Charleston Bound, part 2

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  • Amoc1973
    Amoc1973 Member Posts: 158
    edited November 2014
    Hi. I am going to charleston to see dr Massey for lots of testing and a consult. Im think I'll rent a apartment or condo on airbnb.com. Any suggestions on which area I should stay? I've never been before. I'm looking for a nice area that's not to far to her office, the hospita, & imaging specialists.....all places I'm going to have to go to for this visit. I'm also going to have surgery in January so I'd like to poss use this place to stay for recovery as well. Any info would be great!
  • MartyJ
    MartyJ Member Posts: 1,859
    edited November 2014

    Hi Amoc - I am one of Dr. Massey's patients, too, and I live here in Charleston. Her office and the hospital are in historic Charleston. I am not sure which imaging specialist she uses. Some of the Airbnb places are a bit "college oriented". If you PM me I can help you a bit more if I know budget, timing, etc. There are some zoning laws that prevent rentals of less than 30 days in most areas. Costs can be high here. Remember, you will need someone to stay with you for the first couple of weeks post surgery.

    Here are a couple that are within walking distance and look good:

    Bennett Street: https://www.airbnb.com/rooms/1392245?s=WqbO - Looks like a basement as the walls appear to be cinderblock.

    Murphy's Court: https://www.airbnb.com/rooms/4371124?s=Un2X - Again in walking distance. Really cute little alley.

    Orr's Court: https://www.airbnb.com/rooms/3780736?s=91ZX - looks great.

    Chapel Street: https://www.airbnb.com/rooms/4021535?s=91ZX - a long walk from Roper, but I would do it. Great area.

    This is just a short list. There are lots of great places listed. Happy to help. PM me if needed.

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2014

    Just returned from Charleston and the first "Flapper Reunion" of hopefully many! Such beautiful weather for most of the time there, and the view from the B and B (the Battery) was awesome! Thanks to Pinkheart for steering us to Peninsula for a great dinner the first night, to Drs Kline, Craigie and Baron for a delightful dinner with both Gail, Chris and Kim and the biggest boatload of sushi. So fun to sit with the most awesome Drs and staff and laugh and chat! Talks of doing this annualy, so hoping more of our flapper sisters can join us!

    Sewaneegirl took the most awesome photos!!!

  • cascader
    cascader Member Posts: 599
    edited November 2014

    ahhhh. I am jealous! Glad you girls had a good time with lots of laughs. Sorry I missed it!

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2014

    Cascader, we all wished you were able to make it - next year for sure? The dinner with the Drs was the second night. Other than the dinners, It was so special to sit with people who have been there and done that with the reconstruction process and how it has affected our lives so far. Truly memorable.

    Hopefully next year we can plan it better to make sure more can come and join us!

    Hugs

    Catie

  • Amoc1973
    Amoc1973 Member Posts: 158
    edited November 2014

    wow guys thanks! ill def check those links & will PM Marty. Anyone have the lymph node transfer & wanna share their results? I'm hungry for info! Thanks so much!!

  • lbrewer
    lbrewer Member Posts: 766
    edited November 2014

    wish I could have made the reunion. sitting here on pins and needles waiting for my new grandson to arrive.

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2014

    Lbrewer, congrats on the inew grandbaby to be! Certainly worth hanging around for! Hoping next year you can make it. The neat part is we continue to learn so much from each other even after we are through different stages. I had so many "oh, then I'm normal" moments when sharing experiences with Pinkheart and SewaneeGirl ( and talking to the Drs and PA's and nurses and Gail in a comfortable relaxed setting). Lots of fun and lots of bonding. So hope you are able to join us next time.

    Hugs

    Catie

  • ketch
    ketch Member Posts: 157
    edited November 2014

    Just back from Charleston, saw Dr. Baron's new PA (he was overbooked) and had an ultrasound. I'd not had a check-up since my MX in Jan 12. Insurance is picking up 100% for the rest of the year, so I figured it was time to check out and check up. Met with Dr. K, he agreed that I'd been through enough this year and taking a year off and getting back on my feet good was a good plan. So, we will finish this up in early 2016.

    We stayed at Mainstay Suites. That is where we stayed when I had the emergency surgery in July. They offer a medical rate of $69 for a 1 bedroom studio, $89 for a 2 bedroom. They also have a breakfast each morning. SO this might be a good option for those traveling and staying in the area. Previously, I'd stayed at Wild Dunes after stage 1, thanks to a friend's father who rented me his beachfront condo very cheap. Of course, that was my favorite place to stay and we stayed for 3 weeks then. The other surgeries, we rented a 2 bedroom patio home at Sandpiper Retirement. It was fine, but basic. The rate was the same as Mainstay. Mainstay is a Choice hotel and you get points for free night with them. If I'd known that before, I'd have a lot of free nights!! Mainstay is on your left once you get off Ravenel bridge. It is not as upscale as the Residence Inn or Homewood (granite countertops vs Formica & that sort), but it was very nice & clean, plus half the price! The set up & layout is the same as Residence Inn. The staff was really great to us in June when this was an unplanned trip; they were accommodating this time, as well. I've not seen this place mentioned much when discussing places to stay, but others might want to check it out when the need arises.

