NOLA in September?
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Thanks for all of the info re: lipo and seeing results. It's good to have a timeframe in my mind. It seems weird, though, that if it takes that long to see the results, that you wouldn't just gain it all back in the same amount of time. I am about 3 1/2 weeks out from Stage 2, and can't wait to start running again, so I don't end up with that kind of problem. It's starting to get chilly and wet here in the NW, so my bike is racked for the winter.
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Melissa - I didn't realize you were in the NW as well. It sure has been cold lately, but I'm loving it
I'm set for stage 2 November 18th. Starting to get nervous, but super excited! 0 -
Journey~I think Dr. M has her own travel coordinator since she works out of 3 different facilities. I thought her name was Jenny???? AnneW could maybe chime in here. My understanding is that she has her own office staff that does travel arrangements and insurance pre-approval. Maybe call her office and ask.
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Springtime~ My BIG day has finally arrived.....October 26th with Dr. S and Dr. D. Stage I PBM
Thanks for all of your posts and please forgive me for not sticking around all of the time. Sometimes I get overwhelmed, but I am now here to stay.
Oddball, BRCA1+
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Again, thank you so much everyone for your support. I could not get through this without all of you. I have really struggled with this decision....whether to do the surgery, which docs to pick, etc... and you brave women have set a path for me and I know you will be there for me. If I did not have you as part of my journey, not sure I could move forward. Looking forward to talking and meeting some of you hopefully the week of my surgery. Many of you will be around it looks like. I will put my screen name on my door....come see me!!!!! :-)
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Oddball,
Just wanted to reiterate what I have told you all along this journey...YOU WILL BE FINE! Keep your eyes on the "prize" sweetheart, we will all be standing by!
Marcia
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Thanks Marcia....was hoping to hear from you. Love to you!!
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Oddball1... I am brand new to this site and topic, but found you all just in time!! Thanks to Springtime~Beverly for creating this thread!! I noticed your surgery date is Oct 26th... for stage 1, mine is Oct 27th for stage 1... so we will be in the hospital at the same time for a couple days anyway.
I too will post my screen name on my room door, so you will know who I am. Are you also going to the Hope Lodge? I will be staying with a friend of mine for a week upon discharge, but then check in to the Hope Lodge on 11/8. Any other ladies out there share our surgery dates or close??
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Springtime!! Thank you for adding my surgery date to the list!! LADIES... anyone out there have an S-GAP that wants to share your thoughts? I just got my packet, so I'm off to get my tests tomorrow, EKG, chest xray, etc... I still haven't heard back from Katie about my flight though? Is that typical? I am suppose to fly in to NOLA on 10/25 and I don't have any flight info yet on Mercy Medical Airlift. I sent her my forms back last week. Anyone else flown with them before? Was wondering if there was a weight limit on baggage like with Angel Flights?
Just want to say THANK YOU to all you wonderful ladies out there that have shared your stories, it has helped me so much... more than words can say. I had felt so alone... isolated... for so long, but NOT anymore!!
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K9, I am just 1 1/2 hours away from you in Bradenton! I flew Angel flights back in "05 but cant for the life of me remember the baggage limitation...you should be fine as you wont need much. Hope Lodge is neat and clean and what a wonderful thing it is for those who need it...PM me if you'd like to talk or I can be of any help...I am a stacked diep girl who had surgery with Dr Sullivan in 2007-08
Marcia
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Marcia~ I just realized that you are in Bradenton......I would love to meet up with you for lunch when I come visit my MIL at the end of Nov. She lives in the Sarasota area but really close to Bradenton. We actually looked at some houses last time we were down there in Bradenton
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Hi Jamieh!
Yep, Sarasota and Bradenton are butted up against one another & even share a major road,University Parkway. PM me her location and we will get together in Nov !
Marcia
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Any word on Dagroz??
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Oddball - I added your Stage 1 PBM to the list! I am so glad this "sharing" list helped you. You too Kim!
Now Kima and Odd. What hospitals will you be at? Are you both at St. Charles Surgical? Many of us "veterans" (ha!) will be there for revisions on Friday, 10/29 and will be in St. Charles for an overnight. If you are there, we will visit you! Also, a whole slew will be there in early Nov! y'all (as they say in the south, even though I am a Jersey girl) will not be alone!
