Hello my friend,
To say that last night was scary for me is an understatement. I am still feeling the effects this morning and my mind is a spiderweb of questions and emotions. You know that little voice in your head that whispers in your ear? The little Jiminy Cricket that tells you that something probably isn't right? Maybe it is a gut feeling that acts as your conscious. Well, I should have listened to mine. When it comes to having a disease like Crohn's Disease, there are so many unknowns. There are even things that the doctors don't know. So they use there best judgement and suggest a treatment that will help you with your disease. Sometimes they work and sometimes they don't. For me personally I have to fail a treatment or two before we find one that works. Last night my body rejected my Remicade treatment. I should have listened to my Jiminy Cricket. This treatment has always been hard on my body and each infusion seems to get harder. I would explain this to my doctors each time I saw them, but because it had effectively put my Crohn's into remission they wanted to keep me on it regardless of the side effects. It was a life or death choice and they were hoping that this medication would last 20 years. It lasted 3. With each infusion my side effects would worsen. I would get the "normal" fatigue afterwards but I also would get a fever, muscle aches, the chemo sweats, nausea, and joint pain. I felt like I had the worst flu ever and it would last for 3-4 days. Then I started to get side effects during the infusions. The first suggestion was to add Benadryl at the end of each infusion along with the Benadryl and Tylenol I would take before them. The Benadryl at the end was to help the abdominal muscle cramping that I would get on the way home. Then we added the steroid Prednisone to take with breakfast with the hope to lessen the side effects I would get afterwards. Next we tried slowing the infusion rate down to see if my body would handle a slower dose. Yesterday we added a higher dose of Prednisone with breakfast. None of these things worked. Half way through my infusion I started to get muscle cramps in my abdomen and I started to sweat. I knew I was feeling warm, but I brought it to my nurses attention when I noticed that my hair was wet from all the sweat. I also started to feel pressure in my chest and when I sat up from my resting position I instantly got a head ache and nausea. My nurse paused my infusion and asked if I wanted to wait a few minutes to see if the symptoms would calm down. We waited, but they only got worse. Then the charge nurse came in and took my vitals again. My heart was racing and my blood pressure jumped from 122/76 to 155/90. That was a big red flag so out came the oxygen, 50mg of Benadryl, and the IV steroid Solumedrol. After my nurse conversed with my GI doctor, it was suggested that I stop today's infusion. Thankfully after some water and resting time the Solumedrol and the Benadryl kicked in and my blood pressure came down enough and I was allowed to go home. The story did not end there. Unfortunately after I got home my heart decided that it wanted to race. No matter what calming exercises I did, I could not get my heart rate to go down. So I called my doctor on call and after explaining my symptoms of the racing heart beats, chest pain, and left side numbness, the nurse quickly said to hang up the phone and call 911. My husband was away from the house picking our son up from the sitters and I couldn't reach him by phone so of course this made my anxiousness feel much worse. I did call 911 and spoke to a wonderful Operator named Operator 109 and he instructed me to chew an adult aspirin and wait for the Fireman and Ambulance to arrive. He was wonderfully patient and kind and stayed with me on the phone calmly insuring me that they were on their way and helping me take deep breathes. It must have been a sight. Two Ambulances and a Firetruck took up my long driveway and my house was full of Paramedics and Firefighters. By the time they arrived my heart was beating so fast that my body was convulsing with each beat and I could hardly breathe. Operator 109 had instructed me to stay where I was, which was on my bed king sized bed, so before you know it I had one Firefighter on one side of me in bed hooking me up to the heart monitors, another behind me in bed with the blood pressure cuff and also helping hook me up to monitors, and another at the foot of my bed using my doctors paperwork to input my information. A minute or two later my whole bedroom and living room was full of men in full Covid-19 protective gear. What a sight. My heart rate was 159 and my blood pressure was higher. I was put on a gurney and transported to the Ambulance and it was off to the hospital for me. After 2 oral sprays of nitroglycerin, 1 adult aspirin, and 4 baby aspirins in the Ambulance, my blood pressure came down 18 points, but my heart rate still stayed at 150. It took six hours, 2 types of IV medications that I still don't know what they were, and bags of fluid for my heart rate to drop to 95. It is still high for me as my resting heart rate is usually in the 50s. But I am alive, exhausted, but alive. My blood work showed that my thyroid levels were not right and that contributed to the racing heart rate. Both the rejection of the Remicade and the Hyperthyroidism from too high of a dose of thyroid medication played off each other. It was a race to see which condition was going to have the most symptoms it seemed. They ended in a tie. My thyroid medication was lowered and there will be no more Remicade for this girl. What does that mean exactly? I'm not sure. I will have a colonoscopy (fun, fun) and an MRI to check the inflammation in my body and the state of my Crohn's Disease and I will have to be very good about implementing an Anti-Inflammatory Diet and Stress Relieving Techniques. I have to keep my body from attacking itself. I don't know what is worse, your body attacking itself or your medication attacking your body. My number one priority is to stay alive. I thought Remicade would help me do that, but it is up to me right now. I think back and wonder, if I would have stood up for myself and pushed further for the doctor to hear me when I explained how bad the Remicade side effects were, could last night have been avoided? This was the biggest lesson for me from last night. Listen to your body and speak up. The Doctors try their best, but they are not you. They don't have your body, nor do they have your Jiminy Cricket. You know what is good and bad for your body. You know how your feel. You have a say in the care and the prescriptions that you receive. You have the right to your own body. It is your body, it is your voice. Don't be afraid to use it! Thanks for listening my friends. It is back to resting for me. Until next time! Much Love, Danielle
1 Comment
Crystal
11/21/2020 05:55:30 pm
I am so sorry to hear of all you trouble I pray Jesus hears you and lifts you up remember he is their with you I pray you get better soon miss you❤️😍
Reply
Leave a Reply. |
AuthorHi there! Welcome to Grace In A Glass. My name is Danielle and I am so happy that you are visiting this site today. We all have something in life that we are working to overcome. I began blogging about my struggle with overcoming Esophageal Dysmotility and Crohn's Disease with the hope of reaching others with words of encouragement and hope. Thank you for letting me share my stories with you, and hope you have the most wonderful day! Archives
November 2022
Categories |