And It's About Time There Was Some Support For Cushing's!
I have not been diagnosed yet but just went through my CT scan 2 days ago. I hope to hear from the endo sometime next week with results. So far I have undergone the thyroid test, 24 hour urine collection, dexamethesone pill with 24 urine test, adrenal function 6 day test, and the CT scan.
I am so thankful to my half sister for mentioning to my mom that my moonface was a symptom of kidney problems. She used to work for the kidney foundation so she was the only one that was concerned about my change in appearance. Thank goodness she said something!
Right away I looked on the internet and typed in "cortisol". Immediately I was directed to websites on "Cushings Syndrome". I printed out lots of research including the testing and treatment so I was well informed when I went to the endocrinologist a few weeks ago. She will not diagnose me yet so it's been a tough couple of months.
All of this medical testing began in the beginning of September (2004) but I have noticed symptoms, especially in my face since last September 2003. I wonder how long I've had this. But I am grateful that I have found out and the docs are doing something about it. I just want to be normal again, and I look forward to being with my family again in Hawaii in a few months.
Hopefully I can continue my treatment there. This is all so new to me and very scary. Please anyone, feel free to email me We can all get through this.
My Endocrinologist called me Monday to tell me that yes I do have Cushing's Disease. They have found the excess cortisol production in the adrenal glands and there is no need for me to do a MRI. The next treatment is surgery. So she's been waiting all week for the CT scan results and hopefully will call me by today to set up the surgery.
Hopefully I can continue my treatment in Hawaii. This is all so new to me and very scary. Please anyone, feel free to email me We can all get through this.
I have been diagnosed with Cushing's Disease and await a surgery date. They found the tumor in my right adrenal gland, measuring 2.5 by 1.7 centimeters. Hopefully my Endo will call tomorrow.
My endo called today and said I need surgery on my right adrenal gland. The surgery doc is on vacation until the end of the month and then he will call me. So looks like the surgery will be sometime mid/end December...hopefully around the time my mom has her winterbreak from work...so she can visit me for 10 days!
Oh the surgery doc just called and I have a consultation scheduled for Dec 1st. We'll see how that goes.
YAY I met with the surgeon and have a tentative adrenal surgery date for Dec 20, 2004. My mother will be flying here from Hawaii to be with me.
My surgeon has my surgery scheduled for Dec 20 around 12 p.m. He says I will be at the most 2 days in the hospital and the surgery will be laproscopic. They are removing my right adrenal gland and I will have a 3-4 week recovery period.
My mom flys in from Hawaii on Dec 16- Jan 1st! YAY Then my Endo wants me to call her on Jan 3rd to start my hormone treatment. She will give me hormones one hour prior to surgery too to get my left adrenal gland to start working. So that's the latest. I have my pre-op apt next Wednesday.
Keep me in your prayers!
I am home recovering from the surgery I just had on Monday December 20th. I stayed for two nights in the hospital with my dear husband by my side, and was ready to go home wednesday. It feels nice to be pampered and see all the cards and flowers from the friends. The surgery was more complicated than we thought. They couldn't do it laproscopically. My liver was stuck to my adrenal glands so the surgeons did an open incision and I have a 8 inch incision on my right side. I know I was in great hands and they supported my decision as a Jehovah's Witness to accept no blood transfusions. What a wonderful team they were! And what a wonderful site this is!
I'll keep an update on my recovery. Glad to have this tumor removed!
Road To Recovery~
Wow I can't believe it's been a week since the surgery. I'm feeling ok today but have had to take each day as they come...with all the effects of the hormones and prescriptions. But man I have never watched so many movies! hehe.
Well I wanted to post my day by day experiences online so here goes:
Day 1 Monday Dec 20, 2004 Surgery Date
At hospital at 6 a.m. Check into admitting dept. Say goodbyes! Change into gown. Nurse check. Anest doc talked about how this is gonna be no hawaii paradise vacation. Talked about moving to Hawaii! Discuss lapro procedure..no blood transfusions. After surgery extreme pain. Heavy anesthetics. Had to do open incision or bleed to death!! Big 8 inch scar on right side. Hubby and mom come in hospital room!! YAY. Say I'm ghostly white. Endo doc comes by. Me out of it. Blood pressure every 2 hrs all night. A cup of water never tasted so good...yummy. Hubby stays with me!