    I do not plan to go to Charleston for 14 more months....gonna stay out of that place for a while!!


  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2014
    Ketch,

    Glad to hear you are moving along with healing and that you are good with taking a year off. I had an appointment with Dr Baron this Tuesday but the reminder call said appt with PA. Catie did not get to see him either last week. Did you have ultrasound scheduled prior or did you have right after seeing PA?


    Thanks very much for the hotel info. That is a great price and good to know for those traveling to CHS.
    I paid $63 at Comfort Suites-IOP, but just talked to manager by chance last week and the rates have gone up to $89 since the renovation.


    Now that I'm living here, It seems funny to leave my office to drive to appt with Dr K, and other EC docs, and only have to drive three miles down Mathis Ferry in five mins. I made a lot of looong 11 hour drives in the past two years.


    I still have plenty of miles and lodging this year to write off on taxes and track every penny spent on this BC journey. Can't wait to be done!
  • scary
    scary Member Posts: 213
    edited November 2014

    Ketch, I have the points card for them, so i will look into staying there in the future.  i'm sure it will be nicer than econolodge, lol.

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2014

    Ketch, it was a completely different experience going to CHS and mostly enjoying the conversation of other survivors while having Drs appointments as check ups! Hope you will be up to make the next gathering of the Flappers next fall! We each gain so much from each other, even post surgery!

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2014
    Ashira,

    You must be busy getting ready for your next stage of surgery on Friday. Wishing you safe travels and no snow!

    Are we still on for 11:45 on Thursday at Burton's? Hope it works out. I can get there at 11:30 to get a table. I have to be back to office at 1:00.

    I will PM my phone num again.
  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2014

    Ashira, wishing you a speedy recovery from a successful surgery!


  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2014
    Amoc1973,

    Please let me know if you need any more info about my LNT. Next month will be two years since my lymph node transfer with Dr. Kline. Wonderful feeling to be LE free.

    You may want to PM Maxine58 and Mags20487 as they have also had LNT (w Dr. Massey).

    Please let me know if I can help you out when you are in town. I'm a local now, but still a tourist and discovering all the great places to see, dine, and stay. Marty is my go to person, as well as Gail, Dr. Kline's long time office manager.

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2014
    Catie2013,

    Would you be able to send me photos taken by Sewaneegirl? My pictures are really dark because I don't have flash on my old cell phone. Hopefully next year's reunion I will have an upgrade!

    I vote for a weekend in mid-October! 😊🌴🐚🌅💗
    Still warm and before daylight savings ends.
  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2014
    Went to Victoria Secret for a little self torture. I think Genie-Bra still my best friend for a while.

    Was much better this time trying on real bras than when I went six months ago. So there is hope. 😊.
  • lbrewer
    lbrewer Member Posts: 766
    edited November 2014

    happy thanksgiving all! Spending it with my new grandson. All 6lb 15.5 oz of him!

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2014

    Lbrewer, Congrats on your new bundle of JOY!!!!

    Pinkheart, thought I sent them to you? Will send again this week, have kidlets here for the week to help me get ready for Christmas

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited November 2014

    Happy Thanksgiving all! So thankful to have 'met' you all but hate the reason!!!!!!!!!

  • brca35
    brca35 Member Posts: 68
    edited November 2014

    Hi all, It's been a while since I've been here. My BM and DIEP was July 16. I've been in and out of the hospital most of November. I've had high liver and pancreatic enzymes with lots of extreme pain. After finally seeing a GI specialist, they ruled out pancreatitis, but think it's a sphincter of oddi dysfunction. I'm having and ERCP on Monday to hopefully correct this. The will go in with a tube a cut the small muscle leading out of the pancreas. Very precise procedure that can lead to acute pancreatitis if done incorrectly or if they nick the pancreas. Dr thinks we need to do this and I agree, I haven't had a meal since Nov 8 due to pain with eating, been in a clear liquid diet and have lost 15 pound since Nov 1. What's worse.... My stage 2 is scheduled for December 12!!!! Plane tickets bought, hotel booked. I can't have my surgery unless liver enzymes come down. Please say a prayer that this ERCP works. I would be so devastated to cancel Stage 2. Incidentally, they found a spot on my lung in the mri they did for my GI tract. Sigh.... Hopefully not another carcinoid tumor (had one in my colon in 09)

    Tamiami, I noticed you mentioned getting drains out before leaving Charleston. I had Craigie not Kline, but he was adamant about keeping the hip drains in for 4 weeks. Breast drains came out after 2 weeks. I hope that helps, I would ask directly - they are great about answering questions. :-)

    I hope ya'll had a good Thanksgiving.

