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missaf

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Everything posted by missaf

  1. had a great time with NancyJ tonight!!

  2. gets to meet NancyJ next week!

    1. saberlowe

      saberlowe

      You girls are gonna have some crazy Cushie fun!

    2. NancyJ

      NancyJ

      Yup! Come join us!

    3. saberlowe

      saberlowe

      Sure wish I could!

  3. My MD Anderson surgery tips 1) After all your records are with IMCC, you'll get a number to call to schedule surgery. They will give you all the details they think you need (isn't much). Be sure to get your medical record number, you'll need to memorize it. Ask the scheduler for a Wednesday surgery date if possible. You'll get to fly in on Monday night, Marathon Day on Tuesday, surgery Wednesday, and you can be home by Sunday if everything goes perfect. 2) Call MD Anderson Travel and check their ticket prices once you have your Medical Record number. They can get you a ticket that won't charge for changes if you need to change your flight for whatever reason. This saved me a heap of money because I needed to be inpatient 10 days instead of 4. 3) The travel people can also book you a hotel, or you can do the research on your own. You'll need at least two nights before surgery, a place for your guests to stay while you're in (the lowest number of days in patient is 4 days), and I recommend at least a night or two in town to make sure everything is okay before you fly home. Those extra days post-op make flying home SO much easier. Extended stays are nice, but you incur more cab fare. The Rotary House is amazing and comfortable. 4) Have all your questions for IMCC (and your family, too) written down so you don't forget. He'll spend as much time as you need. We call it Marathon pre-op day because you'll have lots of appointments all in a row. Use this website to help you find your way around. It works well! http://access.mdanderson.org/home/?CFID=41...FTOKEN=16468369 You can also access your medical records online with my.mdanderson.org. 5) Bring all your meds with you. Sometimes they don't have the ones we need as Cushies, and they'll tap into yours and replace them when they get the meds in stock. This includes your take home meds, emergency kit, etc... 6) If an MD Anderson Endo comes into your room, tell your family, the floor nurses, the residents, EVERYONE that you're a Cushing's patient and only IMCC will be treating your endo needs after surgery. I can't stress that enough. Ask Paula what you should do if an Endo comes in to treat you. 7) Don't overpack. You won't need much. Travel size toiletries for your first shower post-op (I wait until the balloons are out, much more relief that way), PJs to change into after your first shower, iPod to drown out hospital noise, etc.. I bring candy and put it in a dish in my room -- the nurses and doctors come in to visit just to get candy! A light ice pack will feel good on your face or behind your neck. 8) Take advantage of all the patient services, beauty salon, massages for you and your family, library, etc... They are WONDERFUL 9) They do screw your head to the table in 3 places. It sounds kinda archaic, but it's not bad. Just remember you're going to wake up with 3 sore spots on your head. 10) the pain is going to be different than other surgeries, but ask for pain meds if you need them. I needed morphine every 2.5 hours the first night, then every 4 hours during the next day. Vicodin worked after that, but it tends to bind you up more often. Start Colace tabs before you go to help with stool softening, and if you haven't had a BM within 2 days of surgery, ask them for stronger stuff to help you. You'll want a nice soft BM for a while! 11) On Day 2 they with hold your afternoon cortisol to check your blood on day 3. Ask for Phenergan to help you sleep (and gets rid of nausea), or Zofran to help with nausea. I projectile vomited across the room and it wasn't pretty! 12) The plane ride home is a little rough sometimes. A Xanax will help you relax (take it after you get on the plane), and ask for some Zofran in case you get queasy on the plane. 13) Use wheelchairs at Houston airport! Just request a wheelchair and they'll wheel you everywhere you need to go. I did this both times and it was a life saver both times. It is much easier on your family too. Wear your compression stockings on the plane -- the ones they put on your legs in the hospital. 14) the best rule with family: You need them more after surgery than you do during. The family waiting room is comfie with computers and nice soft chairs, so be sure your family is getting rest. That first day you need an advocate, a gofer, and someone to make sure you get your pain meds. They won't get much sleep in your room the first two nights, so shifts are good so they can go back to the hotel and get some real sleep. 15) Family gofers: chapstick, water, ice, foot rubs, cool wash cloths, etc... Let them do for you to make you feel more rested and comfortable. With the balloons in your nose the chapstick is a lifesaver. I prefer the Bigelow lip balm (From bath and body works) because it lasts forever. ....
  4. One of the bestest ladies on the planet. So glad to know you!

