Charleston Bound, part 2
Comments
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Mags & Marty,
Wishing you both a speedy recovery and celebration of last surgeries!
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Hoping someone can give me some advice.Tuesday it will be four weeks since my surgery.I am not regaining my strength.I feel out of breath easily and could go back to bed as soon as I get up.I sent an email last week,but have not heard back.I plan to see my primary care doctor this week.My drains are extremely painful,my hips feel like there is barbed wire in there,still putting out 40 cc a day.I am eating well,resting,trying to do day to day things but the exhaustion is starting to scare me.I am off all the pain pills,using Motrin only once a day as I have stomach issues and Tylenol once a day.I was so depressed ,crying multiple times a day but as soon as I stopped taking the valium,that resolved.I do think it is possible my fibromyalgia is contributing to my slow recovery.My doctor I know will be helpful,just knew your input would be good until I can see him.
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Carolina - are you still taking antibiotics? You should until after the drains are out. If your PS doc doesn't call you back, call again and email - take charge. You should still be tired. It was really big surgery with long anesthesia. Took me til 6 weeks before I was even close to feeling human. Be sure you doc will let you take NSAIDS - some won't due to bleed issues. Be sure your primary care doc talks with your PS before removing drains or doing anything much - with flap surgery there are issues that a primary may not be familiar with as they don't see them often. Did you have an inspirometer at the hospital (that little tube that you blow into) to help the lungs clear? If you do, pull it out and use it several times a day. That can help. If I remember, you had very long surgery - did you have a transfusion? You may have an anemia situation. I did with my flap.
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A lot of us feel that way at week 4, GTC. It's the 4-week blues, the feeling that you will never get back to normal and feeling utterly sick of being tired all the time. For most of us, this is followed by a day where you suddenly realize that you feel a little better and then every day gets better from there. You went through a lot and had a long surgery, so you might take a little longer to turn that corner. It's definitely good to check with your doctor and make sure that you are not anemic or that something else is going on. The recovery for the flap surgeries is LONG and this is certainly within the normal range. If you can, use extra compression, like washcloths in your "shark-bites" on your hips to try to get the output down. Also, I used the triple antibiotic ointment with pain reliever in it on my drain incisions when they got really sore and it helped a lot (as always, check with your doctor first). Also, if you try to do too much too soon, it really will wear you out. At 4 weeks, leaving my house would put me in bed for the rest of the day. At 5 weeks, I had so much more energy. It really can turn on like a switch! I hope that corner surprises you soon -- hang in there!
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Thanks so much Marty.....the antibiotics ran out a few days ago,there were no refills...I was told the drains can come out at 6 weeks no matter what...My discharge said to take NSAIDS as they do more than mask the pain.....My plan is to call my primary tomorrow,tell him what is going on and he will call SC for me....he is excellent and very proactive...and very protective of me...he was an ER doctor for years and he will not do anything without being sure it is correct.....I am blessed to have a doctor like him..then I will see him after he gets all the info he needs... I had the breathing thing in the hospital,it was not sent home with me..but I did have one here at home still in the wrapper from another surgery...more high tech than the one I had..I have been using it several times a day since yesterday and am not to where I should be.....that is according to the book that came with it...My surgery was 14 hours..and the trip home was excruciating,took much longer than planned ....when you mention the anemia it makes sense..I feel a lot like I did during chemo......I was anemic and had low potassium.... I will eat more bananas and oranges...beans....I was kind of surprised that I was not told to have a check up with my primary doctor...every other surgery I have had,I have had to go back once a week at least three times... ..
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LAstar..thanks! I have no idea what you mean about the washcloths.....but I am willing to try anything....There was nothing in my discharge about any of the incisions...... I only had a discharge sheet from the hospital,kind of vague and referred to DIEP. I did not get any paperwork at my post op visit,wondering if maybe it was forgotten somehow? I know this is hard for me as I am very active..not athletic..but gardening and cleaning house and of course in the barn...I will try to be patient!
