Hello everyone, hope things are going well your way! My life is a little better now (knock on wood) but I have gone through another ordeal since we talked last. In this post I will tell you what is currently going on in my life!
I’m going to say it was a month ago when one night, out of the blue, after eating supper, I started not feeling so well. However, that night I promised my daughter that we would go to the movies. I started feeling nauseous before we left for the movie so I took a zofran before we left. During the movies, I started having diarrhea and missed a lot of the movie! Also, for some reason both my arms started aching badly, not the muscle but in the bone. It was late when we got back so my daughter went straight to bed and my arms started aching more and more by the minute. I tried to go to sleep, however, I could only sleep 30 minutes at a time before the pain in my arms would wake me up. I got up to walk around to see if there were any shortness of breath and I could breath okay but my heart just ached and it was beating faster than normal. I also felt warm so I checked my temperature and it was 100 degrees. I walked the floor for a while before I took a pain pill just to get some sleep..before I went to sleep, I wrote my husband a note telling him that if something happens to me, this is what I was experiencing and this is what I did for it!
The next day, my Home Health nurse came to change my dressing and draw some blood. I told her what I experienced the night before. She had to call my primary doctor to tell her about my PT/INR so she mentioned to her what I told her. My Primary doctor called me later and asked if I could get an x-ray at Mercy Hospital in St. Louis then come to her office for a visit. So off to St. Louis I go to get the x-ray! At the hospital, I overheard the radiology technicians discussing the x-ray so I knew it wasn’t good before I got to the doctor’s office, I was just hoping it wouldn’t be too bad. At my doctor’s, she told me that the x-ray showed what she thought looked like pneumonia. She took a look at it again and told me it could also be another clot! She wanted me to go to the ER at Mercy and get some more tests ran to determine what exactly it was.
I got in pretty fast when I mentioned I was there because my doctor thinks I may have another PE blood clot! Anyhoo, another test was ran. Since we now know from the previous post that I cannot have a CT Scan done because the dye made my right kidney go into failure, they gave me an alternate test. The technician told me to put this mask over my mouth/nose and hold it tight so that it creates a seal around my face. She then sprays this stuff into the mask via the air hose. Supposedly I was to hold this mask tight to my face for 5 minutes. OMG! I could not breathe and was hyperventilating!! I lasted for a good 3 mins and I told her that I couldn’t breathe! She let me cheat a little and let some air in. There wasn’t much air coming through that mask!! Finally the test was over and they told me I had a small clot.
I was admitted but this time it wasn’t critical that I stay in bed for some reason. The doctor’s believe that since my PT/INR was below the therapeutic range for three weeks in a row, my body had a chance to form another clot. This time, the doctors’ main goal was to get my PT/INR up to where it is suppose to be (between 2-3). They had me on a pretty high dosage of Coumadin and gave me Lovenox shots in the stomach to get my PT/INR up. I finally left after 4 long days in the hospital with a PT/INR of 1.7 ( since it was moving upward, I talked them into letting me go)!
Once I got out, my Primary doctor told me that she could no longer take care of my Coumadin dosage because it took more time than she had to regulate me so she referred me to a Hemalogist to help. During my first visit with this doctor, he degraded me to the point where I almost walked out. As I proceeded to tell him my history with Crohn’s Disease and PE blood clots, his head must of been in the clouds. I don’t think he even heard a word I said to him! He started asking me questions about my Crohn’s meds like if I’ve taken this or that to control it. This medicine he mentioned is medicine I took back in 1998! I’ve had Crohn’s Disease for 21 years and have tried everything currently out there. If he would have listened to me in the first place, I wouldn’t have to repeat myself! Then he asked why the doctors haven’t put me on something like Eliquist or Xalelto. When I told him they don’t know how much of that I would absorb since I have Short Gut Syndrome, he just looked at me with this big grin like he didn’t believe that they would say that and I was lying to him! That’s when I almost got up and walked out..He just looked at me and told me to take 7mg and Coumadin and get tested in 2 weeks! I did speak up and told him that I was currently getting tested twice a week and I at least wanted it tested weekly. He agreed.
Since then, my PT/INR has been everywhere and I hope it gives him hell!!
I do have to say that my Crohn’s Disease hasn’t really been bothering me that much lately. I probably just jinxed myself! Although I have had some pain on my right side, it could be much worse. Thankfully only one system at a time is acting up and not both…yet! I guess the only thing to do is to take one day at a time. Oh yeah, I did stop taking my hormone pill because they said that may also be the cause of the clots so now I am in full-blown hot flashes again! I guess I would rather have the hot-flashes instead of the clots!! Until next time..
Chow for now!
Kelly