Charleston Bound, part 2
Comments
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Martyj I had time to sit in the parlor with the founders photo and had time to read the big coffee table book also. It was so interesting to find out that at one time cancer patients were looked down upon as almost like lepers! What a beautiful thing your friend started. To see the people there have the ability to laugh with other residents, commiserate with them and to feel the love of the staff and foodie volunteers as yourself. Such a blessing. I had 4 different friends come and had my husband with me three different times, all felt welcome and comfortable. They accommodated each step of my extending my visit with such warmth and graciousness. I was just talking to my husband about it tonight.
And such an honor to that you know that lovely lady! -
I had consult today with hyperbaric oxygen treatment. If insurance says go ahead, I start next Thursday. Yikes. Crazy how I wanted to go under the knife to get cancer gone and reconstructed but concerned about oxygen! Hmmmm nutty sounding even to me. They took their time to answer all my questions and offered zannix if I needed it while doing the treatments. Anyone take the zannix? I guess time to be a big girl and just get it over with. But such. Commitment of time. None near me do the chair, closest would be 3 hour round trip, and wouldn't you know it, I am in a low mileag lease car! Not the smartest move to do that. So going to try it with the 13 mile trek instead.
No nail polish, no bra, no metal, no glasses, no hairspray, make up....no cell phone, books, kindle! They do have a tv above the tube and a DVD. I may catch up on Dr Oz and The Doctors, but hope they don't talk about HBOT while I'm intone! -
Gma--
I only have 3 hbot treatments left out of total of 20. You can do it. Def take them up on xanax. Im glad im in single chamber/tube. Dont have to deal w other peoples issues if they have ear probs etc and waiting on them. Ive taken xanax almost every time. Ive fallen asleep at least half of sessions. The first and last 15 minutes u have to keep yawning and swallowing because of pressure in ears but when they get you to about 30 feet and steady your okay. When she says im at 30 feet now, i ask so where r the fish. 😉
My eyes seem ok but hbot doc said to move my eye exam to 4 weeks after last session.
The hardest part for me is because i did hbot so soon after surgery that i still had alot of sgap pain and umcomfotable layin in tube and because i couldnt drive myself to get there. Am cancer soc volunteers and friends drove me.
Also switched to a new more qualified pt-clt therapist this week and will see her 2 times a week up to i believe my next surgery. My axillary cording is getting painful again and my arm rom still at 90 degrees. My lymphedema not too bad right now but probably because not active hardly at all and cooler. Still, LE paid me a visit the other night in chest wall/breast.
Def watch tv in tube to take mind off where you are and bring dvd. Im gettin burned out on hgtv so tomorrow watching ryder cup golf on espn.
Will they let u drive if u take a xanax? Im still taking oxycodone so tired from that but am weaning off.
Good luck with treatments inknow youve had a rough time of these surgeries so it will be good thing for you. How many sessions will u have. -
I always knew it would be more complicated to begin with doing the SGAP, but not quite this much ;( . However I knew I'd be worse if I did the TE and implants, so it's all going to be fine.
Dr K said about 20-30 dives, and HBOT Dr said 40 but they would use how I'm progressing. I have open wounds on the flap near incision and it has new ones every so often, so this is trying to get it under control.
They said I could bring my Valium rx from Dr K, I don't like taking it, so can only recall one if any that were taken from the rx. You bring up a good point about the larger chambers, never thought about that, thank you, maybe I'll quit wishing one was closer.
At first I thought I could bring a book into the unit, but won't be able to.
So sorry about your LE - and in your chest too? Are they going to be able to get in under control? I had 17 taken out on right arm 18 years ago, so always cautious. I was told that under 4 out was pretty safe. My new cancer on left arm had sentinel node with 3 out. Hoping it's true because I need an arm for sticks and pressure!
Hope the last HBOT goes well for you. -
Good luck Wednesday Jeskachi! Ooops, Thursday.
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Thanks for sharing your experiences with HBOT ladies. I start Oct 8. I have the option of doing two sessions per day for a total of 20-30 sessions. So, will go in for 2 hours at 830a, then have 2 hours for lunch and a brisk walk in the Seattle rain, then back again at 130p for another 2hour session. Going to be a very long day, and a long couple of weeks. I am planning on sleeping the first session, then reading the second . I will be in the big chamber so books are ok. I have to relocate to do this, will stay at a friends house but wishing I had a place of my own. 3 weeks as a guest is a long time. Have looked at renting short term apartment or medical housing but the cost is just too much, Wish there was a Hope Lodge nearby.