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GTC, I put flat-folded washclothes over my bandages but under my compression garment in the divots of my hip donor sites so that there was more pressure on the places accumulating fluid. The less space for fluid to accumulate, the less output. Wow -- you are doing a LOT at 4 weeks! I was in bed most of the day at that point and hardly even doing kitchen work, much less barn chores! Good for you, but I bet that explains why you are so tired. If your doctor approves, I bet the pain reliever in the antibiotic ointment will help a lot. I had hip drains for 8.5 weeks and the incisions got a little ragged and infected. The ointment gave relief and the redness went away within an hour. Best wishes, tough lady!
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Oh NO!!! I am NOT doing all that...that is what I am missing!!!!! I am not allowed in the barn until drains are out..cannot bend to get down to weed....and barely doing any housework.....don't tell the board of health! I do not have compression......Dr.Kline doesn't use it....but I will have my doctor ask about it...and about the ointment.....I was not given any instructions for the drain sites..and in the past only had them a few days so nver did anything to them...I am making a list of questions...I really do think when the drains are out I will feel better..it is like I can feel them down inside the incisions...very hard to get comfy in bed..and when I do find a spot..I hate to move...I usually am pretty tough..but not feeling it now!!!.....
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Oh good! No compression! Wow, that sounds comfy.
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GTC, at times Dr Kline does use compression but only if he feels that it will help and not make things worse. When my drains came out prematurely (stopped working) he had me in bicycle shorts and then I could put the folded washcloth in as LAstar said.
At 4 weeks I was laying in bed when I wasn't up and trying to just walk. I felt tired all the time and slept when I could, which could have been day or night. I expected very little from myself except to heal from the ordeal (my op time was 14 hours also) I put my body through. Yes, the feeling like chemo and rads would be like what it felt like. At times I had energy but it was short lived, but as they said previously when you turn the corner it suddenly begins to feel better every day. I had drains in from the end of April through the beginning of July. Or at least 2 drains.
Send another email to Dr. Kline and copy both the PA, Kim, and his nurse Chris and tell them this is the second email and you hadn't heard back from the first. List the things you are concerned about and if you don't get an email back within the first day, call and speak to Gail or Kim or Chris. Someone will surely get back to you.
The discharge instructions are pretty standard from the hospital, but they are what the Dr has ordered for you. The boxes checked cannot be checked without instructions from the discharging Dr. But I know that you do matter to them and they want you to be as comfortable as possible.
Even though the Rx for antibiotics ran out, you should still be taking them. That is a perfect reason to call and ask Chris to prescribe a new Rx since you still have your drains and they are putting out as much as they do. They had to do that for me several times. I didn't want to get an infection so I was very proactive in calling and asking for Rx refills.
Ask also about the ointment with the pain killer - they may decide they would prefer you to only use the one they Rx - and you can get a refill if that gets used up - I also had multiple Rx for that.
I think one good sign you may not think as good right now is that you are complaining about the drains! WE ALL have complained about the drains!!!! And that seems to be a sign that you are moving from the pain in the flap area to the drain pain!!! Dratted drains! Some of the ladies on here have had more than the 6 drains I had and we all complain at the pain, annoyance and bother of them! So believe it or not, the complaints are progress!!!
The weeping is normal too, I would bet we all do that too or have done it. This is a serious, crazy ordeal and we are doing the best with what we have been dealt to get over it with as much dignity and grace but sometimes it just takes the release of the tears to help over a hurdle or two. My meltdowns were gushers!!! But time heals these wounds to an extent and soon it will be less and less.
The anemia and the low potassium PLUS the 4 week mark and the dratted drains all make for a really great excuse to cry when you feel like it, rest when you need it, and to have hope that it will soon be at the 8 and 12 week mark and you will feel dramatically different!
Hugs
Catie
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Just a Post script - my drains were not the usual in that I had another surgery late in May - so the drains needed their full time in. Most don't keep them as long as I did.
Also the reason they don't want us going to our normal Dr for follow up is like Marty said, the local Drs aren't as up to what goes on with this kind of microsurgery and the healing needed. I did go to a wound clinic and Dr. Kline was very proactive in speaking to the Dr before and during the treatment period (I had a wound on my flap from previous radiation). But your Dr sounds like he'd certainly be open to listening and talking to Dr. Kline. I would call Dr. K first and see if there is a direct number for him to be reached at during the time of your visit to your local primary Dr. But come to think of it, I think they were suggesting having a Dr at home to follow up if we could - my Drs said "NO, this isn't in my pay grade" (go figure!) So maybe your primary and Dr. K will truly be a great team!!!!
