted rate or if i can get some sort of monthly payment plan for the reduction portion, or if i say they can use it experiment on or i tell them to let a student do the reduction portion for research purposes.  i am extremely upset about this, and won't rest until i know it will be okay.  i am having the surgery no matter what, but i don't want to wake up with a nicely reconstructed breast on one side and still look like Elsie the borden spokescow on the other side.

lbrewer

federal law requires payment for reconstruction for symmetry. It's part of the law covering breast cancer reconstruction surgery.  I  would think that the law apples to Medicaid coverage as well

MartyJ

Very true Lbrewer.  Scary, you need to step on the folks at MUSC.  They have the responsibility for negotiating this through the insurance.

Tamiami

Thank you Marty!  Do you know if the area that the Mt. Pleasant condo is in, is a safe area?

lbrewer

heres a link

http://www.cancer.org/treatment/findingandpayingfortreatment/managinginsuranceissues/womens-health-and-cancer-rights-act

scary

thanks for the info ladies.  i read somewhere that the act didn't apply to medicare and medicaid, and the musc people said they have seen cases where the other breast did not get approved for reduction.  but i'm going to hope and pray that it does.  they sent the pics they took of me, plus the documentation with the request for approval.  it is such a dramatic difference: even if my back/shoulder/neck didn't hurt, wouldn't they consider psychological damages?  I will try my best to keep on top of this.  thanks again.

 

bethcw

Tami, 

I am with Marty, I would also choose the IOP unit. My first surgery was also in January and it was quite mild the whole time I was there. Being around the beach for me is always very therapeutic along with being good exercise. I walked the beach briefly the same day I was released from the hospital!  The area is fairly convenient as well.  Good luck with finalizing your plans.

Beth

MartyJ

Tamiami - most of Mt. P is a safe place, but . . .  the condo complex is sort of between 2 main arteries, not a neighborhood.  You can walk within the complex, but might be on a sidewalk along busy road if you go outside. You will have to drive most places (restaurants, grocery, etc.).    I am really thinking of you getting to take walks as they are very healing.  This location does position you so you can take drives easily downtown to the Historic District.  Unless you are a real over achiever, you probably will be touring by car more than walking around.  It is important to give your body plenty of time to heal at a slow pace and not push things.  Rushing to be back to "normal" usually leads to other challenges.

The IoP condo is less expensive (if that matters), but does not have a recliner.  I spent the first 10 days after DIEP in a bed, propped with pillows - no recliner available.  It worked.  At day 5, I was supposed to walk a block or two (actually did 4 very long New Orleans blocks the first time to a breakfast place and back - then slept for 4 hours).  I was walking at a snails pace, but it was on a wide sidewalk that was easy to maneuver with little traffic around. It helped me to set goals - to walk to a certain restaurant for one meal out.  I live on IoP.  The condo you are looking at is 2 blocks from Harris Teeter and 2 blocks from several restaurants (Luke N Ollies Pizza, Coconut Joe's, Long Island Cafe (lunch or dinner), Acme Cafe, Seabiscuit (fab breakfast, lunch). 

Both condos are about equidistant to East Cooper Hospital.  I hope I am helping and not confusing things.  If you haven't looked yet, you can get some great winter rentals through Island Realty and Dunes Properties.  It can be helpful to have a "manager" to talk with if the owner is not available.  I am sure you will make the right choice.

Catie2013

Tami - I stayed in IOP in January of 2013.  The weather was beautiful and I enjoyed the beach and the area very much!  Very safe and seemed a great place even when the weather turned to rain (1 day)!  Not saying all Januarys are as beautiful but in a heart beat I'd go back to IOP!  The unit looks wonderful. don't remember if you are having an SGAP or PAP (which I can speak to both of them) but if either one, you won't have a problem not having a recliner, in my opinion.  

I hope that unit is available for future visits - it looks wonderful!

Can you call AFLAC to see what they consider 'hotel' - they should be able to take your receipt as proof you were there.

Hugs

Catie

Catie2013

• Oh, and I was in IOP for the entire month of January and a few days into Feb!  I loved it!

Tamiami

Thanks Beth, Catie, and Marty.  In the end, I'm leaving it up to my mom.  She has COPD and doesn't/can't walk anywhere, so she has to feel comfortable driving to get food etc. for us. It sounds like either one will work out location wise, so I'll let her pick.

Marty, just so you know, I did try Island Realty and Dunes Properties, and the units (some at the same complex) were more than twice as much as the ones listed on VRBO.  It was crazy, and when I emailed both places about a monthly/discounted price, I got a curt email back with the same quote...listed as monthly, but still the same amount as 4 individual weeks.  Very disappointing.

Catie, Dr. K will determine which type he will do after my MRI and exam.  I asked about the PAP and he said he prefers the SGAP.

lbrewer

tamiami,

I had an sgap with dr k late last year I only had one side done and wen back for tweaking this year. I came home to orlando about four following surgery the first time.   Dr k said I had to stop and walk but I made it. I think other women here have had the same experience.  I was scared about sitting so long but the incision is really a bit higher than the part you actually sit on!   

PinkHeart

Ashira,

Please let me know if you need help while you are here. If you have time would enjoy meeting you, too. 

Tamiami

lbrewer...four weeks or four days???  I don't have a Dr. here to take care of any complications that may arise after the surgery, so I plan to stay in Charleston for any after care I may need.  I hope to have the drains pulled before I leave...I had them in for 6 weeks after BMX, so I'm hoping they will be done draining before that this time!

Catie2013

Tamiami, either procedure will work without a recliner - and I'd trust Dr K's opinion no matter what!  

