NOLA in September?
Comments
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Katiejane,
I'm crying tears of joy for you! I have had a good feeling all along about your getting to go to NOLA, so glad you didn't give up. Can't wait to hear your date!
I can't drink Margarita's (long story) but I'll toast you with my red wine this evening. Hurray!!!
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.... I think I might want to hear the margarita story... !!
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Caitlin.... I wore green panties yesterday!
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Thanks Caitlin.. my son's prom (his date wore the coral dress)... and congrats on one more chemo down!!! The end is in sight
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katiejane - your persistance has paid off. I am thrilled that you are able to take the path that makes you feel good about all this. It is so worth it. This whole process has been the easiest thing I have had to do medically. Be well!
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The Margarita story involved water, sand, a sinking boat and man (actually woman) overboard!
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hmmmm... tell more (or should we just imagine the rest?)
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KatieJane- I am so happy for you. You should feel very good and celebrate!!
My insurance is still standing to their denial after my local PS wrote a letter referring me to NOLA. They are saying that the denial still stands because I could get implants in network and will not pay for out of network benefits.
My hearing is next week and I am gathering all the data I can to support the case.
This good news helps others keep pushing ahead!
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Kerry - this always makes me so crazy. How do these insurance companies think they can dictate the type of reconstruction you should have? Please utilize the wording in the women's health and cancer rights act that states that reconstruction is between you and the attending physician. I don't have tine to look it up right now, but will later if you need it!
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Nordy, thanks for wearin' the green undies! :-) I love it.
Michelle, I am sorry to hear about your friend. This is a horrible disease.
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The margarita story is hilarious!
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I am having bilateral DIEP at the end of June by choice to replace failed implants from reconstruction done 13 years ago. Some of the posts I read here scare me! My thoughts are that I already had all that stuff removed long time ago, how bad could it be? I also had a hysterectomy in 2004 and bounced back very well quickly. I fly out of Chicago on June 24th and fly back July 4th from NOLA. I planned to return to my desk job on July 5th. I also work from home so my desk is really only five steps from my bed. I would rather work at my desk and earn my paycheck to pay bills than sit in the family room flipping through channels bored. Am I being too optimistic? Will I need therapy and such?
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Anita... I was able to do computer work no problem... but if you can put your feet up and use a laptop you may be more comfortable... Flying home July 4th and working a full day July 5th may be too optimistic. I was super tired. I have never had therapy, but everyone is different.
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Thank you one and all for your support!!! I think I'm still in shock!!! Kerry, It was very difficult for me to fight this fight but that is me. Emotionally, it really drained me. But DO NOT GIVE UP! I have coverage for both Sullivan and Massey plus I have already met my out of pocket. Since my insurance would not budge on coverage for for the facility I called The Center to see if we could work something out financially. I wasn't holding my breath but to my surprise they were absolutely wonderful to work with!!! They came back with something that was very reasonable and I'm just waiting for them to get back to me with a date!! Hang in there and keep pushing!! Maybe you would want to touch base with The Center?
One more thing-after 2 denials and a peer to peer consultation I was told by my insurance if I wanted to appeal one more time, it would need to be sent to a National Appeals Board. My case manager told me many things that have been denied by insurance's are overturned at this level. That is also worth looking into! Please let us know how you are doing! HUGS! Katiejane
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Anita,you may tire quickly, and you may be in a bit of brain fog from pain meds. If you can work and take rest breaks, and not have too much brain fog, you may be ok. I was shuffling around and alert enough around that time. My endurance was a bit low for awhile, but not bad. To think you'll start pulling full days from the get-go is probably not realistic, though. I'm not sure how many hours you will plan to work. Your body will need to take breaks and rests for a couple weeks
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Katie, congrats on your persistence and your success! I have to admit that I ran out of stream on my appeals for coverage of my october surgery. The issue was symmetry and who gets to decide what is symmetrical enough - me and my surgeon or some retired neurosurgeon making extra money denying people insurance reimbursement. Really pissed me off! I even sent a photo, which to me, said it all. Their response was that it was minor and not the intention of the Women's Health and Cancer Act! Like who are they to say that! They refuse to meet with me, eventho my State attorney general has sent them very stern letters. But your success is getting my juices flowing again! Maybe I can bang my head against the wall a couple more times.
Kerry, good luck with your case. it is definitely worth the fight!
anita, I think u might be expecting too much from your poor, healing body too soon. But don't worry, it will make its needs known and you will have to listen!
Michelle, so sorry about your friend and her daughters.
Caitlin, I don't think I have green panties...
Hi nordy!0 -
Anita- I think that may be too optimistic. I also think you should clear it with your PS first. They'll probably also tell you it's too soon to work full days. In addition to being tired you need to keep moving, and working at a computer tends to make you sit for long periods of time--that won't be good for your ab healing, trust me. Taking care of drains, showering, dressing, getting enough nutrition, getting enough walking in... that's a full-time job for a few weeks at least. It gets easier as you lose drains and get more energy.
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Anita, maybe a few hours at the most. You'll be totally exhausted. Surgery is controlled trauma--your body will need tons of rest to repair. You'll be on pain meds, perhaps. And certainly from everyone's experience here, if you do too much one day, you'll be set back for the next two!
Everyone's different, though. I know of a physician who went back to full work two weeks post op. It was brutal, but she did it.
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Kerry ~ I have to concur with Nordy. I don't believe your insurance co. can mandate why type of reconstruction you have. They'd like to; it's up to us to stand up for our rights!
The federal law states: "in a manner determinded in consultation with the attending physician and the patient". NOT "with the atttending physician, patient and the insurance company"!
