NOLA in September?
Comments
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Momma2for- i am also sorry about the bleeding! I hope everything goes well in the OR!
Bev - will let u know when I find some cute green undies!
Cherrie - the girls are right... A lot of things you will go home from the hospital with, and others you will find you need along the way. The only thing I bought was pajamas. I wanted something cute that I could wear around the Hope Lodge in case I didn't feel like getting dressed to go down to eat. As for undies.... Well, there are a few of us on here that just preferred to go commando (no panties) under the dominatrix (compression garment). But not everyone gets the compression garment these days (which was mainly for hip and sgap flaps - and also for stage 2) and I wouldn't have gone without panties if I was wearing just a binder... So, again, that may just be trial and error and what you feel most comfortable with!0 -
Thanks Betsy andJeskachi for the heads up. I am making a list but will hold off. I love tips. You guys know.
Michelle and Kathy- thinking great thoughts for both of you today.
. Keep us posted. 0 -
Momma2for - I hope that there was a simple fix for the bleeding. You've been through so much. I will pray that the rest of your recovery is uneventful.
Caitlin - I'll be looking for green panties too. What a wonderful way to allow others to support you. I hope that you find that everything is easier once chemo starts. I know I felt a huge sense of relief once I started. My best recommendation is to start really pushing fluids on 4/27 and hydrate for two days after the AC too. I pushed myself to exercise most days during AC and I think that it helped me fight the fatigue.
Chelle & Cascader - My husband went to Walmart in NOLA and bought 8 pillows for $1.99 each. I brought the pillow cases home and didn't have to worry about shipping the pillows. I was able to create my nest with very little cost!
Downey & Adey - Hope your heling well!
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Oh, Michelle, you've been through so much!!! I'm sure Marga is as frustrated as you are.
Kathy, best of luck tomorrow! HAve hubby run to WalMart or RadioShack to get you a phone charger, if he hasn't already! You'll need it.
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toomuch, thanks for the well wishes. I talked to Dr. M last night and I will have a decision to make in the future. The flaps were the same size but I have a bony defect on my right side so it presents smaller. If I want to match that side I will need a baby flap. The other choice would be to make the left smaller to match. Any thoughts out there?
Healing hugs to Michelle and hoping your trip back to the ER is short.
Kathy, sending lots of positive thought your way.
About the shopping list. I didn't buy much. I got a pair of yoga pants in one size bigger. I wore loose blouses and bought colorful Hanes panties at the dollar store. I bought the ones that are like hiphuggers The more colorfful the panties the better The silky PJs do help slide out of the bed. I'm about ready to get some spanx. A friend loaned me a wedge pillow and that really helped in the hotel. I think one of the best ideas came from Adey and that is the washclothes. When I got home I bleached two packages of thin white washcolothes and half I cut a 2 inch line for the drain to come through and then put another on each side to protect from the tubing. It saves on millions of pads.
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Still very out of it from surgery. They say that I will be getting up tomorrow. I am so scared. Diepsters how did you manage!
Kathy please stop by if you can!
Michelle0 -
Hi Michelle... it will be a rough first week... if you are not ready tomorrow, tell them you need another night... I was lucky in that because my DIEP was sort of a last minute thing, (I had no companion helper) so I had to stay in the hospital 7 nights so I could take it slow.... I liked the safety of the SCSH cocoon...I did get up day 2, but was very hunched... but it improved quickly and by the time I left the hospital, I was off pain meds.
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Michelle--I'm so sorry you've had such a rough time. I'm glad they gave you some notice on getting up though
I lost all sense of time in the hospital and they just sort of sprung it on me. Don't be afraid to ask for more pain meds if you need them. I had too much pain to stand up when they wanted me to (which is what happens when you leave the pain med dosage totally up to the patient when they're in a post-op fog... but I digress...) but Dr. M intervened with a new pain med regimen and I got up with no problem the next day. Just think how much better you'll feel once you're up and around. If you had a "baby flap" hopefully you'll be less tight than if they took a bigger flap. The tightness will be weird at first but just keep moving, it'll get better.
