Posted in Blood, Brain surgery, Cortisol, Cushing, cushings disease, Endocrinologist, ENT, Johns Hopkins, Neurosurgeon, Recovery, Surgery, tumor, Uncategorized

Another account of my hospital visit

While at the hospital, my dad kept track of everything going on! Here’s what he wrote down in his phone:

November 9, 2016 Wednesday

5:15am arrive at hospital and check in.

In pre op. Meds at 7:40am

Moved to operating room at 8:20am

9:30am surgery just started.

10:30am still in surgery. Everything ok.

11am I ate lunch.

No update at 11:30 or 12:30.

12:40 asked and was told they removed tumor and Julie is stable. 

1:20pm doctor came out and said everything went good. Can see in 45 minutes. Need to check her cortisol levels for next couple days.

2:15pm go back and see Jules. 

2:50pm medicine for pain. Throat, head and ears. Nurse did examine, all parts move. Can have more meds at 5pm. Phentinol. A couple blood test. Blood sugar looks normal.

4:15pm more vitals. Blood work for cortisol.

4:35pm code red alarm went off. 

5:30pm more meds

6pm we left. Kevin here.
November 10, 2016 Thursday

9am got to hospital. During night Julie had insepidis diabetes and had to get a shot in her stomach. She said they kept coming in all night checking her and drawing blood. Also giving her meds – potassium and pain. I asked about cortisol levels and they hadn’t gotten results.

10am more rest and meds. Kathy and Mary here.

10:45 finally got cortisol results and said it was a 10. Supposed to be below a 28, which we thought was good.

11:15am came in and said the doctors want it below 5. Ordered some food but Julie not hungry.

12:15 sanitize room. Still no word from docs about cortisol or insepidus. Still drinking lots of water. Did eat container of mango Italian ice. Lots of stomach gas.

1:30pm Kevin went home. He got $20 In change from parking machine. I went to lunch. Julie got another shot in stomach for insepidus. 

4:30pm everything still about the same. Pain in stomach, head and eyes. Still won’t eat. 

5pm more meds and blood test. Julie tried to poop but couldn’t. But did order food. Waiting for that. Kathy and Mary left. Kevin back.

6pm. Still can’t eat. Another endocrinologist came in. No new info. Getting ready for MRI. 

7pm more pain meds and ativan to calm her down for MRI. 

8:52pm Julie back. They said she did good. Results back tomorrow.

9:12pm I left for night.
November 11, 2016 Friday

8:30am back to hospital. Kathy right behind me. Julie doing really good. Last night they switched her from phentinol to oxytocin. Her cortisol dropped from 10 to 5. Now they want her at 2. Did say that tumor was completely removed and pituitary gland looked ok.

10:30am Julie finally ate. More doctors in. Nurse Emily came in and said they need to keep her in icu another day. Cortisol shot up to 9.3. Julie head still hurts. Switched back to phenatol. 

About noon Kevin and I got lunch at subway. Julie wanted a sub. She ate most of it. 

1:30pm Gallia and Ishuii? came in. Said Julie will move upstairs once a room comes available. 

2pm finally pooped and getting cleaned up. Refuses to brush her hair.

2:45pm Kevin left. Nurse gave her dilaudid for her head pain.

3:15pm Julie finally sleeping.

3:45 had to get up to pee. Nurse unattached her from machines. Everything ok.

4:45pm getting ready to move out of icu.

530pm moved out of nccu into private room on 12th floor. Took a little bit to get her settled in. Ate dinner. Getting her appetite back. 

6:45pm gave her some dilaudid. Still has pain in her head. Kathy left.

8:15 more meds and blood drawn. 

8:30pm try to get some sleep.
November 12, 2016 Saturday

9am Kathy here. Restless night. Lots of people in and out. Said she will have to stay another night. I left for a while. Came back about 5. Got Julie dinner. Ate a lot. I left about 8:30pm. Kevin spending the night.
November 13, 2016 Sunday

9am visit Julie. She seems to be doing better. Fingers crossed about leaving today. Another iv for antibiotics. 

10:15am Kathy and Mary here. Nurse said cortisol dropped to 2.8. Waiting for endocrinologist and neurosurgeon to agree on letting her go home.

12noon. Told she could leave. Doing paperwork.

2:15pm left hospital. Picked up all her prescriptions first. $50 co-pay.

Posted in Blood, Brain surgery, Cortisol, Cushing, cushings disease, Endocrinologist, ENT, Johns Hopkins, Neurosurgeon, Recovery, Surgery

Sorry for the delay..