Pink so glad you are almost done! I hope that it has been beneficial for you (how do you tell?). Do you notice any changes in your eyesight? I had lasik surgery years ago so a little concerned about it.
gma10 good luck! Hbot has proven to do great things for wound healing. Keep us posted on your progress.
Jeskachi, good luck with the nipple!!
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Cascader~
Tomorrow is my last day of HBOT, for a total of 20 sessions. They say it keeps on going with you for a couple of weeks. I went to Target today and definitely had blurry eyesight issues trying to read signs, etc. I have special bi-focal contact lens, and I definitely saw the effect of HBOT on my vision. I scheduled an eye exam a few months ago, which HBOT doc said to reschedule to a later date which I diid (5 weeks post-HBOT instead of 2 weeks).
I'm not going to miss HBOT, but will miss the technician. She was incredibly compassionate and knowledgeable. Giving her a card and chocolate tomorrow.
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My HBOT just got approved by the insurance company, two das before actual start! For a little while I didn't think they would actually give me an answer in time. I had to call the insurance company ( per suggestion from the HBOT manager) and then the manager called back about an hour after my conversation with insurance company. Whew a close one. They are estimating 40 dives, and will be done one dive per day. I wonder if I could just go sleep there at night and get them all done in a week? (smile).
I had a whole bunch of doctor visits to schedule when I started driving again, and wouldn't you know that one of those was my opthalmologist who is very hard to get into to. They gave me an October appointment which I now have to reschedule until 8 weeks post HBOT, which will put me in major recoup time from my redo of left flap in Charleston. This Dr juggling is unreal! Today I had an ultrasound on my thyroid which was rescheduled from an appt before I was driving again. I'm getting dizzy just trying to think about it.
The HBOT Dr said it might make my nearsighted worse bt should go away at about 8 weeks. Pinkheart what did you do to be able to see and read? I wear progressive lenses on the weak side but have them for glasses and sunglasses. Did it change your distance or reading or both?
Cascader, have you tried VRBO for Seattle? Or Priceline an incredibly low amount for a 3 1/2 star hotel? You might get a good one for little money. I did the $65.00 bid on a 3.5 star and was shocked to see they accepted my bid and it was for Embassy Suites in Charleston. When you place your bid you have to give a credit card and are locked in before you know which hotel, but I was pleasantly surprised.
Does the ACS have something like Hope Lodge there, I know they don't have one per se, but perhaps they do something like it - I never knew they would provide drivers, and Pinkheart was able to get a driver, maybe there are special rates through ACS.
Jakeski hope all is going well in Chicago!
So good to read about others going through the HBOT you all gave me courage enough to actually do it! -
GMA10~
Good to hear your insurance approved! I thought life was getting easier because mine was approved in just a few days, HOWEVER, today after I got home from my last session, I opened mail and got an EOB from insurance company for half of HBOT sessions and it said it was NOT covered!
It turns out that the hospital billing department submitted the wrong diagnostic code to BCBS. The HBOT doctor and staff submitted the correct code to their billing department so not their fault. So just spent an HOUR of my time on a 3-way call with BCBS and HBOT office staff getting it straighted out. Why does all this insurance crap have it be a such a PITA?? Even though I knew I didn't have to pay anything, it still stressed me.
BTW, the bill for 20 sessions of HBOT comes to $35,000!
I can't quite explain what my vision is doing - I would just call it blurry. Wondering if I should push my eye exam out further like your doc said. I was told 4-6 weeks after last session . . .
I'm so glad it's over -- kinda getting burnt out on HGTV.
Got a big hug from HBOT tech who took care of me everyday. Lots of warm wishes to both you and Cascader with your sessions and for your next surgeries!
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Pulled the drain this morning that Dr M put in a few weeks ago and guess who has a 102 fever and horrible low back pain? Yup. Sent her a text just waiing on what now.
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Boo Sherry. You came into Charleston the night of my surgery. Wish we could have met. Hope the fever gets gone quick! Healing vibes.
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Oh no Sherry,you have been through so much. Hopefully some antibiodics will take care of it pronto! Thinking of you
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Sherry~ Hope this is just a very brief set back and you are feeling good again soon. Are you still on antibiotics? I just got my drains out after six weeks and was told to keep taking antibiotics until drain holes closed up. The antibiotics make me feel a little puny and glad to be off of them finally. Although they'll be back for December for who knows how long.