Day 2 Tuesday Dec 21, 2004
Brian stayed overnight. Mom comes. Hungry! Able to drink milk and eat alittle, then oh no, nauseas feeling. Catheter removed. Want me to walk! WHAT!! The pain...walk with mom and hubby. Friend visits with flowers! So sweet. Hubby wants to go to mall. Mom with me. Hubby brings back teddy bear, video games, and my fav mint candy, and a little dish of pickles! I love him so much!!! Nurse worried about urine infection. Checking urine amount...I'm fine. YAY. Brian stays overnight.
Day 3 Wednesday Dec 22, 2004
I can go home! Discharged from room by 11am after breakfast and nauseas medicine given. Dear hubby goes to pharmacy to get all my presciptions. All docs stop by and say I look good and will be fine. Wheelchaired to car. Home sweet home! Nice friend stops by. Lay down. Sponge bath by hubby. Cuddle watching "Two brothers" movie with mom and Brian.
Day 4 Thursday Dec 23, 2004
Day at home- Visitors come over. Cards and flowers! So sweet they are. Pajamas from friend. Scary headache. Crying in hubby's arms ): Not feeling well. Lay down. Need rest. In-laws come home from Hawaii. Can't sleep all night. Read till morning.
Day 5 Friday Dec 24, 2004
Day at home- Mom gets movies at Blockbuster. Friends visit with flowers and hot chocolate packets! Knows I love hot chocolate. Watch movies.
Day 6 Saturday Dec 25, 2004
Dear hubby at home with me! Store closed! YAY!! Lounge around day. Play Sonic video games. Happy Anniversary 2 yrs 7 months! Nice family dinner. Slept well.
Day 7 Sunday Dec 26, 2004
Sleep in. Lounge around. Get to listen to meeting on phone while cuddling with hubby. Wonderful talk and study. Friends stop by with dinner tray I can borrow. Watch "I-Robot" movie in family room on comfy couch. Slept well.
Day 8 Monday Dec 27, 2004
It's been a week since the surgery! Wow time flies. Time to change hormone dosage to 2 pills twice a day. Slowly tapering hormones to don't have adrenal crisis. Left adrenal still not working. Dear hubby's day off! YAY. Watch funny movie "Around World in 80 Days". Hurts to laugh! My BM from Massachusettes who just moves here stops by. Planning her Sept wedding! Bride and cake mags. Watch sad movie "Message in a Bottle". Lounge around. Feeling good. Walking around. Slept all through the night! YAY!
Day 9 Tuesday Dec 28, 2004
Today feeling ok. Nice pancake breakfast. Mom at a massage right now. Me able to write diary entry online.
Plans for rest of week:
Wednesday- Lounge around
Thursday- Chinese Lunch with nice friend..mmm yummy, will feel GREAT to get out of the house
Friday- maybe see "Phantom Of the Opera" at night with hubby, mom and friend
Saturday- Mom flys back to Hawaii in the morn...): But she might come back if I need her to!
Ok I better lay down. Take care girls and I'll keep this journal updated as I continue battling this disease and recovering. Thanks for all your prayers and loving words. You don't know how much they touch my heart!
Aloha I wanted to update this bio with my latest condition. I am now 30 lbs lighter! Also in about 3 weeks I should be getting off my hormones! Also I am feeling a lot better emotionally and of course physically. For all those fellow cushes out there, there is an end to all the suffering. Just keep hoping and don't give up.
And if anyone wants to email me for support or just to chat at firstname.lastname@example.org Also check out my pics on my website at http://boards.weddingchannel.com/thread.jspa?forumID=219&threadID=490590
YAY! Thank you God, now 9 months post op and I am off my steriod replacements! I went in last monday and my Endo said to stop taking my meds. I have a check up in a month. And I am down to 152 lbs, from 186 after surgery. I feel GREAT! Email me if you want to chat. I understand what you did or are going through.
I wanted to come in and share my good news!
YAY! I went in for my monthly check up, after not taking my replacement steriods for a month. The results were at 20mg!! We were shooting at least for 18mg so that i could stay off the meds. The doctors were amazed at my results! It measured 12mg in July, 16mg in August, 15mg in September, and now 20mg in October. That means I am no longer on my medication, and NO MORE monthly checkups! To think they say in 5 months, if I still am med-free, I will be on my road to recovery and then be CURED! YAY. I'm so amazed that it's all over!
And I lost more weight and lost 7 lbs, which makes me at 145 lbs now. And I feel GREAT!
I hope my story and my success shows others out there that there is a normal life after this condition. (:
I'm CURED!!!! This month makes 6 months since I have been steriod replacement free! And I feel GREAT! I have lost all of the 50 lbs that I had gained, and I feel totally normal again. There is a future of a normal life again for me and everyone else that is suffering! Email me if you want to chat.
After surgery Dec 2004