July 2017
This is a scary post. I am hoping that writing about July will take some of the fear out of it. I am glad that I don't have to live it again. July took a lot of my hope away so it became a big scary monster.
Saturday, July 1, 2017 - We got the mold report back. It showed unhealthy mold in my bedroom and kitchen. It said is was mild and recommended air purifiers for those rooms to rectify the situation.
I took Antar to the Emergency Department for a bad headache.
Monday, July 3, 2017 - This was a terrible day. Antar(my husband) was in the Emergency Department in American Fork. He had a horrible headache. Not just any headache but a scary headache. The medications they were giving him were bringing his heart rate and respiration so low I thought he would die.
I had a PET scan that afternoon so I left my daughter, Kimberly, with her dad and drove to Provo. The PET scan was requested by the pulmonologist that was going to do the bronchoscopy. It was hard to leave Antar but this was important. The PET scan itself wasn't so bad but afterwards they did a Chest CT with contrast and we discovered that I was allergic. THAT was not fun. Especially because my father told me that was what killed my uncle a few years ago. The technician pulled me out of the machine and looked at me and ran to get the nurse. She realized something was wrong before I did. They gave me Benadryl. She said I was as red as her car. I was so weak that I couldn't stand. They got me to a bed where I rested. They called a doctor. They called my daughter and asked her to come get me. She said it was the worst day ever. She thought both of her parents were going to die in different hospitals. The doctor said it was a mild allergy and that I would be ok. That was mild?! I don't want to experience anything more severe.
Wednesday, July 5, 2017 - I saw a new neurologist. He referred me for a lumbar puncture to test me for MS. He suggested physical therapy for my migraines. In case you didn't know, neurologists love to talk about migraines. It is their favorite thing to do. He was no help when it came to dysautonomia. So far 3 neurologists and no help for dysautonomia.
I went for another infusion of IV fluids.
I saw the results for my PET scan online. It said I had adenopathy in the lymph nodes up and down my spine and in my liver. I have nodules in my lungs. It said I probably had lymphoma, sarcoidosis or castleman's disease. I also have atelectasis which is because the lymph nodes are taking up space that my lungs should be using to inflate.
Friday, July 7, 2017 - I had my lumbar puncture. I was supposed to go home and lie down for 24 hours. It didn't work out that way.
That afternoon I took Antar to a neurologist to follow up for his ER visit. He sent us back to the ER for a blood patch. He said there was a spinal fluid leak. While at the ER they said his Ddimer came back above 19000 so he was admitted to the hospital in Provo and put on a helparin IV.
Saturday, July 8, 2017 - We met our favorite doctor ever. A neurologist with an open mind that seemed to understand things. They did an angiogram and did not see a clot. They wanted to do another lumbar puncture to look for infection.
Sunday, July 9, 2017 - I had a horrible migraine
They did a lumbar puncture on Antar. They were surprised to find the pressure was not low. That indicated no spinal fluid leak. He had inflammation of the meninges. Possible Sarcoidosis. Are you freaking kidding me?! We discussed follow up. Increase amitriptyline and add indomethacin. We went home.
Monday, July 10, 2017 - It is believed that I have a headache from a spinal fluid leak because I didn't rest correctly after the puncture.
We made an appointment for Antar with the new neurologist.
Tuesday, July 11, 2017 - The pulmonologist called about the PET scan. He said I have Lymphoma or Sarcoidosis. He said that he wasn't going to do the bronchoscopy. He was referring me to a cardiothoracic surgeon to do a mediastinoscopy.
The cardiothoracic surgeon's office called me to schedule an appointment.
Wednesday, July 12, 2017 - I called to schedule a blood patch because I still had a headache.
Thursday, July 13, 2017 - I went in for the blood patch but they were going to give me contrast. I didn't do it.
I went to the ENT. My staph infection was worse than it was a month ago. More antibiotics. I guess I was mistaken. This is when we went to the topical antibiotic.
Friday, July 14, 2017 - I saw my primary doctor and had her sign the form allowing me to return to work.
I worked almost half a day. I started my antibiotic.
Monday, July 17, 2017 - I went to see the cardiothoracic surgeon to schedule the surgery. We discussed the PET scan and he answered my questions.
Tuesday, July 18, 2017 - we went to Idaho because my son graduated from college!!!! Yay Alex!!! He now has a BS in Nursing.
Wednesday, July 19, 2017 - We took Antar to see the new neurologist. He is awesome.
Thursday, July 20, 2017 - Mediastinoscopy. I hate surgery. The doctor said it looks like Sarcoidosis.
Saturday & Sunday, July 22 - 23, 2017 - I was having unusual constipation. No relief. Intense pain. It felt like menstruation. I almost went to Emergency but had a panic attack and went home.
Monday, July 24, 2017 - I went to Emergency because the pain was so intense. CT showed thickened colon, no diverticulosis. Sent home with Oxycodone and follow up with colonoscopy.
Tuesday, July 25, 2017 - I went to work. (determination!) No bowel movement. Lots of pain meds. Antar drove.
Wednesday, July 26, 2017 - I went to work. My throat hurt.
The surgeon called to tell me that I definitely have Sarcoidosis. He said the pain in my throat is because he biopsied the lymph nodes in my neck as well as my chest.
I got a colonoscopy scheduled for Friday.
Thursday, July 27, 2017 - I worked half of the day.
I saw a nephrologist. She didn't approve of my diet and wanted me to make a lot of changes. She said nothing but water to drink for a month and ordered lots of tests.
I went with Antar and we both saw the awesome neurologist. For Antar he put steroid injections in his neck and ordered a PET scan. His chest CT was normal. For me he agreed that Sarcoidosis is causing all of my problems. He explained that my neuropathy is peripheral where Antar's problems are in his central nervous system. He started me on Gabapentin. We discussed steroids and immunosuppressants but we can't use them while I have an infection. He will help me find a Rheumatologist.
Friday, July 28, 2017 - I didn't make it to work. I had the colonoscopy. The doctor said I had ischemic colitis which is a stroke in my bowel. He said it was minor and healing so didn't need any follow up. The colon cleanse kept going for 24 hours after my colonoscopy. Not by prescription but because my body wouldn't keep anything I ate. It just passed straight through.
Saturday, July 29, 2017 - I started Gabapentin.
Sunday, July 30, 2017 - I was not feeling well. Headache. Itching. Racing heart.
Monday, July 31, 2017 - Heart still racing. Everything is too hard. I went to Emergency. I was dehydrated. They gave me 2 liters of IV fluids. We slept at the time share in Salt Lake City. It is only 5 minutes from work. I wanted to go to work!
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