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Sherry, I hope you went to the ER for blood tests and a urine culture...We have a nasty flu-like illness going around right now, high fevers and body aches but negative flu tests. Maybe that's it, but with that variable of a drain, you can't assume.
Let us know...
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One thing I've heard is to not play around with those symptoms, Sherry, glad you are on top of it, hoping its treated easily. Didn't you go to Charleston recently with a Seroma? Or am I confused?
Pinkheart I think I'll check with my insurance to make sure they pay for it all. Good grief. I've met my deductibles for in network and for out of pocket for the year, so hope it's all included. Do you know what they actually paid? Big difference with my insurance on what is billed and what is paid. Although I think our Drs deserve all they ask for!
Thanks for sharing that so I ac check it out up front. I have 40 dives approved. -
GMA,
The hospital billed $1,712 per HBOT session and they will get reimbursed by insurance for $1,010. I had 90 minutes in a private chamber X 20.
Insurance rep called today to tell me everything is straighted out and reimbursed at 100% -- so I about had a heart attack for nothing.
I believe the hospital appeals this to try to get more reimbursed themselves. The doctors do from what I have been told.
Wow - 40 dives. When you and Cascader are done we all should get an award for being a "patient patient."
So at 40 dives, sounds like your HBOT therapy will be ~ $70,000!
When is your start date?
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My start date is tomorrow a.m., I go in at 9:30 to get photo'd and wound changed into something they will allow in the chamber. Dive starts at 10 and ends at 12.
I know about the $70k, when you wrote what yours was I was very concerned about my bill or could be bill. I called and checked with the hospital, they said that as long as my deductibles were met it was at 100%. I could not afford to pay even 10%,good grief, now I know why it took so long for approval.
When this is all over we should be certified in something! Cascader when is your date for the HBOT?
I'm hoping they do 30 now and then save some for after the redo of the left breast. I want to get this out of the way before the holidays and do not want to be in the chamber the day before or after Thanksgiving! Good thing they don't work on holidays.
When I did radiation 18 years ago it was the same schedule but for a max of 15 minutes in the actual treatment. So, I get it that they don't do this kind of stuff on holidays.
I think I'll bring some of my fav movies with so I can just get lost in the movie and not distracted. But sounds like the first day I should watch tv?
Does the blurry eyes start right away or is it cumulative? Can you read or watch tv with the bluriness? And did they say anything about driving yourself if you could?
Sorry about so many questions, but if I need to get rides lined up I need to start now. They didn't say anything to me yet about not driving myself. They did say they could get me out of the chamber in 2 minutes if an emergency or 6 minutes if I had a personal emergency.
So glad you have pioneered it for us, Pinkheart. -
I dont start until October 8. I better double check my insurance. Wow !
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GMA,
For me, it seemed my vision changed around session 15. I wore a hospital gown in the tube/chamber. They check clothing to make sure no polyester - it can cause a spark. I still had drains the first 3 weeks which they said would be better if drained before I go in.
Don't forget to use the ladies room before. There was only one day that I thought I was going to ask them to cut my session short - bladder was screaming for some reason even though I went before.
If you have ear problems they may ask you to use nasal spray. I used an Rx - Nasonex, but you can use Afrin.
My chamber was very private with a curtain pulled all around it and the lights in the room were dimmed.
You should be able to drive. Do you think you will take xanax? I started HBOT less than 2 weeks post-op so I couldn't drive at all, was on narcotics, and butt pain. So I had to get rides the first three weeks. If you call the Am. Can Soc., and ask for Road to Recovery, they will already have you registered in the system since you stayed at the Hope Lodge. They had all my info already because I registered for Hope Lodge, but didn't get called with an opening to stay.
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Pinkheart, so grateful for,your insights. You have been through so much, hoping this HBOT did what is needed to help a lot!
I am going to try not to take the Xanax the side effects sound like things I don't want to mess with. I am going to try to drive myself I think. It's not too far. I still have some pain in the back bunny tail area but that is fleeting and laying on it helps, so thinking it might not be too bad. I looked at the room with the chambers and there are two parallel to each other with no curtains. Will be an experience tomorrow. Tummy has been acting up all day, I get my stress in my tummy, they assured me they could get me out if I felt I needed the restroom.
They told me to make sure and eat before I went in to make sure my blood sugar was normal (don't know where that comes in, but will do my usual) and will make sure I use the lady's room as well.