DAGROZ13 - GOOD LUCK TOMORROW!!!
Upcoming:
- Oct 19 - Dagroz13 - I'll be heading to New Orleans for a bilateral mastectomy, Stacked DIEP Flap and Hip Flap. Dr. Sullivan, Dr. Massey and Dr. LaGarde will be performing the procedures at St. Charles Surgical Hospital.
- Oct 21 - Liz (friend of Marcia, Marcia, Marcia) - Stage 1 bilateral delayed, NOLA
Spring.
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I talked to Dragoz/Juanita last night. She sounded great, has the usual pre-op today and surgery tomorrow. I believe Alaina was going to take her grocery shopping today for her stay at Hope. Alaina and I will tag team over the weekend.
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Welcome K9Kim. And congratulations on your decision to go to NOLA for your surgery. Your experience will be a positive one from start to finish. I had my Stage 1 DIEP in NOLA almost four weeks ago.
For those of you with upcoming surgery here is my two cents worth. If there were anything I would do differently it would be that I would not overpack. They will provide you with basically anything you could possibly need. Now, granted I may not have had the same procedure you have planned but they are so wonderfully accommodating that I feel confident you will want for nothing.
Just bring some comfy clothes that allow plenty of wiggle room, your toiletries, a couple of good books, a laptop if that is an option and that is it.
I went way overboard trying to prepare for after surgery. I brought bandages and pads and binders and ointments. None of which I used. I did use my thermometer to make sure my temperature was within the limits in case I developed an infection. But they will provide all of your medical supplies for while you are there and then at the post op visit they will resupply you so you have plenty when you get home. They will provide you with a bathrobe and slipper socks so you can get out and walk around in the hospital without flashing the whole world.
Oh, one other thing I did bring that I was glad I had was hibiclens. It is a liquid antiseptic antimicrobial cleanser. I always use hibiclens after any surgery until it is healed. You can get it at any drug store or even Walmart. It is with the bandages. My sister is an RN and told me about it. My father-in-law passed away a couple of years ago with MRSA which is a terrible bacterial infection that is resistant to antibiotics. I will never take any chances developing an infection like that in a wound or surgery site. He suffered so much -- what a terrible way to go. Good luck and be prepared to be dazzled!
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Marcia, yes you are not far from me at all! I had spoken with Angel Flights some time ago and they had a 50 pound weight limit, but this center goes through Mercy Medical and they don't have that information listed on there site. I will give Katie a call tomorrow and see if there's any news. It's getting closer and closer. I responded back to your PM, thanks so much!
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~Springtime~ I PM'd you back... yes Oddball and I both will be at St Charles Surgical... please do stop by! I'd love visitors!
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K9Kim, I flew Mercy Medical for my surgery. It was actually booked through US Airways. I don't know if that is the airline they typically use or what. I flew out of Nashville. It may be different depending on your location. So you will probably have to wait until they actually book your flight to know about any restrictions or limits.
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~Just4Ann~ Let me first say how sorry I am to hear about the loss of your Father-In-Law. My condolences.
Thank you so much for all the great information!! I know now to pack loose, comfy clothing. My packing is more for my "extended" stay following surgery. I'll be staying with a friend the first week post op after discharge, then I check in to the Hope Lodge from 11/8 to at least 11/24. I don't have a care giver to fly home with me, so they won't let me leave NOLA... lol... they're keeping me hostage! ;-)
Also, thank you for the information on the Hibiclens! I've seen that on several blogs and in my packet I received today as well, so you clearly are right! I will definitely make sure I am scrubadub dubbing with that pre and post surgery!
