Rebada's Realm

A cozy place to call my own. I've tried blogging on other sites, you know, those "Social Networking" sites, but there is too much other stuff going on.

Friday, July 17, 2009

Dexamethasone Zone Update

This post was published to Rebada's Realm at 11:02:18 AM 7/15/2009

Dexamethasone Zone


 


 

I started taking a synthetic steroid July 14, 2009, Decadron, or Dexamethasone, 40mg/day and will take for 5 days.

  • Day one
    • Took first dose around 9:30 am. About 12 hours after taking the first dose I developed a headache. Not sure if it was from the medicine or my son's cologne. Later in the evening, after I went to bed, I still had the headache and felt somewhat nauseous. Also had difficulty sleeping.
  • Day two
    • Took second dose around 10 am. No noticeable side effects other than the fact that my knees feel better, and I am HUNGY!


     

  • Day Three
    • Took third dose around 9:30/10:00 am. Again, knees feel better, extra hunger, but nothing bad.
    • Late in the day began to notice minor vision disturbances.
  • Day Four
    • Took fourth dose around 10:00 am. Noticed much greater visual disturbances today, even before dosing. Knees and other achy joints feel great! Still got this hunger thing going on! Trying to be good and not eat everything in sight!

Saturday, July 11, 2009

I Have a New Identity


My Medic-Alert bracelet came today. I had it engraved with "ITP" and "Bleeding Disorder". Its ugly, but serves a purpose.

My life with an auto-immune disorder is now beginning to get complicated. I need to have a Fine Needle Aspiration (FNA) biopsy of the lump on my thyroid. I've been having my platelets checked and they are too low for the procedure, so I must take a 5-day course of Decadron prior to the FNAB, and have platelets checked the day before just to be safe.

What a circus! I have other procedures that will need to be done, possibly including partial thyroid-ectomy. I cannot wait to see what kind of circus hoops I have to jump through for that!

Sunday, March 8, 2009

Should I Be Here?

I know this is a question we all ask ourselves at different times, especially after an encounter with death.

I know I'm supposed to be here....I was given a second chance. What a lot of people don't know about me is that I could have died. September 4, 2000. I was getting ready to go to bed after the long holiday weekend, and preparing to return to work. I had an appointment with a podiatrist the next day, an appointment that never took place.

During the last weeks of August 2000, I began having pain in my feet. This pain just wouldn't go away. I went to the podiatrist, and was told I had plantar fasciitis, and heel spurs. So I rested, took pain relievers, and wore the most comfortable shoes I could tolerate. I then began to have pain radiating up the back of my calf. I felt something was wrong so I went to see my doctor. I didn't have a preferred doc at that office yet, so I saw the first available. This was Thursday before the Labor Day weekend. I was in such pain at this point, that I had pulled out my old crutches. This doctor was rude, and rushed me through my visit. He hurried to the exam room ahead of me, and was impatient with me for being slow. How fast can a fat girl on crutches go? When I finally got to the exam room, he asked me questions, and said "Go back to the podiatrist. You have plantar fasciitis." I left his office, and made an appointment with the podiatrist for Tuesday, after the holiday.

Friday at work, I took a walk with a colleague. I recall that while walking, I stopped to check my foot, because I thought I stepped on a bee. I was wearing sandals, and felt a sharp pain in my foot....similar to a sting. There was nothing there, and we continued our walk. I spent the holiday weekend at home, turning down invitations because I didn't feel well. So, Monday night rolled around, and I was getting ready to go to bed. I had taken something for an upset stomach, but it wasn't helping, so I took something else. I went upstairs to go to bed. I opened the window over the bed, and started to cough. It was a niggling little cough, so I figured I had stirred up some dust, so I headed downstairs to get my inhaler. I never got to use it, though. I felt lightheaded, and dizzy. I felt like I was going to faint. I saw my husband outside, and called him in...telling him I felt like I was going to pass out, and no sooner did he tell me I wouldn't then I did! He was able to catch me before I hit the ground.

When I came to, I couldn't breathe right.I was panting, couldn't take a full breath. I told my husband to call 911 because something was wrong. When the paramedics got there, they began assessing me, and asking questions. Name, age, the usual stuff. Then, they started asking if I'd ever had a panic attack. I said Yes. Well. That was it. They loaded me in the ambulance, and called the hospital. They radioed in that there were bringing in a 33 year old woman having a panic attack. That is what the hospital was prepared for, so that is what they tried to treat. I was wheeled to an exam room, and they started to administer medications to stop a panic attack. After several failed attempts, the rude nurse said to me "I know you are doing this on purpose. If you don't slow down your breathing you will hyper-ventilate" (or something like that.) So, when nothing was working, a doctor came over to see me. He noticed I was a little blue around my mouth, and had the nurse put a pulse-oxymeter on my finger. My blood oxygen level was only 70%. The doctor ordered a chest X-Ray, STAT! They literally ran through the halls with my gurney to the X-Ray department.