The unknown is always worse in my imagination. I had a wound vac while in Charleston, my wound came apart and the thinking about it overnight coupled with googling wound vac had me freaked. However it was not so bad or scary in actuality. Dr Kline was patient, kind and expert on setting it up on me. But freaked me out before I experienced it. I'm sure this will be the same scenario minus Dr Kline of course. But I thank you for giving me courage to go ahead with it. I think. (smile) -
GMA, Forgot to say. They put bottled ice water in a special container in with me, as well as a ziploc bag of wedding mints. They do that to help blood sugar levels and they just dissolve in your mouth. I'm surprised no curtains. Although I didn't see anything, I know there were some patients being brought into the other chamber with serious injuries, etc. I would not have wanted to see that. All patients wear hospital gowns which we know sometimes get too revealing like trying to get up to sitting position when done. Also, yesterday the HBOT doc checked my ears and vitals and then he removed a suture in my butt that was poking at me causing pain. So nice to have curtain for sure!
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I finished day one, off to a rocky start though, as they didn't have a copy of my last chest X-ray, but they put me in a spot at 1 instead of 10 . Heavy prayers for the peace that passes understanding and visualization of snorkeling got me through it. I thought that I would be fine if I could just get through one.
They have me using ear wax stuff for a few days. Did they check your ears and give numbers associated with the ear count? Also re dressed my wound with cotton only stuff and gave me a sippy type cup with water. No mints! I could have used the mints, however, I got really hungry by 1/2 way through.
I go again tomorrow this time for tha 10 to noon slot. No curtains, lots of blankets under over and on my shoulders. Will try bringing a movie and seeing how that goes.
It may not be a full 40 times right now, per the tech, it might be 20 now and then 10 after the next surgery. But won't know that for a while. Good grief the stuff you have to sign waivers for!
I was the only one in the room besides the tech and the Dr. Interesting to see if that will last long.
Funny how they let you bring plastic in the chamber! Thanks so much for all your info. -
Fever is down. Dr Massey wanted me admitted with an ID DR directed what abx I needed and a CT to make sure there are no deep pockets of fluid that could be brewing a bacteria or retained sponges..... I didnt go in (hubby out of town so no one for the kids). I got a rocephin shot at work yesterday and today. They did a urine on me which showed I may have a UTI. The day after the fever spike it stayed under 101. Yesterday was in the 100's and today under 100.6 all day. I have a CT scheduled tomorrow.
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I had my outpatient surgery with Dr. M today. She gave me a local and took a couple small nips and tucks out of my left nipple, and it looks great. It was nice to not have to deal with a general, no IVs, short visit at the surgical center. We chatted while she worked. The only downside of being awake is how cold it is in those ORs! I guess when you're knocked out it doesn't matter. I don't know how the docs and nurses work like that.
Dr. M is pretty popular at this surgery center (no surprise there). One of the other docs (anesthesiologist) there who introduced herself to me today had bilateral DIEP with her this past June and is done in one stage! Lucky her.
So hopefully this is truly my last surgery. Office visit with her next week before she leaves Chicago. I'll probably get tattoos later, not sure when, no rush. My coloring is pale so I don't need much to look "normal". One side pinks up on its own so it's pretty normal already.
Sherry... sorry you're having such troubles with infection. Sounds like you're going in the right direction now though. Good luck with the CT.
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Sherry, so glad things are going in the right direction. Hope the CT is clear or at least shows what the culprit is (was). Take care and get some rest.
Brenda, Sounds like you are wrapping things up and moving to the end of your journey. Thanks for the update. I hope all continues in the right direction. Were you at 900 N. Michigan?
Best wishes to all.
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Brenda, who is Dec 27 Stage ????? with Dr. M in Charleston
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Sherry...let us know what your CT shows. Hopefully you are on the mend with the fever going down! What an ordeal for you. I was on 2 antibiotics twice a day for 15 months. Had to see an ID Dr. every month. Was finally released in July. I tolerated it well, with no issues at all.
Brenda....Congrats to you!! I celebrate with you...how nice to finally be finished!!! -
CT showed an abcess in lower back so interventional radiology is going to put in a drain and do cultures. Im scheduled for the 27th of Dec but may opt out. I don't know.
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I am glad that they discovered the cause Sherry, one step closer to healing.Thank goodness it was not retained sponges, always been a fear of mine. How are you feeling now and what is the next step for you? What do you have scheduled for Dec 27th? I know you have been through so much. I send you healing hugs.
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Hope you are feeling better Sherry.
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