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Hello,
I am new to this forum. I am leaving from NJ to fly down to NOLA for stage 1 surgery this Sunday. I will be staying at the Hope Lodge. My surgery is planned for bilateral mx with hip and gap reconstruction. I am a single mom and work long hours. I don't have much free time...I have so much to do before I leave. Was wondering if anyone had any packing suggestions, special comfort items, helpful tips or tidbits of information to share even related expectations from first waking up from surgery to leaving to fly home...I would greatly appreciate any helpful tips or information. Thank you.
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Hello,
I am new to this forum. I am leaving from NJ to fly down to NOLA for stage 1 surgery this Sunday. I will be staying at the Hope Lodge. My surgery is planned for bilateral mx with hip and gap reconstruction. I am a single mom and work long hours. I don't have much free time...I have so much to do before I leave. Was wondering if anyone had any packing suggestions, special comfort items, helpful tips or tidbits of information to share even related expectations from first waking up from surgery to leaving to fly home...I would greatly appreciate any helpful tips or information. Thank you.
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Welcome cfrustiie. There are people on this thread that are in NOLA RIGHT NOW. Go backwards and take time to read. There are many tips on what to expect and pack. Keep posting and those that have been through this will help you. I am not having my stage1 until August. There are amazing women on this thread.
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CFrustie, I will add your surgery to the list above.
Here is a packing thing I have in the listing above. Maybe this will help?
Packing for NOLA: A compulsive organizer prep for free flap surgery: http://community.breastcancer.org/forum/44/topic/768583?page=1#idx_6 see the listing at the top!!!
Michelle, you are in the best place! I hope everything will be fine! Hang in there!
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Michelle...Hope things start going smooth soon ! Everyday is easier - Thinking of you - you are in great hands...
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Momma2four - glad you are out of surgery and able to type ! Good thoughts coming your way.
Packing - I brought my cozy clothes, wore my own undies or went commando, was most comfie in leggings and a dress or knit pants and pull over shirt. Never did the button down, used the drain puches from the hospital, used the pillows from the hotel and just laid low.
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I am new to the site. BRCA 2 positive, age 32.
I have been doing my research in my hometown area (Wisconsin) and found out about the NOLA center. For the first time since my genetic testing, I have felt a bit of relief after learning about the NOLA center. Right now I am working through the insurance. Hoping and praying I am able to move forward with them. Know this is where I need and want to be.
I am open to any feedback or insight.
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I recommend commando. The one time I put on panties disaster ensued.
Can I get on the calendar for Stage 2 wtih Dr. D on May 11?
Also, I'll be in NOLA alone prior to surgery, so I'm trying to think of things to do on my own on the 9th and 10th.
Welcome to the new girls! You've come to a good place.
Eva
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Eva - I am in surgery on the 9th - you can visit me. My hubbie is coming with me this time so we will make him buy you a coffee!
Kerry et al. - welcome - you found the magic key,
Another tip - the elastic they give with the blue drain pouches....I used them to hold the drains when I showered. Slipped them the drain holders and tied it around my waist. I dislike things hanging from my neck so hated hanging the drains from there.
SLIP ON SHOES
bending is not so easy.Last tip - I did laser on my underarms prior to surgery so I did not have to worry about shaving, lasts about 6-8 weeks and gets lighter every time you do it.
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Michelle, you looked great ! So good to see you and your mom! Keep up the positive attitude! Hope to meet you and Adey in Chicago and show off dr. M work! I just love her! Well got to be at hospital at 5:45 am. Thanks o much for your thoughts Nd prayers! Everyone here is just great!
Kathy0 -
Best of healing wishes Michelle and Kathy. Welcome to the many new ones I see popping up on here. KerryA from WIsconsin, I am Keri B from Iowa and BRCA 2 positive (age 38) and went to NOLA. Never looked back. Makes the agonizing BRCA decisions much more bearable. These ladies here are one of the many reasons why the NOLA community is so great.
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Also sending healing wishes to Michelle and Kathy.
Hi Kbodie!
A question - I was asked to send in photos to assess how much of the lipoed fat transfer took on my (non NOLA) previous DIEP reconstruction. How long does it usually take for them to get back to you? I have never sent photos before.
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Besa, sometimes it can take a few days depending on how swamped they are with patient appointments at the office. If you don't hear back in a few days, give a follow up email or phone call!
