NOLA in September?
Comments
-
Brenda, call the center for how many days you have to stay after phase 2. I know that it is generally not required to have a post surgical appt after stage 2, and if you want one, you have to ask. I saw nurses for mine, as docs were out of the office. I just like to check in before I fly out.
0 -
Greetings
Insurance issues are complex. You think you understand it and then you learn that they answered the question you asked, but they tell you you didn't ask the right question. It has taken me many, many frustrating conversations to finally understand how my insurance works, and each of our policies is different.
In general, there is the issue of what does the doc accept, what does your insurance pay in network, what does your insurrance pay out of network, and does your insurance have an out of network out of pocket maximum. I initially contacted Levine's group in NY. They told me point blank that they don't accept insurance, (they want to receive actual charges), and that Independence Blue Cross, my carrier, is one of the worst in the country for approving exceptions. I knew that I couldn't afford charges, so for me, that was not an option. Since I couldn't get bilateral SGAP surgery in Phila, the next closest SGAP option for me was Hopkins, where the team accepts insurance. However, Hopkins is out of network for me. This meant that Hopkins would get 80% of the allowed amount, and I would be responsible for paying the 20% balance. However, my plan has a $3000 out of network out of pocket maximum, so my maximum obligation is $3000, for this plan year, which for me runs July 1-June 30. I met my $3000 out of pocket max with stage 1, so as long as I get stage 2 before June 30, I have no further costs. If I get it stage 2 done afer June 30, I am in a new plan year and my out of network out of pocket max starts all over again.
If anyone has similar coverage and has any questions, feel free tp PM me. I'll be happy to share what I learned.
0 -
Brenda....when I made my appointment for my stage 2, she told me that I needed to stay in town for 2 days after being released from the hospital. I was not set up for a follow-up appt. I think they want you to stay in case you have problems.0
-
Wow I was told surgery on Thurs and they didn't want me to leave until Monday. I wish I could have headed home on Saturday.
the bad part about surgery is that I miss my babies 0 -
My dear Spring, our fearless leader....and the many of you I consider my sisters,
I am so sorry I haven't checked in. "Life" turned a little chaotic and I haven't been able to read and catch up. I did try to skim some emailed posts on my phone.
THANK YOU for thinking of me, asking about me, REMEMBERING me. I haven't met a finer group of ladies who share sincere compassion.
As always, I think of and pray for you all...at each stage of this journey. For the "benign" results, I rejoice with you. For the complications, I feel sorrow. This cancer road has so many twists and turns, doesn't it?
SO...I had my REPEAT Stage 2 surgery last Thursday. Repeat, because I had a right side nipple fail and my left breast was still considerably larger tha the other. (Remember, I am the one who seems to be the medical oddity..and the same applies for my reconstruction story. I laugh...and I move on, LOL)
My Stage One had a left side fail, so I ended up with one breast HIP and one side STACKED DIEP. Going into my first Stage Two, I knew I needed to be evened up, and of course revise all of my donor sites. I decided to say yes to nipple reconstruction, although it wasn't really a strong yes. Nipples just didnt matter (hey I had no breasts for almost a decade! LOL), but I thought I would give it a go. The right side became necrotic and I eventually lost the nipple. The docs put me on a strong antibiotic and constant use of iodine (magical stuff). I healed well, and by the time my surgery date arrived last week, I only had a small scab....compared to a hole to begin with. I decided then to just have the left nipple removed this time. No need to try again, and I will get 3D tats later. I have become spoiled not having to worry about any show thru with clothing. I quite like my breasts with no nipples.
This surgery went well. Other than small incision marks, you would never know I had even tried nipple reconstruction. Dr. S reduced the left side considerably and as soon as I looked at myself I knew it was right. I am almost perfectly balanced now. Tall order for a complicated case that has two different type donor tissues. He did go into my lower back again, to remove a small fat pad that remained from the "camel hump" we get if we have HIP or GAP surgery. I wasn't expecting that, so surprise surprise I am back in the dominatrix corset of death. Nine days down, five to go!
