And It's About Time There Was Some Support For Cushing's!
I have just been diagnosed with Cushing's. I have had the suppression test and I go today (January 7, 2003) for the results and what is going to happen next.
My PM level is 655.
Wednesday, January 15, 2003: Waiting for a date on CAT Scans!
Tuesday, April 29, 2003: Went to Winnipeg, MB for SC Scans on April 17th, 2003. I am awaiting the results. Feeling ok. Water retention is a big thing for me right now. I will keep you informed.
Friday, May 9, 2003: I had CT Scans on April 17th, 2003. The results came back. I have a tumor on my right adrenal gland. 3cm x 3cm, benign. Yahooo! We are searching for a surgeon, and waiting for a MRI appointment. Manitoba Health is such a wonderful system!!!!
Monday, September 8, 2003: I met with my surgeon, Dr. Hugh Taylor, St. Boniface Hospital, Winnipeg, MB, on Friday Sept. 5th. I will find out a date this week for the removal of the right adrenal gland. Should be sometime around Thanksgiving. I will keep you posted on a surgery date.
Updated, September 23, 2003: I have a surgery date!....October 7th, 2003 St. Boniface Hospital, Winnipeg, MB....Dr. Hugh Taylor
Updated, November 8, 2003:
It has been a month now since my right adrenal gland/tumor surgery. October 7th, 2003. Dr. Hugh Taylor, St. Boniface Hospital, Winnipeg.
It went alright. They scrapped my liver on the way out, but all went well. Until I got home. The Saturday before we left to go to the city, I fell, which required 20 stitches in my left knee...these got infected while I was at home. I haven't been able to eat and keep the meal since I came home. I have now broken out in a rash back, chest and hands...we do not know what this is from, but the itching is driving me crazy.
I am going to attempt to go back to work Monday, October 10th.
I go back to the city Nov 20, to visit Dr. Solomon and we will look at the cotizone and start to tapper them off I hope....I hope this makes sense to everyone...lol
Updated, December 29, 2003: Here is the last health update for the year and hopefully for a very, very long time if ever again. For those who do really know what has been happening in our house hold I will start from the last update. Be patient, it is long and drawn out, but in the end you may understand what has happened.
October 4th I fell. This little mishap required 20 stitched to put my knee back together. No broken bones, but 8 stitches in the inside and 12 outside.
October 7th, I had my right adrenal gland and tumor removed at the St. Boniface Hospital. The Operation went well except they scrapped my liver on the way out. I was up and around the very next day. I had a surprise visitor when I arrived in the city. My brother, Curt. After telling me he couldn’t get the time off. There he was standing outside our car when we arrived in Winnipeg. I was in tears. It wasn’t the best circumstances for us all to be together, but it was nice.
October 10th, I flew home while the girls and Nipper drove home. I was still feeling hunky. Mom prepared Thanksgiving supper at our house.
The second week I was home, I lowered my dosage of cortisol as directed. I was very sleepy. I was sleeping up to 15-16 hours a day.
Around October 20th, I started to feel pretty sick. I couldn’t keep anything down. I had broken out in a rash. After seeing my family doctor and receiving gravol and being told "you have dry skin", life continued as "Mrs. Pukey". I also had two stitches infected in my knee. I was given antibiotics. The doctor never checked to see if I really had an infection before giving me more pills.
November 13th, I couldn’t handle the dry heaves and vomiting anymore. I hadn’t been able to keep anything since approximately October 20th, 2003. I was living on tea, water and 7-up. It felt like there was ice going through my veins. I was giving up hope. We went to the emergency room after talking to Dr. Taylor (my surgeon). I was given more gravol (which didn’t make sense, I was throwing everything up) and scheduled for an ultra sound the next morning. They wouldn’t give me IV gravol nor fluids. Nor would they call Dr. Kostyk. I went for my ultra sound the next morning, I have fluid between my liver and kidney, which is ‘normal’ after surgery I was told. They also refused to consult with my doctor in Winnipeg and wanted me to wait until I went to my scheduled appointment in Winnipeg on November 20th. We were at wits end and I was very irritated that no one wanted to help. I was then offered to take medication that is offered to chemo therapy patients for nausea. At this point, we were willing to try anything. Off to the drug store we went, 6 pills for $127.00...well if they work, lets go for it and wait for my appointment in Winnipeg. Never again, I took one...they work..yes...but when I got up I didn’t feel real. I was walking around in someone else’s body, it was the worst feeling I have ever had. I couldn’t talk, my heart was racing, I couldn’t tell anyone how I felt, my mind was going but I couldn’t tell anyone.
My mom and dad came out to the house on November 15th, we got on the phone with Dr. Taylor (Wpg) and booked flights. He would meet us at the Emergency room, St. Boniface, on Sunday, November 16th. He was amazed that they didn’t take me seriously and how sick I was. He wasn’t messing around.
It just wasn’t our day, Lindsay (my baby, 9yrs old) was playing outside with our pup Dacari, the pup ran out on the road and got run over and then the next door neighbors’ dog bit Lindsay. Her turn at the hospital. No stitches, antibiotics and a shot. How my husband was keeping it together, I will never know.
After helping me hold my head up all day and get my house in order, mom and dad, got myself, Nipper and Meagan on the plane. Lindsay stayed with them. Along with Dacari.
We arrived in Winnipeg and went straight to the Emergency Room. I was admitted in there for the night. They upped my dosage of cortisol and gave me at least three bags of fluids.
We stayed the week in the city, as I had an appointment with Dr. Solomon, my endocrinologist on November 20th. This is the scary part....from the day of my operation to November 20th, I had lost 46 lbs. I wanted to loose weight, but not this way!!! I was in a what they call "Adrenal Crisis" or "Acute Adrenal Insufficiency". My next step was a coma. I need to get a medical alert bracelet and carry a letter from my doctor, so the bimbos here at the hospital know what to do with me again if it ever happens. She was great though, she explained everything to us and how everything was going to work from now on. She tripled my dosage of cortisol and gave us exact dates on when and how to cut back on the steroids. I have lowered my dosage once since we came back with no side effects. I feel ok. I get pooped out quick. I started work on Monday. I go for as long as I can.
Christmas is a different story. We put up the tree on Saturday, so that is a start. But I’m looking forward to being together and being thankful that I can see another Christmas with my family. Curt (my only brother) will be home around the 21st of December, and I’m looking forward to seeing him again ( I was spoiled this year, I will have seen him 3 times LOL).
I don’t know what I would have done without my husband, kids, family and friends. This year I have had a lot to be thankful for!
December 28th, 2003
We went to see Dr. Kostyk. He was not impressed with the treatment I had received at the hospital, nor that they refused to call him. It was a local call and wouldn’t have hurt. He has recommended that I write a letter of complaint. We were quite surprised as this is not like one doctor to talk against another. He was quite concerned and recommended that if and should I have to go to the hospital during the holidays, that I demand they call him and I don’t leave the hospital until I hear his voice. He was troubled on how I was dealt with and sent home with them knowing I had such a rare and serious condition.
So far, I have dropped my cortisol twice and have had no side effects. The only trouble is, in which no one has answers to, is the "Buffalo Hump" burns continually. It feels like there is a match in there.
I know this is long and drawn out, but it explains what has been happening.
Carla