I was there January 2013, Beth was there 2014, and you will be there 2015 - all in the month of January!  The weather was beautiful most of my month plus trip!

I also found VRBO the best to find my "nest" for recouping for the month.

Hope either place you choose works great for you!  

Hugs

Catie

Ashira

Tamiami,

The unit that you posted is the same one that I stayed in at IOP.  Lovely, clean and comfortable.  I was not wanting for a recliner.  Proprietors are kind and very helpful too.  Feel free to PM me if you have specific questions.

Pink Heart, thank you for the offer for assistance !  I think that I'm covered this time around, though would be happy to meet you if time allows.  It looks like I'll be doing a short turn around, but will be in touch .  Maybe coffee in the afternoon if you don't work full time?

Tamiami

Catie~  Thanks for the thoughts about the recliner...I just know I lived in that thing after my first surgery!  

Ashira~  What a coincidence!  Glad to hear you were happy there!

scary

Ladies, my surgery was approved!  Thank you God, and thanks to the words of encouragement here.  Hugs to you all!

MartyJ

Scary - wonderful news!  I am sure all will go very well for you.  Just remember to give yourself plenty of time to heal.

scary

thank you.  we will stay in charleston the night before, and maybe take a quick ride to the beach.  then surgery the next morning.  i plan to rest and will be a couch potato during recovery!

PinkHeart

Scary,

That is GREAT news! I am so relieved for you. Hearing what you went through was bothering me about how BC patients being treated. I would like to apologize if i made you feel like you had to be a "flapper" to post here. I'm now finding out how small of a city Charleston really is so no wonder there not a big BC.org online community. Hope you find a good dog sitter and maybe you can even Skype?  I used to have a side business as a "Kitty Sitter" and I would text pictures to my customers (unless they were out of country)  Pets are very healing. Hospitals bring dogs in to see patients because they truly help. Blessings! 💗

PinkHeart

Tamiami,

The IOP condo sounds like a nice deal. I found a cute little 2 bedroom cottage VRBO on Sullivans Island but it is rented by the month from 1st - 30th. Please let me know if you need help or would like to meet. I live within view of Sullivans Island and 10 minutes from EC hospital. My office is 5 minutes away, which has been great going from work and taking a pretty back road to the hospital for my weekly PT appointments, doc appts, and labs this morning. 

Ashira, I do work full time but my office closes at 11:30 on Fridays. I get off work at 5:30. Would love to meet but totally understand. 

On another note, I went to EC hospital for labs this morning and they do have the Ebola thing covered. Big signs when you walk in door and security asking if you been to those countries or been near anyone who has. Then when I got to Labs Dept, same questions again. Reminds me of when I was hospitalized during H1N1 and hand sanitizers evrywhere and my kids couldn't visit me because they weren't allowed in hospital. 

scary

thank you Pink Heart.  My neighbor agreed to watch doggie.  we should only be gone the night before, since i'm the first case the next morning, so we got a room nearby.  then they will keep me for observation, and only keep me overnight again if needed.  i'll just call my neighbor and let her know.  now i am counting down the days.......

p.s.  i would have loved to have the tummy flap thing instead of an implant, but the doctor said i couldn't; something about a heart risk because of my size.  but i feel that with the boobs a reasonable size, i will be able to do my full range of exercise again, and for some reason, the femara keeps my appetite in check, so i'm not pigging out anymore.  of course, i will fully heal before i do anything strenuous, but it should be okay to go on my exercise bike while i watch tv, after a few days of sleeping off the anesthesia, lol.

Ashira

Hi Pink, I've scheduled appointments on Thursday before surgery,  with a break around lunchtime depending on whether or not docs are running on time.  We could possibly meet then if you have flexibility.  Surgery is early Friday morning.  So Thursday mid day is my only window .

PinkHeart

Ashira, that works for me. I'm five mins away so you could text or call me when ready to meet. This is your last surgery?

PinkHeart

I met a patient of Dr. Craigie yesterday at a friend's low country boil in Summerville!  She raved about him (and Dr Baron, too). 

She had met me in the past and said, boy you sure came down here a lot before moving here. I ended up spilling the beans about BC and complications and coming to Charleston for specialized surgery with top docs and she immediately said, I'm a survivor and you must have had Craigie. I told her I had Kline w Craigie assisting.  

She had a Uni-DIEP 7.5 years ago. Dr. Massey assisted her Stage one. We are going to get together again to talk more. Her hubby loved Craigie, too, and I felt totally comfortable talking with her DH, too. She lucky he gets it. I'm interested in her experience and how she doing this far out from surgery. 

She didn't seem to know about BC.org. She had been a Pharma rep in CHS for 25 years and said all my new docs I got referred to are great. 

scary

We're leaving today for Charleston, going to enjoy the beach a bit and stay at a hotel.  then surgical scrub before bed and then again in the morning.  VERY early check-in time at hospital tomorrow morning.

Catie2013

Pink - small world!!!!!  So glad you met up with her and could share experiences.  I had heard that Dr. Massey assisted Dr. Craigie and Dr Kline way back and they assisted her at times too.  Funny how you fell into meeting her and have so much in common.

How is the weather there in CHS now?  Hope it holds up nicely for our Flapper Reunion November 10-12!

Scary - hope all goes well.

PinkHeart

Scary,

You have a beautiful day ahead of you to relax and enjoy the beach!  Many good wishes for surgery with easy recovery and great outcome.

PinkHeart

Catie,

CHS has been on a long roll with blue skies and warm weather. Starting to walk diring my lunch hour as I work in a very nice area with trails and pretty neighborhoods.  Going to get cold this weekend though not near as cold as Indy.

Looking forward to seeing you again!