I did also have a sinlge drain. Coming from (here it comes ladies) the top of my butt crack! It's out now. REALLY glad about that.
This time I came home weighing 13 pounds more than when I left. Weight gain as a result of swelling is expected, but this time I had swelling in my ankles face, etc. That's very atypical for me. I never had swelling...during pregnancies, chemo, etc. SO...they put me on Lasix and Potassium and ten pounds is now gone. I can see my ankles! Today will probably be my last day taking the lasix and potassium.
I'm healing well..and when I come out of this corset on Thursday, you'll know it. The echoes of my "Hallelulah"s will be heard around the country. I HATE THE CORSET. HATE. IT.
Unless something unexpected happens, I feel that I have had my last surgery. The plan was two, I had four. BUT I AM DONE! WOOHOO!!
I eagerly look forward to the tattooing, and achieve my NOLA GRADUATE status.
Even with complications, I have 100% confidence in Dr S and the NOLA staff. Getting us "right" is their top priority, and they won't settle for less. I will always have a special place in my heart for this team. AMAZING men and women, that's for sure.
My surgery timing was PERFECT. We arrived the day of the Super Bowl Parade. I stayed at the New Orleans Marriott on Canal Street. When we checked in, I asked for a Canal St view. We got to see the entire parade from my window, inside, cozy and warm. It was AWESOME. The one period of time that it was icy was my surgery day, and that night parades were postponed or cancelled, so I missed nothing. The weeked was WILD with parade after parade. We walked Bourbon and yep, I asked for beads from the guys on the balconies. It was daylight and in the 40's, so no flashing required, LOL.My DH went down on the street for some parts of each parade and we came home with real deal Mardi Gras beads thrown from floats. At night we walked the streets and it was SOOOO crowded. Memories for a lifetime!!! We came home Sunday evening, so we weren't there for Fat Tuesday, but by then I would have been "paraded out" any way!
Ladies that are just starting this journey...you will have no regrets. I have NONE. Even with two extra surgeries. I would do it all over again.
I will try to check in again soon.
With love,
Carolynn
0 -
And I finally put a photo up. This is me, in the hotel facing Canal Street, the day before my surgery.
0 -
Carolynn
Thanks so much for your post. I will be thinking of you and smiling for you on Thursday.
Regards
Margit
0 -
Awesome update Carolynn! I am so happy that you are happy...depsite the dominatrix outfit. Your attitude is aweosme. Reading your post made me smile for so many different reasons. Thank you for sharing your journey with us. xoxoxo
FYI~for those of you making plans for stage 2. They normally do NOT schedule a post op. You have to ask for one. I had my surgery on a Friday and could have gone home Monday, but wanted a post op, so went home Tuesday. If you want one, be sure to call to schedule one. I felt better seeing Dr. S before I left.
0 -
Carolynn,
Well, I am glad you checked in. I had my daily hoot at the drain exiting the top of your BUTT CRACK!!! This is a new one! you get the prize for the most unique drain exit point, my girl! And here I thought Trisha and I would win for a drain exiting in the crack between your leg and pubic bone, but NO! Sorry about the dom. of death. Oh well! This too shall pass!!!
I agree, your attitude is amazing, despite the unexpected challenges. I hope you do get the 3D tats (I need half a tattoo!), maybe we will be in NOLA tatooing at the same time!
Thanks for the update. I am glad you knew we were thinking of you!
0 -
Carolynn, great update and glad that you are through it all and happy. I am leaving tomorrow morning for NOLA!! I am having Stage 1 DIEP with Dr. D on Tuesday. Yahoo!!!!
Thanks to all you girls for your great inspiration and info--what would I have done without all of you? I'm looking forward to meeting Holtbolt, and I hope I get to meet TrainerTam too.
Will be in touch as soon as possible after surgery!