Michelle and Kathy, hope you are both doing well today.0 -
Just got in a chair for the first time. Boy that was hard. My stomach looks and feels very....hopefully it will go away!
I saw Kathy last night, what a great lady. Hugs and healing too you Kathy!
Oh, doc put a binder on me after the second surgery and I know have hives like I did in December. Must be the same company as the DOM.
What next.0 -
I just got back from physical therapy and the PT said my scars were the nicest she'd ever seen - and she'd seen a LOT of scars. She was in awe of Dr. D's skill.
Karen, I have my pre-op appointment on 5/10. Will you still be in the hospital that day? I will definitely come up and see you.
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question for you diep girls. After your surgery was your stomach hard, bloated and painful? I am worried. Nurses don't seem to be worried
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Michelle, I had a rash, too, and was put on benadryl followed by a steroid pack when I got home (rash appeared a few hours before I was to fly home! but Dr. D. and Laura saw me right away). Everything turned out fine.
The first two weeks post op... were so hard for me. They told me I have a high pain threshold (I needed only Ibuprofen before the first week was up) but I have a low worry threshold which was a new experience for me. I am usually a strong headed type and PBM was a difficult choice. But, I had a big surgery - stacked DIEP + hip flaps to fill my breast envelopes - and I am a petite person, so seeing that much of my body well, changed, was so hard. I was not prepared for it or the limitations at first; I had prepared myself for emotions related to "losing/changing" my breasts. Well, my breasts look fantastic and as I am healing I know the rest will come.
I stayed an extra few days in the hospital mainly due to continuous nausea and not sleeping. I was up and walking a lot, though (there is that strong-mindedness). Everbody is different in how they heal and cope. I felt like a wimp because everything was hard for me the first two weeks but I am now 3 1/2 weeks out and can see improvement every day. It was hard for me to believe I would ever feel better in those first few days. I rested in the knowledge that NOLA is the best and I leaned on and learned from you ladies who have gone before me. Thanks everyone!
Welcome to the newcomers. I would definitely, hugely recommend NOLA. I do not want to upset you with my minor issues (I had NO major complications). I hope you see that even if things are difficult at first they do start to get better and the Center really is dedicated to their patients.
Peace, Tamara
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Yes, my stomach was super tight which, I think, may have contributed to my nausea/low appetite/inability to put much in the stomach. Hard to know if it was bloated as I really did not look much. Had some pain and still do with laughing and sneezing (ow!) but not noticeable post op as my pain meds were too strong at first. Let the nurses know your concern so you can be reassured and rest better. Peace, Tamara
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Hard, bloated and painful belly after DIEP just about covers it. I felt SO much better after I had a BM. I had to stay on top of pain meds, too. I passed out just as I was getting back into bed after the first time sitting in a chair. At first I didn't believe my husband because I didn't remember it! Well, duh. Anyway, I didn't see it coming at all but the nurses took great care of me. Don't be afraid to ask for what you need. Maybe if you can get some more information from Laura about what is going on physically you will feel some reassurance. A lot goes on with that belly during DIEP.
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Hi Cherrie, Springtime and Karen,
Thank you for your responses and tips. I have looked carefully at the packing list and feel much more prepared. Also feeling pretty anxious. I really like to know what to expect ahead of time and it is great to be able to network with all of you. It is nice to know that there is support out there and if I have any questions or concerns while there I can can post questions or concerns along with talking the the docs and nurses. Thanks everyone! Michelle and Kathy, my thoughts and prayers are with you!!!!! Cheryl
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Keri B thank you so much. I pray I can work with the NOLA center. Just when through a biopsy today. They believe it is a cyst and are not that concerned but just going through the procedure and the waiting is hard. Trying to stay positive and hopeful everything will work out.
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Welcome Kerry A!! I felt an amazing relief too when I discovered NOLA, thanks to Sandy and a thread just like this one. That was in 2008! I hope it all works out for you. let us know what you find out in terms of insurance. There are other docs with different insurance too, but hopefully it will work out at NOLA, because of course we think this is the best place!
Michelle, hard, bloated painful, and it takes a while to resolve. This is when patience is a virtue! I also had plication, so it was even worse! hang in there. it will resolve in time...
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