Here's the actual verbage of the Women's Health and Cancer Rights Act of 1998:
Sec. 713. Required Coverage for Reconstructive Surgery Following Mastectomies.(a) In General - A group health plan, and a health insurance issuer providing health insurance coverage in connection with a group health plan, that provides medical and surgical benefits with respect to a mastectomy shall provide, in a case of a participant or beneficiary who is receiving benefits in connection with a mastectomy and who elects breast reconstruction in connection with such mastectomy, coverage for:Reconstruction of the breast on which the mastectomy has been performed;Surgery and reconstruction of the other breast to produce a symmetrical appearance;Prostheses and physical complications all stages of mastectomy, including lymphedemas; in a manner determined in consultation with the attending physician and the patient. Such coverage may be subject to annual deductibles and coinsurance provisions as may be deemed appropriate and as are consistent with those established for other benefits under the plan or coverage. Written notice of the availability of such coverage shall be delivered to the participant upon enrollment and annually thereafter.0 -
I appreciate everyone's posts about the insurance. I am tenacious. The day I got this news I was sad and upset. I realized I had to keep fighting. Since I work in HR and manage benefits I have reached out to all my resources. I also decided to enlist legal support based on all the valid points addressed the Women's Health and Cancer Right Act. I also attended a seminar today put on by our insurance company on wellness. My goal was to meet some the grievance committee members at the seminar and talk with them but that was not an option. My grievance is next week and I am hoping they will remember me. I purposefully sat in the front row at the conference!
I was inspired to write my statement for the grievance meeting today and feel good about what I have put together. At least I know it will be all my own thoughts and words and I can walk out knowing I put in my ALL to this hearing.
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Thank you for the feedback. I talked with my supervisor today and he gave me the flexibility to work a few hours at a time with naps if needed. I'm really happy my employer will work with me that way. I'm going to have to rethink some things and make more preparations before hand so I can use my strongest times of the day for working. I will have four days to rest after I fly back home and really can't afford to be off much longer than that. I am saving one week of vacation pay for stages 2 & 3. I'm going to push fitness a bit more now and try to go into it with as much strength as possible. Wow, I really have been under estimating the impact this is going to have on me.
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Anita... just plan for getting ready in the morning taking about an hour... between showering, cleaning wounds, getting dressed and resting in between each stage... it is exhausting. No matter how strong you are going in, everything you do is tiring and you'll need a break often.
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Anita, sounds like a plan When is your surgery date? Tell me some details and I will post you up in the list!! Who are the docs, hospital? Type of recon? whatever you know. See examples in listing above.
Katiejane WHOOOHOOOO!!!! So happy for you!!!
Caitlin, every time I wear by green jacket or bike top (a real kelly green!) i think of you! I had the same bad days in chemo 5-8, sounds totally normal. You're getting there now! Soon you will be done!!!
I am HOME!! So nice to be home...
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Next time you head north, let me know!!!!
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Sure Springtime- I am having stage 1 for bilateral DIEP with Dr Marga Massey and Dr Scott Sullivan at St Charles Hospital on June 26th to replace failed implant reconstruction.
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Anita - welcome! I had failed expanders and hip flaps done with Dr. Sullivan! You are going to the right place!
Caitlin - did you notice that Anita (willy5js5) is also a long time triple negative survivor? It seems there are quite a few just on this thread! Please let your sister - in-law know! Plus, if it was the medical oncologist telling them that triple negs do not respond well to chemo (which many don't, but so many of us do - my tumor was nearly 4 cm at diagnosis & it shrunk to less than 3 mm by the time I had surgery) maybe a second opinion would not be a bad option? I have learned that it is really good in the cancer world to get at least two different doctor's plans, and then research it out myself. I think if I had gone with the MO at my breast surgeon's office, I may not be here right now. He only planned on doing 4 rounds of chemo. The mo I went to did 16 and (knock wood) I am still here. In my opinion, it pays to research!
Katiejane - I am still doing the happy dance for you!0 -
I competely agree with Nordy about the importance of 2nd and even 3rd opinions and the importance of doing extensive research on your own. I am sure many of us (maybe most of us) on this thread have their own stories. One of my experiences - the first surgeon I saw when I was diagnosed looked at my mammogram and scheduled me for a lumpectomy. I was looking at the same mammogram with him in his office and to me it looked amost completely white - turns out I had dense breast tissue. So in the office I asked him how he knew there was only one tumor. He did't even bother to respond to the question. I decided to get a 2nd opinion and the 2nd surgeon immediately scheduled me for a MRI. After additional biopsies my surgery was changed from a lumpectomy to a mastectomy. Turned out I had multifocal bc - two additional tumors widely spaced in the same quadrant. If I went with the first bs I don't know if I would be here writing on this board today.
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And for me, fearing the same, chose a BMX and the path report was clear for the remaining breast tissue, but that is fine by me.... Now I know it was clear, and I know I won't sit for the rest of life wondering. I asked myself if I would regret a MX if no more cancer was found, meaning it was not a necessary surgery, but I knew ME and knew that unless I KNOW its clear I will worry it isn't.
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Thanks Nordy!!!!!!! Me too!!!!! Couldn't sleep at all the other night-kind of thought that might happen!!! Still waiting to hear my date!!! It will really hit me then!!! Probably another sleepless night in Park City.
Glostagirl, Thank you for all of your support!!! I'm glad you believed in the process! So when is your surgery? Glad to hear your leg is healing and I hope your red wine was as good as my margarita's!!!!! YUM!!!!!! Lucky you to be back on the East coast-wish I was back in Maine!
Ok, I'm lazy----does anyone recall what page the NOLA packing list is on????
HUGS! Katiejane
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KJ- The link to the packing list is in the header of this thread.
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