Hope this isn't too much info and that it helps!
Hugs
Catie
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Oh Catie....thank you...knowing you felt tired helps me..not glad you had to feel like it though!.I am feeling so much better this afternoon..this morning I had a feeling I needed to go to the ER,I really felt that crappy....I will be sure and get back on the antibiotics and will resend the email......can't always trust that it goes through..today is the first I have spent much time on the computer..so I am obviously on the way up,just not fast enough for me...My weeping was way beyond normal....I was crying with no provocation...it was the valium...I just can't tolerate those kinds of drugs....My doctor really is lovely,I have never in my life had such an excellent caregiver.....You are right,he and Dr.Kline will work well together...neither of them have that usual doctor ego....they are both in the medical field for the patients..and you know,I am sure I told the SC team about my doctor wanting to be involved before I got there and they were happy.....I know we discussed him pulling my drains....my head feels so much clearer...my flap and non flap are a little tight and sore..but I think once the drains are gone and I am moving normally,that will ease...so at the very most I have 16 days until the drains can go......thinking I am going to shop for a little present for myself for the day they come out! Thank you all so much......the sky outside is blue as can be and I am finally enjoying it... .
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Carolina - removing the drains makes a dramatic change. But, you really must call first thing in the morning to Kline and insist on getting those antibiotics started STAT. Really - that could be a lot of the problem. Please don't rely just on email. I remember at a little over 3 weeks I had to drive my husband home from a medical test. It was a 40 minute drive and all I had to do at the hospital was sit and wait. I was so tired when I got home that I slept for 3 hours and stayed in bed the rest of the afternoon and evening. I, too, had a helper doctor that was wonderful. She pulled my breast drains at 2 weeks and showed my DH how to do it so he could pull the hips. They were in for 3.5 weeks. We really all sympathize. In my case, I think the compression helped keep the hip drains from hurting as it stabilized them. I also would add a washcloth to pad them even more. Flap/non-flap will be tight for a while as there still is a lot of swelling. Really takes a while to go down.
Can you sit in a lawn chair and enjoy your beautiful upstate NY fall? Gotta be starting with a few leaf turns. It really will get better.
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I promise to call first thing in the morning about the antibiotics.I have been in and out a lot today.....it was a beautiful fall day.....have not been able to find a chair that I can sit in though ..have tried them all..with pillows and without! At night my husband comes and sits on the bed with me to eat dinner.......that foam pad is the only place I am really comfortable.I can sit here at the computer for about 10 minutes..then I get up...it is the drains..they sure need to come up with a better way to do this! I am going to try wearing some underwear.....when I first tried it made things worse...but may work better now....thank you all..guess where I am going???? Sleep tight!!!!.
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GTC have you ever watched Botched on tv? About botched plastic surgeries that are now being fixed? Well I cringe when I see our trusty drains!!! LOL. YIKES and they don't look any more comfortable on anyone!
Please do CALL the office tomorrow as well as send an email even tonight! I sent my emails at odd hours and usually got answered at off hours! I would explain how long you've been out of the antibiotics as well! I usually listed the dates of my surgery to refresh whoever answered the emails mind too. Just something to jog their memory.
Marty, how are you doing post your last surgery? Just a little bit ago, right?
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Catie - I am doing very well. Thanks for asking. Still wearing my nipple protectors, but some of the glue and stitches have come off. I am 3 weeks out on Tuesday. Last week I began walking on the treadmill and riding my bike. 3 more weeks and I can begin working with weights again. I am on Vinnie's schedule for February! That means that I will celebrate my 30th cancerversary with wonderfully iced new girls.