  5. It was so wonderful to meet you in Vegas, I can't wait for an excuse to get together again! Love ya!

  6. So glad to have you as a surgery buddy! You're an amazing and strong woman, and I'm glad to have met you :)

  7. I've been coming off of Dexamethasone all week. It has not been fun at all. I now understand what lows truly feel like and if it happens post-op, I'm going for the hydro! I never threw up, but I came close. Lots of sleep helped, but when I woke up and did stuff, it came right back, so back to bed I went! My menstrual cycles are always screwed up. The best they were was right after I had my son, now they're back to normal-weirdness. My cycle this month was 29 days. Last month it was 24, the month before it was 23. ODD. So now I'm PMSing on top of the low from Dex. Talk about irritable! I am struggling to have patience with everyone in my life right now. With the people who want to help, with the people who can't seem to understand it's not a quick recovery, with the people who want to make my life better. My dad announced he wants to buy us a house to move into. I had to explain to him that would be lovely, but I would either have to move in NOW with the essentials and do the rest in 9 months or so, or we'd have to wait until later. I understand the market is good and he's got his lender ready to go, but just be aware of the fact moving is stressful and I CAN'T be stressed out after surgery!! So I'm feeling the home buying rush. I want it in town, I don't want to yank up my son out of his support system. Not when Mom's flying far away for brain surgery. I want something cozy, not too big to handle. He wants acres of fruit tress and chickens. I'm starting to smell the "It isn't gonna work" routine coming soon. It sure would be nice to live in a place where I'm not stressing about the people beneath me blaring their music. I can't tell them to stop or face brutal retaliation, and I'm already feeling an AI episode coming on when I try and convince myself to call the cops to get them to be civil. But in AI your head pounds and your hurt all over and you feel icky -- Rap and Hip hop at 150 decibels, under your feet? Not good. I wish I could live in a place I could let my son play. With 3 guys from Megan's Law in my apartment complex living here -- forget it. He doesn't own a bike because I don't want him snatched off it! Oh I need to move, I just wish it wasn't all right now! I'm totally freaked out about this. I'm mostly packed and reayd to go now anyway, so let's please make it happen and just get it over with!
  8. Brand new stretch marks yesterday and today. *sigh* The older stretch marks have been red the past few days, the new ones are purple. My pulse is pounding in my ears. The only things that hurt are my knee and my hump. I can't get these tests in soon enough. I've been wondering a lot about MDA and how I'm going to do that alone. Does the Rotary House have a financial aid program?
  9. missaf

    Sleepless nights

    Last night was another one of those nights that I got ravenously hungry after eating well all day. I checked my stretch marks (bright red), and my pulse was pounding in my ears very loudly. I was craving carbs like I was addicted to them, and it was most uncontrollable. I couldn't fall asleep until 5am, and I had gotten up at 7am the day before! I felt so wired, even though my body felt exhausted. I pray that these have been highs and my testing will show it! Today, out of nowhere I have a raging yeast infection. The past five months -- that I've been paying attention -- this is the fifth one! They always seem to go away after my period starts -- maybe because the cortisol flood stops?? My hospital won't do my midnight cortisols. It looks like I'm going to have to drive 45 minutes to the nearest one that will do it. Ugh. I am going to go by there today and ask.
  10. missaf

    First Blog!

    I've decided to keep my blog about Cushing's here rather than where I normally keep it. Today I am feeling warm and energetic. I had lots of heart-pounding in my head -- is that hypertension? My hump has ached today, and in turn, my neck aches. I didn't get dizzy when standing today that I noticed, but I did have lots of trouble getting up off the floot. I checked my stretch marks today and they are mean and red, some purple, so started a 24 hour at 8pm. All my salivaries are done, so I'm hoping the first 6 are low to medium, and the last two are sky high *crosses fingers* I'm wondering today if I don't test positive for CD, perhaps the tumor might be causing the hypopit Dr. F thinks I might have? If I feel this high tomorrow, I'm heading to the PCP's office to have her check my blood pressure. This is all so confusing and overwhelming. The closer surgery comes, the more scared I get. I'm a single mom with a dad with advanced heart disease and probable CD himself (He's got ALL the classic S&S!). I have no one that could go with me to MDA, but I want to trust IMCC with my care. UGH! This is the worst part of being single! I don't want to go alone after the last time I was in the hospital and was denied my pain meds and I was in so much pain I couldn't advocate for myself. I'm scared to go without someone on my side after my BFF's mom died of AI and infections. I'm scared of the aftercare without maybe a Visiting nurse or hospice or something. I'm scared of the bills for going to Texas for the hospital hotel! I'm on disability and barely making it as is! One day at a time works for a while, but some days I just have to unload! This worry and concern is killing me! I haven't emailed Dr. F yet -- I'm waiting for all of my Cushing's workup to come back before I do. AHHHHH! Make this roller coaster stop.
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