Suzanne
0 -
Yay Carolynn! You're an inspiration!
And Holtbolt, Hello and Tammy.......It's really here! Safe travels, check in when you can and Know we are behind you and thinking of you w/ only GOOD thoughts and prayers!
I had lunch today w/ my friend from bible study who was just d(x)d w/ BC at the beginning of Feb. Minnesota....I think she is your twin. I was glad I knew your weight and bra size! My friend is 51, thin, athletic and very small breasted. Everyone here she's seen has already said 'no way you don't have enough' to autogenous tissue recon. A lumpectomy would take more than half her small breast yet she can't fathom under the muscle implant as active/athletic as she is and hates the thought of foreign objects, capsular contracture and other issues. Her first BS consult scheduled her surgery for this week and she really isn't even sure what she wants.......I was able to convince her to ditch him(the first BS...her husband called him a salesman too tho). His nurse also had called and put her on speakerphone. Can you believe? She'll see a different BS soon-probably mine. Of course I showed her the breasts and again got the "I can't tell you had a mastectomy". She asked if I'd do it all over again and my answer just like many of yours.................YES! But I'd have skipped rads.... but hindsight! She has in-situ, very small, low grade papilloma? some sort of subset of DCIS, so I am still so disgusted w/ her first BS rushing her...sheesh! There was SUCH a 'take your time, don't feel pressure, you have to be comfortable w/ your decision' attitude.' from my MDs- and I had an invasive! We talked breasts, recon, Tamoxifen and hormone therapy for 3.5 hours over eggplant Parm, tiramisu and coffee.............It was great! Gosh that sounds weird BUT.....yikes! it is what it is! right? She also now has a copy of Kathy Steligo and multiple websites for reference. I know she'll do great regardless of her choice. But she was impressed as I talked about many of you lovelies! As well as the supportive network we do have here. Gosh just can't imagine how I'd have gotten thru w/o you all! So THANKS again!
0 -
Once again ladies who are on board next week, I am thinking about you. You will be so happy.
I am almost three weeks out. Did anyone have pain between the shoulder blades at this point. This is the only pain I have had. I am very sore, but no pain really except in the upper back. I wonder if it could be from laying on the table for so long. I also have bone spurs/ I ask them to change the postion of my head during surgery. This pain has just started in the last two or three days. I feel like I just cannot relax in that area.
Please let me hear from you if you had this type pain.
Bettye
0 -
Carolynn So Glad to hear from you & that you are doing good! The Dom Outfit will be gone before you know it.
The crackdrain is funny...It probably wasnt as comical for you!
Feb 23 - HoltBolt - Stage 1: Bilateral SGAP (Dr. D) in NOLA. St. Charles Surgical.
Feb 23- HelloFromCt -Stage 1 DIEP (Dr. D) in NOLA. St. Charles Surgical
Feb 25 - Tammy (TrainerTam) - Stage 1 Bi-lateral SGAP, Dr. D., NOLA. Homewood Suites. Baptist Hospital.
Wishing you all 3 The Best of Surgeries & Recovery!!
Check in when you can.
2tzus-There is a Little Conveinence store across from Homewood- called Moms. My dh picked up Crackers & stuff there. We brought cheese up from the Dinner Buffet for the crackers.
And if you want a hard boiled egg- they had them on the counter in a bowl! I had never seen that before. : )
Pam
0 -
2tzus, there is a large CVS store a couple of blocks from Homewood (on Canal St.). Also, your hotel has a tiny store by the front desk, with bottled water, juices, sodas,protein bars, frozen meals to heat up in your in-room microwave, fruit, snacks, candy and ice cream.
0 -
Bettye, I have not had pain in that area, but back when I was having massages after stage I, my therapist told me that women who've had breast cancer surgery and reconstruction often hunch their shoulders in a protective manner, which causes a lot of back issues and tightness. Has your posture changed at all?
