Today, is bed day. I spent yesterday cleaning my room, packing winter clothes, cleaning out all my drawers and my closet. My plan was that I knew I would be in so much pain, that I would take my Humira injection in the morning, I would just rest / sleep the day away. What I totally screwed up was....the days! Today is Weds., and I do my injection on Thursday. But, I took my injection today anyway. The pain was so bad, nothing was touching it. I didn't sleep much last night, so I took the injection at 5 a.m. this morning. It's been 4 hours, and I've eaten so much soup, I feel sick now, but that is okay.
I thought I would take today to catch up on what all is actually wrong with me. There is a list!
Starting with my heart. My Mom died when I was 12, and she was 35 of a heart attack. Nothing that was expected, but we found out later that it was hereditary. Her autopsy showed her entire circulatory system was just like an 80 yr. old women. At that time, her Doctor assured us that none of us would get this, this was something very rare. Her and Dad had 3 daughters. Chris, the oldest, Cathy the middle sister, and me. Cathy started having chest pain in her 20's, but no one believed her. One of the hospitals actually gave me maloxx and told me to take her home!! Later that evening, she returned to the ER and was in so much pain, but still the Lab Tests were showing nothing...every heart attack test was negative...but they knew something was wrong, so they did a Heart Cath on her and found that she had been having heart attacks, with a lot of damage, and she needed a Bi-pass. She was flown to Chicago to have it done. By time she got there, the Lab Tests started coming up POSITIVE. (almost too late) 10 years later, she passed away from a heart attack. This was in 1997, and she was 36.
About that time, I started having chest pain, and made my first trip to the ER with my oldest sister. They thought it was my gallbladder, or a spasm in my throat. My sister and I kept staring at each other..not knowing what to do, or saying....yet, knowing in our guts what was to come.
January of 2003 Charles and I were moving, and I noticed my heart was skipping, a lot, and I was exhausted. I was already off work because of what they called, "Fibromyalgia". I was scared to tell any one, it would make it real. By February, I had an appointment with my Doctor and told him I was short of breath, could feel my heart beat in my neck, and my chest hurt. He rushed me into another room, and at the same time of pulling off my shirt, and connecting me to a EKG, they were all assuring me that nothing was wrong. EKG - - Normal.
Next, I was to drive a few blocks to the Lab that he used. Labs - - Normal. I know this was supposed to make me feel better, but with my Mom and my Sister always being Normal, it didn't! He then decided I should see a Cardiologist for a stress test, and luck would have it, they had an opening in 2 days. Charles and I drove back over and guess what...I passed that as well. Well, I had ONE little spot that could be mistaken for women with large breasts. SO, he was going to let US decide what we wanted to do. Our choices were...1. We could wait until I had more symptoms. 2. Let him refer me to another cardiologist in Springfield or Mayo Clinic and they would do a Heart Cath. or 3. We could do another type of Stress Test. It was our decision! It took us about 5 minutes to decide....We were going to Springfield for a Heart Cath. We explained to him about my Mom and Sister and how Cathy passed the Stress Test as well, and I didn't want to take any chances, and as horrible as I felt, something was wrong.
We had to wait until the end of February 2003 for the Heart Cath. We met Dr. Karpen, who did not smile, or talk to us, other than to say he felt there was NO reason for us to be here because I passed all the tests, and the little "blip" on the stress test is probably there because I had big boobs! I looked at Charles, and said "Yeah Charles, my boobs were good for something huh? .... no smile, no remark..nothing from "Dr. Smiley" (what we called him for awhile)
I decided to stay awake for the Heart Cath because 1. I wanted to see what it was like, and 2. I wanted to know what was wrong with me before my family, and I would decide what they should know first.
During the cath, everyone talk to each other, but not to me, I just kept watching the monitors, until Dr. Karpen said, "SHIT". He moved from the table, and said, "yes, you have the same thing that your Mom and Sister Died from."...and started to walk from the room. I was crying and said, "am I going to die", he wouldn't answer me. I tried to get up from the table to go after him, but all the techs and nurses held me down, and I started fighting them....yelling after him..."AM I GOING TO DIE?" He said, "I don't know if I can help you, we'll talk."...and left....with me crying, and about 6 people holding me down. I still had the sheath inside my artery where they cath went into my heart, so I couldn't move. They kept telling me to hold my leg still or I would bleed...I kept crying, telling them, "it doesn't matter, didn't you hear him?"
He called into the room, telling the nurse to give me something to calm me down, and the next them I remember I was fighting sleep. I didn't want to go to sleep because I wanted to be there when he told Charles I was going Die.
My family came in, and they were all crying. They knew. He told us that I needed a Power of Attorney, and a Living Will, as I wouldn't make it through the year, and he didn't want me to leave, as I needed an Open Heart. It was all too much!! We left. I got all my paper work done. But I didn't want the surgery if I was going to die anyway.
April 2003, I couldn't breath. I couldn't walk to the bathroom without holding onto the walls. I knew I was dying. I called Dr. Karpen's office, and he was on vacation, so I talked to his nurse. She told me I needed to get there ASAP. I had my open heart April 3, 2003.
One year later, it started all over again, and thank God my doctors listen to me, and not the lab's, and another heart cath showed that out of the 4 bi passes, only 2 remained, and they got a stent in one of them. A year and a half later....another stent.
Then my last sister died of a heart attack! She was 47 yr. old, leaving her son and 2 grandchildren behind...and ME.
A lot of things happened in between, but this is the short version.
During all of this, I was fighting so many doctors about all the pain I had in my hips and back. Finally, one told me it was SI joints that were inflamed, and when he did the injections under a flourascope, he them told me I had Ankloysing Spondylitis. Sadly, it took about 5 more years to get it diagnosed and treated.
There has been depression, panic attacks where I didn't want to leave my house, Diabetes with up to 7 injections per day, and Gastroparesis..and all the other things that go with it. (leave that to another day)
So, now I am on Humira, thanking God. May 30, I'll see the Dr. to see about doing a shot per week, instead of every other week. I am going to go to Barnes Hospital in July for the Gastroparesis, and see about a pacemaker or Gastric sleeve. September, I'll go back to Dr. Karpen to see how my heart is doing, and if I need to do a heart Cath to check if this out of breathless-ness has anything to do with my heart, or now.
So, that kind of catches ya up on the "old" medical issues. I'll catch you up on some newer some the next time. Today, I've got to rest. I am exhausted. I'm ready to fall asleep trying. Please forgiven me for any typos.....Oh yeah...diabetic retinopaty is another, and my Doctor quite!
Hope you all are having a great day.....maybe more later, after my nap.... :)
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