My iPad charger decided to stop working and that’s where it was easiest to post from. So I came up with a better idea for the time being! 

Here’s a graph of my cortisol levels. As you can see, before the tumor was removed they were incredibly high! 

Here are pictures of the bruises I had after surgery. Pretty gross! All healed up now 🙂

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A little Update

Getting a little frustrated…
My surgery is scheduled for November 9th. So almost two months after I met with my neurosurgeon. He told me I had to spend the day at the hospital getting another MRI, CT scan and to meet with the ENT Doctor to make sure I was good for surgery. I also had to schedule an appointment with my primary doctor before that as well. Which I did, meeting with her on the 25th for pre-op. Still waiting to hear back for when I have to get the other tests done, I just don’t want them to push my surgery date back because they haven’t scheduled me for the other tests yet. Since this is just a quick update, I think I’ll make my next blog post explaining all of the tests and results I had to get done before I was officially diagnosed.
On a lighter note, here’s some things that are currently making me happy
the Walking Dead FINALLY comes back on tonight
I bought my cat a Halloween costume that she’s gonna hate me for, but it’s supposed to be here today
The weather is finally getting cooler so I can wear pajama pants without over heating
I found a new cocoa butter lotion that’s actually helping with my stretch marks from Hollywood Beauty
like I said, I’ll post on here soon going over the tests in more detail

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One of my biggest fears is being in a place I can’t get out of. Like being buried alive or trapped in open water. Cushings disease kind of feels like that to me. I feel like I’m trapped in a body that isn’t mine and I can’t get out. I don’t even recognize myself when I look in the mirror. I hate it. All of these gross stretch marks cover my body, my hair is falling out, my face and tummy are getting rounder and new bruises appear almost everyday. At first I noticed myself getting a little weaker, my bike rides went from three miles a day down to one. Then my bike rides turned into about a mile walk and then to a stroll around the neighborhood and now to nothing. Let’s face it, I need to rest after walking up a flight of stairs. I just want to sleep all the time, I could get anywhere from 10-12 hours of sleep and still be tired. It’s never-ending. I have no motivation to do anything, going to the grocery store now is even a task. If I bend over to get something I have to use my hands to push or pull myself up because my legs are just too weak to do it anymore. Kevin has to help me get out of bed everyday because I physically don’t have the strength to pull myself up sometimes. Besides the physical changes, it’s starting to affect me mentally as well. Sometimes I’ll just stare at myself in the mirror and start crying because I literally look nothing like myself. I just feel embarrassed. Going out in public? Forget about it. I dread running into someone I know. I used to love shopping, now I can’t stand it because all of the clothes I want to wear make me feel like a giant elephant. Or should I say buffalo, because I forgot to mention the “buffalo hump” that’s growing between my shoulders. I also had a great memory, now I can’t remember anything. I’ll be talking to someone and then have to ask them if I already talked to them about whatever we were talking about! I’ll start doing something at work and then forget what I went in the back for. It’s frustrating. I just don’t feel like myself, I don’t even remember what feeling normal is like. It’s hard to explain exactly how I feel, I don’t think anyone gets it unless you’re going through the same thing. When people ask how I am and I say “tired” they’re always like oh me too, I know how you feel. I really just want to be like no, you really don’t. Your tired and my tired are two totally different tireds. That’s why I can’t wait until surgery. I’ve been told it takes as long as you’ve had the symptoms to start feeling better after your tumor is removed. So the sooner the better. I just hope the recovery process really isn’t as bad as what I’ve read but I guess I’ll find out soon enough!