0 -
2T - We stayed at the Homewood prior to, and after surgery. On our way "home" from Fairway, we asked the driver is there was a store on the way to the hotel - he was so kind and stopped at a local supermarket, and Shelly went in a picked up water, fruit, snacks, etc...........I did check the tiny store downstairs, and it was pretty pricey -
Carolynn - YAY!! You are done!! Congratulations!!
Bettye - Not sure what your pain is - I do hope it gets better!
Ladies - yesterday I woke up with horrid hip pain - or would it be pelvic bone pain? Anyway - it was located on each side - the hip bones in the front...... I could not figure out what in the world it was and noticed some bruising in each area. I called the Center - sent them pictures, and we could not figure out what was causing it. The only thing I could figure out was that I had traded in the 'dom' outfit 2 days prior for Spanx. Last night I went back to wearing the dreaded black girdle - today the pain was gone (although the bruising is still present.) Has anyone else had this happen? So strange!!!
LouAnn
0 -
LA, no that is odd, I had nothing like that!!! Good grief!
Bettye, I had back pain, I think from "protecting" my chest. It just took a while to get back to normal movement, etc. Hope you will be okay.
2T, there is so much food at the Homewood! They provide take out containers for their full breakfasts, and lite supper's (Monday - Thursday). We always were able to stock our fridge and get through the other days. Pam is right too, there is a convenience store across the street, we were out and got caught in the rain there, and DH had an ice cream! There is even fresh fruit, though there is TONS of fruit at the Homewood!
Hello and HoltBolt ARE on the same day! Wow! Both at St. Charles surgical too! That will be really nice for you ladies. The nurses will help you find each other. They are SO NICE!!! Tammy not far behind. We'll be thinking of all you ladies. Please stop by here when you an and say hello so we know you are okay!!!
0 -
Betty~ I am having back discomfort and it is from the hunched shoulders. I walked around after my mastectomy for about a month with my arms out to the side not moving them. It took about 3 months to undo the pain.
Okay if your drain strainer falls apart is it okay just to leave it floating around inside the bulb ??
Louann~ That sounds painful. I hope you feel better soon and your hip pain stays away. Do you still have drains ??
0 -
Bettye,
My physical therapist is a big advocate of foam roll and foam roll exercises for women who have breast surgeries, mastect/recon or lumpectomy. I dind't realize I was subconsciously pulling my shoulders forward a bit too. This foam roll thingie, it's a long foam cylinder you lay on supine lengthwise and it forces you to extend your shoulders back and there is a series of exercises to do w/ your arms once or twice a day that REALLY help w/ flexibility and strengthening. If you can get a physical therapy prescription and get in to a PT they can help. I walked in to stage 2 w/ a prewritten Rx for PT and Le therapy. But, my PT also is my LE therapist. They signed it and handed it back to me no questions no problem! I bet if you wanted PT the center wouldn't have a problem faxing a prescription for it. Hope it gets better.
0 -
Jamieh...I don't think my drains had strainers?
0 -
Priceline - we were about 2 weeks ahead of the surgery date, scrambling for a place to stay, everything was last minute for us. Surgery date was Jan 19 - not exactly peak season, so I think that's why our low offer was accepted at the Westin. We tried to Priceline it again for my Stage 2, which is Apr 21, and no such luck. Apparently, there is a 2 week jazz festival there, and these downtown hotels do not need to reduce their prices at that time. In Jan, we knew we wanted to stay in/near the French Quarter, if possible, and my date was solid, so in that case, it all worked for us. I would think in an off-peak time it would work well again.
0 -
PlainJane - you were clever to get a RX signed by the Stage 2 doc. Excellent idea!
0 -
Jaimieh - just a couple of days after getting home I found a white thing floating in my drain bulb, called the dr (was after hours and they got him on the phone right away) and he said it was nothing to worry about - it was part of the drain that is right at the top of the drain bulb. After comparing both drains I realized what is was, he did say to call the center monday and they would send me a new bulb which they did and I just replaced it.
