My name is Yvonne. I am Craig's wife and full time caregiver. I have been following this fabulous community for just over a year and have not only said many a prayer for you all, but am forever grateful for all of the knowledge I've learned.
Craig's story is long and complicated so I will try to keep it short.
Craig has Multiple Sclerosis. On November 29, 2014, he was hospitalized for a relapse and was given 5 days of IV solumedrol. On day 3, it was determined he had a urinary tract infection. Sent home on day 6 with a week of amoxicillin for the uti. The entire month of December, we had a nurse, occupational, physical, and speech therapist come into the house to work with Craig. He uses a walker for mobility and tires very easily. Throughout the month his heart rate was 140-160 at rest. Mid month, he started sweating profusely while sleeping. His primary care physician attributed it to his Cymbalta level and decreased it to see if that helps with the night sweats. The week of Christmas and New year's, I tried to get him into her office but she always said, it takes time for his body to adjust to the new level.
On January 3rd, 2015 I took him to the ER as he had severe pain in his left clavicle area. They immediately hooked him up to more steroids, thinking it was another relapse. When the Dr. (After the PA) came in, I showed him pictures of our bed because I was having to change the sheets 3 times a night and told him that his PCP thought it was related to his Cymbalta levels. Immediately blood cultures were done. He was septic and the bacteria was the same as what was in his uti, enterococcus faecalis. The bacteria had absessed in his sternoclavicular joint, clavicle and first rib and his spleen and he had endocarditis. He had to have his sternoclavicular joint, clavicle, and first rib removed on his left side. Craig spent a total of 9 weeks in the hospital in 2015.
We've seen cardiologist and a surgeon down at U of M who thought despite his severe aortic regurgitation, his total lack of energy and shortness of breath that he was too high risk to do surgery and told him no lifting over 25# (which means our grandkids)
Last week, we met with a local surgeon who just looking at the heart cath, angio, 6 TEE's, numerous CT' s, and several echoes results, he told Craig, I bet you can't wait to have more energy and be able to breathe better. What a breath of fresh air! I finally feel like we've found someone who truly is looking at helping Craig.
Long story and I've left out many details. We are looking forward to having his aortic valve replaced and the vegetation that remains on his heart, gone. It's been a very long 20 months waiting.
Surgery is scheduled for Tuesday, September 13th. Craig will get an ONX mechanical valve so we don't have the risk of endocarditis again on the new valve and so we don't have to repeat this again as his MS progresses. Unfortunately, he will be on warfarin for life but that's the last of my concerns right now.
Thank you Adam for starting this forum. I ordered both the digital copy of your book as well as the book itself last summer. I read the digital copy the day I received it and Craig has the book and is reading it.
God bless you all! I'm excited to finally be able to comment on posts :0)