  • philomene
    philomene Member Posts: 45
    edited November 2014

    Eesh, BRCA35, it just never ends, does it? Sending you good thoughts.

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited November 2014
    Brca35,

    Thanks for sharing with us about your unfortunate setback. I will pray hard for you to have better levels and that the spot is not concerning. If you need any help while in Charleston please PM me. Sending you a boatload of strength and prayers!
  • Tamiami
    Tamiami Member Posts: 396
    edited December 2014

    Braca35 ~ Hoping this all gets resolved in time for your stage 2! Thanks for the drain info...I'll just keep my fingers x'd for the drains to be ready before I leave and if they're not then I'll figure it out.

  • brca35
    brca35 Member Posts: 68
    edited December 2014

    Thank you Tamiami, Pinkheart and Philomene! I had my ERCP and I'm home. No complication of pancreatitis. My high enzymes are coming down so I think I'll be able to go through with stage 2. However, I'm extremely week and just not in overall good health from this GI disturbance. I'm super sore from the ERCP, I need to snap out of this fast and muster up the strength for this stage 2 surgery 8 days away!!!

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited December 2014
    Brca35,

    What is your surgery date with Dr. Craigie?

    Hope you have time before surgery to enjoy holiday events and scenery in Charleston. So beautiful and helped me to relax more before past surgeries. Make sure to email or call Gail for ideas on events, restaurants, etc. Smooth travels!
  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited December 2014

    Hi,everyone.Thank you for your kind words,they really do help me more than I can say.So I almost passed out and was taken to ER..again..this time by ambulance..with shortness of breath,chest pain,nausea....they kept me overnight to monitor my heart.The doctor I saw that evening assured me I would not be sent home until they had some answers..the doctor I saw the next day told me I was depressed and needed to get out in the fresh air and exercise..........I asked him if the depression was causing the numbness in my feet...he threw up his hands and left...so I was once again sent home....I saw my primary doctor...now I love this doctor,but despite my telling him I felt horrid in the morning but as I forced myself to eat through the day I felt somewhat better in the evening....he too insisted it was depression and wanted me to sign myself into the psych hospital.........my husband backed me up that this was nutrition(or lack of) and I made an appointment to see a nutritionist..not one doctor ever suggested this,even when I told them I was barely eating...I saw the nutritionist the day before Thanksgiving and I was so thankful that I saw her....she said I was slowly starving to death from lack of fat and protein and that was at the root of the depression(I always drink skim milk,no fat yogurt,etc)......plus she said no matter what the blood tests showed( I was a little low on RBC and my cells were enlarged,but not technically anemic) she felt I was also deficient in iron,all the B Vitamins and magnesium.......and because of my loss of taste,zinc.....I have not been sleeping and she said that is also from the protein and fat deficiency.....my goal is get up to 80 grams of protein,I am almost to 60....because of the muscle loss I will be weak for quite a while....but finally feel I am on the road to recovery..last night I took zinc,B6 and magnesium and for the first time in months slept well...through all this I had little pain from the surgery,but now I am,since I am moving around and using muscles.....Davy,I was never constipated! Mainly because I was existing on applesauce and mashed potatoes..and those were the days I was eating anything solid..LAstar...I took lots of probiotics through this and I know they helped,my issues were with my upper GI.....pain and heartburn..which I never have..but the nausea was the worst..it is still there off and on....any of you with upcoming surgery...BE SURE AND EAT PROTEIN during recovery.....when this hit,I was still not eating as much as usual.....TAKE probiotics before you start the antibiotics and for a while after....listen to your body.

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited December 2014
    Gointocarolina,

    So glad to see you posting! Sounds like you are on your way back to good health. Dr. Kline referred me to an internist who is double board certified as well as ABIHM certified. Holistic medicine. I am on magnesium and turmeric now along with my Rx meds. She is an awesome doc that I'm so happy to have as my primary.
    Positive vibes coming your way. Take your time. Good times will come again.
  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited December 2014
    Moderators,

    When I post it no longer displays my returns for new paragraphs.

    Thanks!!
  • LAstar
    LAstar Member Posts: 1,574
    edited December 2014

    Whew, GTC -- what a ride! I'm so glad to hear that you have found someone that will listen and help. I hate to generalize but ...eh! ... MEN! (throws up hands and leaves)

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