Back in my exam room, the doctor came in after a short period of time. He told me that I had a massive blood clot in my right lung, and needed immediate treatment. So, I now had a diagnosis... and an apology from the rude nurse. I was given morphine to help relax me while they planned my treatment and rounded up staff to do it. Sometime later the doctor who ordered the X-Ray came back to check on me. This time, he was dressed for the office. It was unfortunate, because I threw up ... EVERYWHERE! This was the beginning of my reputation at this doctor's office.

Before the treatment, I had to have a VQ Scan of my lungs. This is also called a ventilation-perfusion scan (V/Q scan), and uses small amounts of radioactive tracers (radioisotopes) to study airflow (ventilation) and blood flow (perfusion) in your lungs. The radioisotopes are attached to substances known as radiopharmaceuticals. This is not a fun test, as a mask is strapped to your face, then clicked into place on the machine, very effectively immobilizing you. It is not easy to stay still especially since the machine is so close to your face, which you can't move. I made it through the test, barely, but the technician said they got what they needed.

The actual procedure to remove the clot was very similar to angioplasty. They called it TPA or or tissue plasminogen activator. A catheter is inserted into a main artery at the groin, and threaded through the heart, to the area in the lung where the clot is. Then medicine is dripped onto the clot to break it up. I think the most disturbing part of this procedure was the assistant counting out my heart rhythm so that the doctor could thread the catheter through my heart.

I was put in a room in the ICU for a few days. The nurses took very good care of me, especially the one who washed my hair for me. Nothing helps you feel better faster than feeling fresh and clean. When I was taken back to radiology to see how well the clot was breaking up, I asked the female assistant if clots always broke up that quickly. She said she didn't know. I was only the third one they had done. I found out later that clots the size of the one I had were usually not discovered until an autopsy is done.

So after about a week in the hospital, I was sent home to rest and recover. That didn't last long. I was back in the ER within 48 hours. I had developed difficulty breathing again...this time there was incredible pain with each breath. Turns out, I had developed pleurisy. A common development with the treatment of a blood clot, but not everyone gets it, and you can't predict who will get it.

I spent a few more days in the hospital, and was sent home again. I was confined to bed, and confined to laying on my left side. I could not lay on my right side or sit up and lean back due to the pleurisy. This was not a fun time. I was out of work for a month, and at the time, I was working as a temp, so no work, no pay.

I was eventually released from care, and able to go back to work. It was difficult to work a full day, so I went back part time and worked back to full time. After a lung injury like that, it was surprising how easily I got tired. I was taking warfarin to prevent more clots. I was on it for 9 months before my heart healed. The act of the clot passing through my heart caused the main artery to stretch, and it took that long for it to heal.

I made many visits to the doctor's office. I was famous once the girls that worked there realized that I was the one who threw up on the doctor. They wondered why he had come to work in hospital scrubs and dress shoes. He told them about the very sick girl at the hospital who threw up on him. That doctor took wonderful care of me in that emergency room, and to this day he continues to take care of me, and my whole family. He was part of the practice I already went to, so I began making all of my appointments with him, and over time, my whole family transitioned over to his care.

So, here we are, nearly nine years later. I no longer take birth control pills, and will never in my life touch any type of hormone therapy. I had all sorts of tests done to see if I had any genetic risks factors for blood clots, since my father died from a blood clot - he had one in his heart and one in his lung. He was six weeks post-operative, though, and blood clots after major surgery are common. All of my blood test came back negative, meaning I had no risk factors for clots, so the clot was attributed to the use of birth control pills. Not being able to use hormones doesn't seem to be a problem, but with menopause looming in the not so distant future, I may have to suffer through it rather than getting relief from Hormone Replacement Therapy. I think I'm OK with that.

When I found out I was pregnant, I was classified as High Risk, and had to jump through circus hoops for the doctors because of this clot. They checked my records, and determined that in the five years since my Pulmonary Embolism (PE), there were only two new tests that I needed done. They came back negative, so all was good. Because of being high risk, I had ultrasounds every four weeks from week eight to 32. I have a wonderful collection of the ultrasound pictures of my son's development inside me. My doctor calls him my miracle baby, and really likes it when I bring him with me on appointments.

I feel very blessed to have this second chance. A second chance at life, a second chance at motherhood. I enjoy every minute with my son, the good and the bad, and wish he would stay little, but I know he must grow up, just as my other son did. You never know what will come your way in life, so enjoy as much as you can, do what you want to be happy, because you never know what day will be your last.

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