NOLA in September?
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Well, I'm one of the few patients of Dr. M who flunked the lymphoscintography test. My right leg has much slower uptake than the left leg, so she's not going to take any lymph nodes from that area. I will have to see how the lymphedema reacts if at all to the DIEP and then may have to have the vascularized lymph node transfer from the neck at a later date. I'm bummed, but still looking for to my new boobs. I will also have a pretty good looking tummy afterwards, it seems. Tomorrow's the day!
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Mary, no path is a smooth one! I've said this at least a dozen times over the past year and a half. We are all pulling for you. You are in gifted and caring hands with Dr. M and the staff at SCSH. Rest up. I will see you Friday or Saturday if you're up to it. Peace - Terri
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Mary - Mags20487 had the lymph transplant using nodes from her neck. When I had dinner with her in August, the scar was invisible and the transplant had helped. Rest well tonight for your big sleep tomorrow. Hug Dr. M for us!
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Mary, good luck! You will do great. As for the lymph nodes... I lost 11 nodes on my left side and 2 on the right with my bilateral mastectomy in January. The lymph edema has been horrible since- my left arm looked like a full out Popeye muscle! Anyway, after my DIEP in August I haven't had to wear the sleeve hardly at all! It's still puffy, but does not hurt as bad and feels much better without the sleeve. They told me that the lymph edema might get better after, and it did! So, praying you will have some relief as well. You are in great hands. The entire staff at SCSH are amazing! The PT, Kristen just about put me to sleep every time she did the lymphatic drain!
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All the best to you Mary. The diep sometimes does help alot. There are many lymph nodes in the belly that when moved to the chest can take over and help move the fluid. The lymph node transfer became necessary for me after the failed diep on that side and subsequent gap surgery where I got a massive cellulitis infection. Cellulitis was a real problem for me and Dr M did not want to risk anymore surgeries on that side before doing the transfer. My results as Marty said are spectacular. When I saw her 4 weeks ago she could not believe how well my arm was doing. I have since stopped wearing my sleeve and glove daily and have had no flare up...so exciting!
Maggie
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Thank you all for your encouraging stories! I'm waiting now to go in. Very excited, as well as eager to wake up on the other side.
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Maggie, what causes cellulitis?
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when the lymph fluid sits and collects in the limb or area you become susceptable (sp) to it. Any damage to the skin increases the risk of bacteria entering the area and then it cannot pump out so it causes the celluitis...that is just a simple explanation. For me a couple of times it was a bug bite and other times we could find nothing for a cause. Sunburn, bruising, scrapes, cuts...the list goes on. This website has tremendous info about Lymphedema and how to care for it
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MerrellGirl, I added your Nov 11 Stage 1 surgery in the listing above.
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Thank u springtime!
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Hey everyone! I'm about to leave the hospital, and they want me to sign a bunch of medical/legal documents for a take home inflatable leg cuff machine. Is everyone now asked to do this? by signing these papers I verify the device is in good working order (but I don't know that it is), and that I understand all this legal language, and accept liability for the machine. It's too much for me right now.
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Kin, I was given one and it was no big deal. They had me use it for a month and then send it back in the prepaid envelope.
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I had one as well. The nurse put it on me as we were leaving the hospital. I used it for 2 weeks and mailed it back in.
Jana
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probably just standard legal language. Basically, they just want you to return it in good shape. Nothing to really worry about
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Using mine now. Actually feels good. Using for a month and sending back. Good luck in recovery.
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Hi Ladies... Good luck to those you just had surgery and to those about to have it. Just have to say that I bet a lot of people approach SCSH the first time and wonder where they are with the simple wearhouse facade out front. Makes walking through the front door (or back door) even more amazing.
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I would like to announce that AFLAC accepted my visit to Vinne for lodging and travel fees. I challenged them on this and they have just now sent me a check... I will keep them! They have been very very LOYAL to me during a difficult time. Thank you AFLAC
Does anyone know why this site keeps disappearing from my favorite topics?
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Stix, I imagine it disappears from your favs because you accidentally click the "remove from favorites" when you intend to click "back to top". I think we all do it from time to time. Sometimes I wonder if it really isn't a freudian slip.
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Nope- not a Freudian slip from this Girl...
. This is the only site I keep disappearing from. Maybe it is a ghost... haha0 -
Thanks for your comments and advice about the DVT machine. I wish they had prepared me better for it and also involved my caregiver in the instructions. I was in no mood to try and figure it out after a long wait at Walgreens and a very long and bumpy trip to our temporary "home." But I did use it, and I was even able to sleep a little, and so I feel just a little more sane about this today and in general.
