Terri's Posts

What a journey it's been. First off let me say, endocarditis is no fun. Last Wednesday I went to my cardiologist for my followup. I had to get up at 3:30am to take my vancomycin and ampicillin out of the fridge. Wrapped my arm that had the PICC line with Glad press and seal and tons of waterproof tape so I could take a shower. After the shower and getting dressed it was 4am. So I went downstairs to the living room to start the ampicillin. That ran through the IV for an hour. Then it was time to run the dreaded vancomycin. That took 2 1/2 hours to run through, ending just in time for me to get in the car and drive to my cardiologist's office for my 8:30 am appointment. I was so freaked out that he wouldn't be running on schedule because I had to be home at 10am to take my ampicillin out of the fridge and run it through the PICC at 10:30am. Now I've been having side effects all along, ever since I started the IV medications on 4/11/2015. And from day one, when the IV meds would run through the PICC my arm would feel weird and tingly and slightly itchy. By last Monday it had increased so much that my arms (both) had turned bright red and were so itchy I had to take benydryl. My home health nurse thought I was getting red mans syndrome and suggested I slow the drip on my IV. By Wednesday I was ready to blow my brains out because of the discomfort. I get in my cardio's examine room and his nurse notices my arms. Worse yet, my blood pressure was 184 over 92. Not good. She said, "I think your having an allergic reaction to something." Nope, not possible. I've been taking these meds for over a month so I know I'm not allergic to them. My Dr comes in and immediately says, "Your allergic to the vancomycin. The IV drugs need to be stopped immediately." He couldn't make that call though. And since mere mortals aren't allowed to have the office number of the infectious disease doctor (and I'm serious), I had to call walgreens infusion dept and talk to the pharmacist. Dr Nasim only accepts text msgs. He does not accept calls. So the pharmacist texted him saying my cardio told me I was allergic to the vancomycin. It took the entire day, and I ran the IV drugs twice more, before the infectious disease doctor finally texted the pharmacist telling him to call me and tell me to stop all IV drugs immediately and have the PICC line pulled out. I had asked the pharmacist for the dr's phone number. The Dr told him not to give it to me or anyone else under any circumstances. So the pharmacist said how can she followup with you. He texted him back saying, "I don't want to see her. She can follow up with her cardiologist since he seems to know so much about what drugs she should or should not take." What the heck? This guy is good, I admit that. But what an arrogant jerk! He put so much extra stress on me. What if I hadn't gone to my cardio? I could have died from that allergic reaction. I'm lucky I didn't have a heart attack as high as my blood pressure was. When I told my cardio dr about how the infectious disease dr wouldn't let anyone have his office number he got angry. He said no patient deserves to be treated like that and should have access to their doctor. This is one of the many reasons I love my cardiologist. Not only is he one of the top ten doctors in Kentucky (according to Louisville Monthly magazine and number one according to me). Long story short, at 5pm last Wednesday my home health care nurse came and pulled my PICC line out. YAY!!! I thought that would be the end of my problems. Um...no. When you are dealing with a deadly disease it doesn't end so quickly. In fact, I'm still dealing with the side effects. Explosive, massive, black tar diarrhea which I've had since April 12th, blurry vision, hearing loss, nausea, itchy red rash, drenching night sweats, headaches and so much more. This has been a nightmare. I am getting glimmers of hope though. So I am hopeful that there may be an end to this someday soon. I had a long detailed talk with my cardio about my condition. The official report is that I had a blood clot on my aortic valve. My mechanical aortic valve. And there were traces of vegetation on it as well. I had three "mini" strokes prior to landing in the hospital. The first was Feb 20th when I was shopping. Then the first week of April, when we were on spring break vacation in Memphis, I had the other two strokes a day apart. So things were definitely gearing up to get much worse. Its a good thing I went to the ER when I did. This week I had bad news. A woman I knew from my home town died. She was only two years older than me. What did she die from? A blood clot on her aortic valve. She didn't even know she had heart problems. Yes, I dodged a speeding bullet. I am one lucky woman. Moral of the story, keep on top of your protines. Mine had been running 1.9 to 2.2 and even though I had been told to keep it 2.5 to 3.0, my family dr kept saying, "oh thats a fine number." No, it wasn't fine. Its not a good number for someone with a mechanical heart valve. I should have been assertive and told him that. Instead I became complacent and it almost killed me. Would I have gotten endocarditis from my dental appt anyway if I hadn't had the blood clot on my aortic valve at the time? Who knows. I did my due diligence and premeditated one hour prior to each dental appt but clearly that didn't work since I got endocarditis anyway. But I'm more informed now. And I'm alive. That's the important thing to remember. I've lived through a blood clot and endocarditis. I am awesome! We are ALL survivors and we are ALL AWESOME!