BettyeE - I have had problems with pain in my shoulders and back - they gave me a prescription for muscle relaxers and that took care of it. You might check with them about it.
0 -
HoltBolt, HelloFromCt and Tammy (TrainerTam) you are in my prayers this week--and I'm up the following week...My preop might be around the time of your post-op so maybe our paths will cross! Be sure to post when you feel up to it and I'll be keeping track of your progress.
Carolynn--thanks for your inspirational post...I had an initial flap failure too and now am getting the other flap replaced because of necrosis (I think my body didn't like butt fat!) But I agree with you--I really believe when it is all over I'll be glad too. Congrats on graduating from dominatrix soon--I'm having a hard time picturing it and will have to re-read some of the advice folks have given. One think I'm pretty sure of is NO PANTIES!
0 -
Carolynn!!! So GLAD that you posted and I am so happy that you are doing well!!! Hurray!
Sarah - Still sending good vibes your way for the 2nd...
Jaimie - what you are seeing in there is a one-way valve. Mine fell out too - I was able to obtain another "grenade" (friends/family in health care), but when I spoke w/Dr. T about it (he was on call that weekend) - he said it happens quite often. If you call them on Monday - I am certain they will ship you another one. Then you just remove the old one from the tubing and put the new one on. I cleaned my w/alcohol, just to try and keep things as clean as possible, and avoid touching the openings with your hands (you can totally hold higher up on the tubing and away from the opening on the grenade and still attach the two).
Holtbolt, HellofromCt and TrainerTam - thoughts and prayers and good vibes headed your way! You are in the best of hands!
Pam - hoping that your bronchitis is getting better. Good heavens! It is so nice to stop coughing!!! I hope that you are headed in that direction. Did you ever settle on a date for stage 2?
0 -
LouAnn, pricey----that would explain why my daughter never brought back any change! Oh well, I wouldn't have wanted her to go to the store alone, so I guess it was worth whatever they charged at Homewood...but Spring is right, you can collect enough food to store in your room and enjoy later. The front desk staff will also give you free juice (apple, orange, etc.) upon request when the kitchen is closed, but they apparently don't advertise that. Spring, do they still do the gift basket of bottles of water and cereal bars upon arrival?
0 -
For my Stage 2 in NOLA, I was supposed to stay just the 23 hrs..ie one nite but it ended up being two nights since I had to have my dog ears cut off vs just lipo. So,prepare that this could happen. I, too, did not have a follow up appt. You have to schedule it if you want it but as the girls said, its not the norm....Good Luck!!
I have to wait to schedule Stage 3 because I am still anemic....I don't think I ever got back to normal ranges since chemo and then the ovarian cyst bled out making me even lower....fun! lol
0 -
Aw, thanks friends!
Seriously, does the dominatrix material even flame? I now have 6 of those darn things and I really thing I will take one outside and set it on fire! hehe
HoltBolt, HelloFromCt and Tammy (TrainerTam) - The time has come. The waiting is the hardest part. My prayers for an ideal outcome. And know we are all here at home thinking of you. And we "get it", we understand.
Betttye, although I didn't have that pain after reconstruction, I did have it several months following my first mastectomy. And as some of the other ladies mentioned, it was a result of letting my shoulder fall forward. I went into physical therapy, and she said it was a self protective, pain reaction that I and a lot of ladies had after surgeries such as these.A few weeks of pt and being very aware of my posture fixed it all.
Carolynn xo
0 -
Holtbot, TrainerTam and HellofrmCT - best of luck this week with your surgeries. I'm praying for excellent outcomes for you.
Sara, the same to you for next week!
Leah
0 -
OFF TOPIC:
Suddenly the replies/posts to this thread aren't coming to my email. I've checked everywhere, and this is listed as a favorite topic....but where is the option to make sure posts are emailed to me?
0