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Kim, I got so used to the machine over the month that I actually had legs cramps for a couple days after I quit using it! It holds up really well. But, make sure you charge it every chance you get for your trip home. It does not hold the charge as long as they say it will.
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I finally won the battle to get some Miralax here at SCSH. Hope I win the war easily.
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Aw Mary, you do know it takes a couple of days to work. Drink, drink, drink - it can really help!
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Mary, I hate I didn't see you while at SCSH. My daughter was ready to GO as soon as they said I could. I hope the wedge made it to you and it helps wherever you recuperate.
Info to all that have only done stage 1: This is my second stage 2 and it was unbelievable. I already look fantastic. The tiny imperfections are now perfect. I was up and about this morning (after Friday noon surgery) and am home now. Easy Breezy
Kim_L - I didn't have to take the SCD pumps home, but have used a halter monitor for cardiac rhythms several times and they required the same paperwork. It was never a problem and the 800 number they provide will answer any questions you have. The pumps are very important so I would use them. You shouldn't be held responsible for normal wear and tear. Just send them their letter back with the return saying you are returning them in the same condition you received them.
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Terri-I did get the wedge delivered by one of the techs. I wish I could have met you. I'm sure it's going to help tremendously!
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I am back home after Stage 2. Dr D planned for 4 hour surgery, but it ended up being 8. I woke up with 6 drains, but had 4 pulled before I checked out of the center. I had to stay an extra day—I had a transfusion. That voodoo magic blood fixes me up every time! My last 2 drains don’t have that much output—I suspect they’ll be out by the end of the week.
I am very hunched, black and blue, and woozy from the meds. Other than that, I feel terrific! I had plication and the tummy—does anyone know how long until I will be able to stand upright? My shark bites are gone, but my butt looks flat. I wonder if it’ll round out or stay this way once the swelling goes.
I hopped on the scale today and I am up 8 lbs—that’s a lot of swelling! Trying to take it easy.
Mary, it was great to meet you in real life. Hope all my surgery buddies are healing well.
thanks for all your support, you amazing women!
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Dixie60--great to meet you too! Your beautiful smile has stuck with me since that morning. I too had to have the transfusion--two units. I was in a very long time, but not beyond what's expected for a Stage I. I've had BP going up and down like crazy. Hope it has finally leveled off. I think I'm going to be happy with the results even though obviously right now they don't look good. I can tell there's lots of volume. Also lots of removal of volume from the tummy! I could not tolerate the Lovenox shots for blood thinning, and I'm black and blue all over--especially where the BP cuff was on my arm. She discontinued that immediately.
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As the Queen of Constipation (ref Mary's post above), I started bringing my own bottle of Mirilax and started 3 days prior to surgery, and just kept it up in my room afterwards. Solved all my "blockage" issues (which made me completely miserable!!) I also had hit or miss luck with getting constipation meds from some nurses. Decided to take the bull by the horns and just bring my own stuff, because you need it for recovery in the hotel anyway! BTW, Mirilax is superior to stool softener pills, according to my doc. for the record!
Lilly2015 and Kb33, I am adding your surgeries to the listing above now... We have our first surgery for 2015!!
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Hello ladies,
I am scheduled for my Stage 2C on Thursday of this week with Dr. D. I am getting a tiny bit nervous because I've had some sort of cold/cough for about a week and it is just starting to get better, but I'm still congested and coughing quite a bit at night. I called the center last week when I felt it coming on to ask if they ever cancel a surgery due to illness. The person I spoke with said unless there is a fever or infection, they generally go ahead with it. I just wondered if anyone had a similar experience with being a little under the weather before surgery? I guess I've been lucky enough with my prior surgeries that I've gone into them feeling 100% healthy, so this is making me a tad nervous.
Thanks,
Sydgrace
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I'm 6 weeks post GAP flap now, went back to work yesterday,1/2 days for one week. I'm so glad I did that because I am still tired. Springtime, my stage 2 is scheduled for December 5 in NOLA. I am getting stronger everyday, I hope I can handle another surgery just 2months away. I have had my hip drains removed for about 3 weeks and have had to have my shark bites aspirated 3 times now, they get anywhere from 80 to 100cc each time. Have any of you had to have your hip donor sites draned?
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