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My Diagnosis

I’ve been skinny my entire life. Never passed a size one until about a year and a half ago. I felt like I jumped from a size one to a size seven over night. Don’t get me wrong, I LOVE eating. Especially because I could never gain weight. Everyone said enjoy it now cause it’ll catch up with you eventually. I thought, yeah right…maybe when I’m in my 40s. Wrong. Well, so I thought. Around June 2015 I started noticing my face getting fuller along with my tummy. My boyfriend and I were heading to the beach with my family when I noticed none of my shorts or shirts fit me from the year before. I was almost in tears. Never in my life had I have clothes too small for me. I still had jeans that fit me from my freshmen year of high school, why were clothes that I just bought too small for me now? Over the next few months my face kept getting rounder and rounder and clothes kept getting smaller and smaller. By January I was at 140 lbs. Which is a lot for me considering I’ve never been over 115 lbs my entire life. So I decided to make a change. I went on a hardcore diet. Stopped eating fast food, counted ALL my calories, started walking to work and even went bike riding everyday. I even tried exercising and yoga. I did this for months and still couldn’t lose the weight in my face and stomach. I was getting so frustrated. I was clearly loosing weight in my legs and arms but no where else. I even started getting these nasty stretch marks on my legs. I hated looking in the mirror, and I still do. I felt embarrassed to go out because if I saw anyone I haven’t seen in awhile they literally do a double take because I look nothing like myself.
How I got my diagnosis. My boyfriends aunt is my literal life saver. I can’t believe she figured this out so easily when it takes some doctors years to diagnose. First off, my boyfriend (Kevin) and I have been dating since we were 16. We’re going on 8 years in April, so obviously I’ve known his family for that long as well. We would be called the “Twig Twins” at his family parties because we were both so thin. I think at one point they thought I had an eating disorder, until they actual saw me eat. Anyways, his Aunt Tammy was looking at some Facebook pictures Kevin’s mom (Mrs. Mary) posted recently of me and him and gave her a call. She used to be a nurse and told Mrs. Mary she thought I had Cushings disease because my face just didn’t look normal or atleast how I used to look. Mrs. Mary was afraid to mention it to me at first because she knew how self conscience I was about it. So one day when I was walking in the door from work, she told me about it. Obviously I looked it up and could not believe I had Every. Single. Symptom. I texted my mom about it and said I should make an appointment with my primary Doctor. So on August 10 2016 I went to my doctor (Dr. Bothwell of Johns Hopkins) and she was also concerned once I began explaining all of my symptoms. She then scheduled me for an appointment with endocrinologist, Dr. Wand on August 23. My mom and I drove down to Baltimore to Johns Hopkins hospital and again, I explained all my symptoms and we went over things in much more detail. Dr. Wand agreed that this was a classic case of Cushings disease. To be sure though, I had to do tests. Lots of blood work to test my cortisol levels, a 24 hour urine test and a saliva test. I was also scheduled to have a CT scan done to check my adrenals and a MRI to check my brain. I finally met with my neurosurgeon, Dr. Gallia of Johns Hopkins who told me I had a tumor on my pituitary gland on Sept. 15th. My mom, dad, grandma and boyfriend were all in the office when he told us. He went over everything in great detail about what was going to happen, how I’ll feel and what could go wrong. He also said before I have the surgery he’d have to map out a GPS of my brain so I’d have to get another MRI. I also have to meet with the ENT (ear, nose and throat Doctor) as well to make sure I can have the surgery. After what seemed like forever, I finally have an appointment for surgery. November 9th. There were a lot of scheduling problems because of how busy my doctors are. I’m very thankful for Dr. Gallia. He’s one of the best neurosurgeons in the country. He even has people flying in from different countries to see him! I cannot wait for surgery, I’m not scared of that, even after being told all that could go wrong. I’m more scared of the recovery process and how that’s going to affect me. I’m lucky to have the support of my family, my boyfriend and his family too.
Like I said, this blog is to keep track of my journey with Cushings Disease!

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“Yes, you do have a tumor.”

I would’ve never imagined at 23 years old I’d be sitting in a neurosurgeons office being told I have to have brain surgery. Cushing’s disease sucks and it’s crazy to think that something the size of the tip of my pinky could be so life changing. I mean, I’ve had surgery before but that was to just get my gallbladder removed when I was 18. But brain surgery? That sounds so scary. Every time I have to explain that I have a brain tumor people look at me like I have a death sentence. I don’t think it’s a death sentence, it’s just a very long journey to recovery.

The reason I’m even starting this blog is because reading other people’s blogs about Cushing’s Disease gives me some hope about eventually feeling like my normal self again. I’d actually consider myself one of the lucky ones when I read about how long it takes people to even be diagnosed with this disease. I have my boyfriends aunt to thank for that one, but I’ll get into that a little later. I read that 10-15 people per million a year are diagnosed with this disease, (how’d we get so lucky, right?) so obviously there’s not that many of us. I mean doctors don’t even have a clue what causes the tumor besides that it’s some sort of mutation in your pituitary gland. That’s another reason I’m doing this blog. Us cushies have to stick together to learn as much as we can about this nightmare of a disease and share our stories of how we got through it. My goal is to help at least one other person having to go through this to see that there is a light at the end of the tunnel! Even though I haven’t had my surgery yet or could begin to tell you what it’s like afterwards, I want to document my journey and hopefully hear about others journeys as well. So if you’re reading this please feel free to share or ask any questions you’d like.

Here goes nothin’.