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Diagnosis: Aortic Stenosis, Tricuspid Regurgitation, Coronary Artery Disease

Member Since: September 22, 2011

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Terri Grimes posted an update

11 years ago (May 20, 2015)

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!

👍 Jason Lathrop reacted to this

Tammy Pilcher

Wow, Terri! Thank God you're okay! I pray the rest of your recovery will be smooth sailing! :-)

Wiliam Height

Great job Terri! I followed your story, and glad to hear you're doing better.

Duane Beeman

If I ever had a cardiologist put me in that position, in that fashion, he'd either see me in the parking lot or the court room.......but he'd see me.

Pat Bluemel

i was thinking of you today, you must of known people were waiting for an update. I hope this is the turning point and you are on the road to complete health.

Terri Grimes posted an update

11 years ago (April 23, 2015)

At the end of today I will have just five weeks and six days left to be on the dreaded PICC line and IV meds. These Meds kill both the bad and the good as I'm unfortunately learning. I see now why they say it is similar to going through... Read more.

Terri Grimes

That is VALVE replacement not CLAVE. This darn autocorrect. Sorry.

Tammy Pilcher

Terri, I'm so sorry you're having to go through this! I'm praying for you and YES, that's a good man!

Cheryl Batzing

Terri, will continue to pray for your full recovery! Baskin Robbins?! What a treat!

Penny Prichard

Sorry your are going through this. Sending positive thoughts and healing hugs

Tim Goff

you have had a tough go of it, but congratulations to hanging in there and being ready to move on.

Nancy D

Praying for the end of endocarditis, and return of eyesight and complete health. Hang tough, and know we are here in the background cheering you on!!! We must stay vigilant in protecting ourselves from infections..... I am still not able to stick my feet in a pedicure bowl because of... Read more.

Pat Bluemel

I'm sorry you are going through this. Endocarditis Is one of my biggest fears. I hope you get the all clear after treatment.

Terri Grimes posted an update

11 years ago (April 17, 2015)

I posted in Feb about getting ill after a dental visit. A concern since I have a mechanical aortic valve. Turns out I had every right to be concerned. If hindsight were foresight I would have been more proactive. Now I'm paying the price for it. About 3 weeks ago I had an episode when I was in a department store. Suddenly, with no warning I got tunnel vision and lost the vision in my left eye for about 5 minutes. I was very dizzy and disoriented and felt like I was going to faint. I didn't know it at the time but I'd just had a stroke. I called my cardio that afternoon but didn't want to come in to the ER to be checked. He said that since I had no residual effects from it that it may have just been a reaction to the increased amount of lasix I was taking. Mistake #1. Last week we went to Memphis TN on a BBQ crawl for spring break. The first morning at breakfast in the hotel, I was standing at the buffet and suddenly, with no warning, got tunnel vision, dizzy, disoriented and felt like I was going to faint. I didn't know it, but I'd just had Stroke #2. That day we went to Graceland and I felt so funky I was afraid I was going to die at Graceland. I prayed to God, asking him not to let me die there. No offense to Elvis, but I didn't want to spend my afterlife wandering Graceland, although the Jungle room was pretty cool. We came home a day early. On the drive home I called my cardio and told him I'd had another episode. They told me to come in the next morning first thing. That morning I woke up with my entire left arm numb and my left hand felt like pins and needles, like when your hand goes to sleep. And I was having problems walking because my left leg felt so weak. I didn't know it yet, but I'd had stroke #3 sometime in the night. They did an echo at my cardio's office and I have to say, it was the shortest echo I've ever had. I thought that meant everything was fine. So imagine my shock when they came into the changing area and told me to go straight to the ER, do not pass Go, do not collect $200. I told them I had plans to shop that afternoon with my granddaughter. They insisted I go to the ER. They didn't tell me then, but they'd seen something on my heart valve during the echo. It turned out to be what they called "vegetation." It was a blood clot and endocarditis. I was admitted to the hospital and had two MRI's of the brain, a TEE and I forget what else. I was diagnosed with three strokes, a blood clot and endocarditis on my mechanical heart valve. I was one lucky woman not to have had a major stroke or death. The doctors were baffled by the fact that I didn't have a major stroke. I had a team of doctors. My cardiologist, my heart surgeon who had originally put the heart valve in three years ago, an infectious disease dr, a neurologist and a hospitalist (like a GP). When the bills come I'm likely to have another stroke. I was put on IV medications that are very strong. Two dr's told me it would be similar to someone on chemo, it would be no cakewalk. Boy were they were right. Today is my 3rd day home from the hospital and already I am fed up with this regime. There is a period of 4 hours during the day when I am not hooked up to the IV. Then I go to bed at 1am and wake up at 6am to start the process all over again. The Unisom (Ampicillin) takes 1 hour 15 minutes to run through the IV. I take that four times a day. The Vancomycin takes 3 hours 30 minutes to run through the IV and I am take that twice a day. And I take C-pro by mouth. These meds make you so very sick. They kill everything, the good and the bad. I have 6 weeks of this and I am only on day 3. These drugs give you massive, horrible, painful diarrhea, make you sleepy, make your arm cold, gives your entire body chills, blurry vision and makes you feel so very worn out. I can't drive my new car (only a month old) because my vision is so blurred. And I can't go anyway because not only am I almost constantly hooked up to the IV, but I'm also immune challenged right now. And the expense. It staggers my mind. I'm on medicare and before I'd even gotten out of the hospital I was in the donut hole. Try paying $320 every 7 days just for two of the IV meds. That doesn't include the IV supplies, the other numerous drugs you have to take, the flora (probiotic), the imodium, the pepcid, the this, the that. It is overwhelming. And everyone wants their money upfront. Getting sick is expensive. All because I had a simple cavity and went to the dentist for a drill and fill. Terri

Nancy D

This week, I had my first cleaning since last year due to the surgery. I have a tissue(cow) valve and have to medicate prior to any dental procedure. I pray the antibiotic pre med was enough, the protocol I had been on when it was indicated always had a loading... Read more.