AGAIN... I just can't thank you ladies enough!! YOU ARE ALL SO WONDERFUL!!
xoxoxoxoxoxoxoxo
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I flew from Oregon to NOLA in September for stage 1, via Mercy Medical flights. I know that time and this as I'm preparing for stage 2, Katie did say it takes a while to get the flight info. Sometimes depending on how busy they are you won't get the flight info until the week before you leave. I flew on united airlines. So it's pretty standard if you're on a commercial flight, nothing over 50 pounds unless you want to pay the oversized baggage fee. As far as I can remember Angel Flights aren't typically used for these things, as they only can go about 1000 miles one way. So for me that option was out. Katie is truly amazing so I'm sure it's just a matter of waiting on the info from Mercy Medical. (stressful though huh
) Also yes, pack light, the hope lodge has a great laundry room with soap and everything. So really just need a few comfy items and personal items. I too over packed and didn't wear much more than lounge pants and tanks when I was there. The lady from Mercy Medical called me today to go over my application, and I called her back 2 or 3 times and am still waiting to actually talk to her! Hopefully tomorrow
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Yes, ladies that are there the last week in October - PLEASE post your screen names on your doors and let nursing know you are okay to have visitors. There are going to be quite a few of us there (some in the hospital - some just in town) and we would love to visit you! I promise to leave my kiddies w/hubby during that time so that you can get some r&r!
PJ - GET BETTER so that you can come torture yourself for 3 hours!
Sally - are you coming???
Okay - can't remember who asked about the vascularized lymph node transfer... but here is my take. I have spoken to both Dr. Massey and Dr. Sullivan about it as well as asked Dr. D on the Ask the Dr website. I remain on the fence with this one. One thing that Dr. S had told me is that they do a lymphoscintography to map out the lymph vessels to see if you still have any drainage for the affected limb at all - if you do, then they try to have you go the traditional route of MLD and compression. There is still the very tiny (but real) possibility of developing a secondary lymphedema in the area that the donor nodes are taken from - hence possibly a lower extremity lymphedema. They remove as few nodes as possible to try and prevent this, and I believe (though I may be wrong) that they have not yet had any cases of a lower extremity lymphedema from the transplant process. BUT, it is because of this very small chance that I have not pursued this form of treatment, as I hate my arm LE, but if it was in my leg, it would do me in. AND it is important to remember that it is not necessarily a cure - though some people have gotten tremendous relief from it - and that you still may be facing self massage, MLD treatments and compression for a lifetime. SO - my take - I think you need to weigh all of your options, think, ponder, pray, research... etc. before coming to a firm decision on this one. Whatever you do will be the right thing for you - and if someone does decide to pursue this mode of treatment, please keep us informed. I did meet one lady while I was there for my stage 1 that had the VLNT the same day as my surgery. I talked to her about 2 months out and she was very, very happy with her results - although she was not cured, she had significant reduction in limb volume and decreased pain. That is one person's story - everyone must decide on this one for themselves... as for me, I will wait until it is perfected - and I am not one to shy away from controversial treatments! I tried the cold laser (controversial) and it didn't do a thing for me but shrink my wallet... lol. Now I am doing accupuncture AND letting him place needles in my arm (oh, for shame - definitely controversial)! So far, it has reduced my limb only a minor amount, but the overall feeling of my arm is so much better! Again, another treatment that is not for everyone, and should be researched prior to doing! Good luck!
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Reminder to everyone - when you're in the hospital, be sure to post your bc.org screen name by the door! It would be terrible if any of us missed each other because we didn't know they were right there in the hospital with us! Also, we can pop up there after pre-ops or post-ops and see who's there!
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So far it's just me on my date in November, from here anyway! Darn it
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Kim
I found men's size small button up shirts with leggings a size or two larger than normal worked really nice for after the hospital. The shirts worked great (still do) for hiding drains and the leggings made me feel like I was not as swollen as I was. I also bought some ole lady panties thinking they would not rub against my incisions but I did not get them large enough so I had to cut the elastic in the legs and waist.
Depending on your hair style I found that I really did not have the energy to style mine so clips and rubber bands came in handy.
Hope this helps.
Melinda
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Wow, I am pages & pages behind! I Havent been feeling to good.
Good Luck to the Ladies this week!
And welcome all the Newbies.
Im up in 2 weeks! ugh.
Will be seeing alot of you next week already!
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Xfit: I live in Ft. Myers, FL & found that SW Airlines has a flight which stops in Orlando. It is a much more pleasant trip than going through Atlanta & usually quicker too. Just FYI for future use
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Soccermom: Wow! I had no idea so many of us are from SWFL.
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K9Kim: I flew with Mercy Flight in June (contacted them directly). Since I flew Delta, the weight restrictions were Delta's normal weight restrictions.
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Thanks mauicarol. We are in ATL right now. Good to know for future trips.
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