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Marty,I didn't realize you had gotten your nipples!And not that long until February is here! I talked to Chris this morning....she called in the antibiotic,told me I could set up to have drains removed and if I do not start feeling better in a couple of days,to have blood work done.But I think the iron is starting to kick in,I am tired but do not have that wiped out feeling..Drains will be out September 19 at 11 AM!!!Also told her I wondered if maybe the failed side did so because that was the side my port was in and all the chemo and herceptin and IV antibiotics maybe affected the veins and arteries.She said she knew Dr.Kline would want to give it some thought as he spends a lot of time trying to figure out what makes flaps fail.Also an option for me is to use the fat flap from under the arm and back and then fat grafting.Funny thing is,I have always had more fat there on my right(failed) side than my left,it used to be annoying..maybe it is going to be a blessing in disguise!
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There are some newer versions of the lat flap that do not take any muscle (a very good thing) and the blood vessels remain attached as they are. Much less chance of failure because the vessels are not touched. Nice to hear you being optimistic about other options. It is hard when a flap fails, but it happens and is now behind you. You might want to increase your protein - not from boost or ensure. Try some natural protein (salmon, beef, chicken, etc). And if you are really adventurous try liver. Can really go a long way to speed healing and make you feel so much better.
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Marty I packed on the protein and you are so right about it helping! You won't believe how time will fly before Vinnie time is here! And so worth it!
GTC so glad you talked to Chris, and I do think Dr K thinks a lot about what he can do or can be done to fix the failed flaps, he truly cares! Sounds like you might be on to a solution! Like I said my failed flap turned out better shape wise than my non failed when it was redone! Who would have guessed? And now it's like a memory that's sometimes hard to remember all of it (like labor) but I'm just happy with the end results.
Hugs
Catie
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catie...my failed and redone flap is also prettier than the original one. Too funny.Maggie
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Marty,
Who did your nips? If I remember right, dr k told me he didn't do skate flaps and making nipples would kind of mess up the shape of the mounds he made. I am thinking of 3 d but I bought the rub on and now really think I want the actual projection.
FTC, the protein advice is good advice. I bought whey protein and pit it just about everything. My onc doesn't want me eating a lot of soy protein tho as the research is still kinda divided on soy and bc. Latest study on this site says it may well be linked. At lot of the commercial protein bars are soy based. Lucky me, I love peanut butter straight from the jar!
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has anyone ever seen these?
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Dr. Massey did my nipples - it was a bow and arrow cut. Didn't change the shape at all. I did try rub on several times, but found that I wanted a bump. Maybe you should talk with Dr. K again. There are quite a few different techniques for nipples.
I think that Dr. M has seen the perfect pink. Very interesting, but expensive.
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found this
Insurance Billing Codes
After January 1, 2010:
ReForma is a covered cosmetic prosthetic device under diagnostic code (ICD-9) 174.0-174.9 which covers "Malignant neoplasm of female breast."
Medicare recently issued billing code (CPT) L8032 which is for "NIPPLE PROSTHESIS, REUSABLE, ANY TYPE, EACH"
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this is from pink perfect
Can I get a reimbursement for the nipple prosthetic?
That depends on the policy of your country’s ministry of health or your local health insurance policy. Please consult with your insurance agent. In the US, our nipple prosthesis is covered under diagnostic code (ICD-9) 174.0-174.9 – “Malignant Neoplasm (breast cancer) of female breast, nipple and areola”. HCPCS billing code (CPT) L8032 (“Nipple Prosthesis, reusable, any type, each”) can also be used.
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You can only try. I am paying for the tats myself as I doubt our military insurance will be friendly. Just worth it to me.
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dr k told me blue cross gives the problems with the tats and united doesn't. I have ferderal insurance too. One of the tattoo artists I was talking to told me that if she does them in the clinic in Jacksonville the insurance will cover it. In her office they won't.
Btw, I congrats in your 30 year anniversary. From your picture you must have been 2 when you were diagnosed! The only picture I use as an avatar is one of Faith Hill!
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Thought y'all might be interested: Vinnie in Washingtonian
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I found the cpt code. Thus is from united health but I think cpt codes are standards
- Nipple tattoo for post-mastectomy reconstructive purposes (CPT codes 11920, 11921,
11922); see the Cosmetic and Reconstructive Procedures Coverage Summary
- Nipple tattoo for post-mastectomy reconstructive purposes (CPT codes 11920, 11921,
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Marty, thanks for posting the Vinnie article. Fascinating. Makes me want to get tattooed even though I kept my nipples:-)!
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