If interested, please check out the latest information posted under the "About" section of my website. I made a few edits on the information presented, as well as uploaded a new Medications & Diagnoses as of May 2019 document.
Also, for those that may be curious... below is a listing of many of the infections I experienced over almost a two-year period. (note - it was not an exhaustive list). Mind boggling!
Thankfully, my allergist/immunologist was able to confirm through various lab work that I do in fact have an auto-immune deficiency. Now, more testing to come to help determine the exact one. Stay tuned!
Yesterday, my dentist office celebrated Red Nose Day. Here's my mug with my fav dental hygienist, Nikki. Taken about 9:30 am. I’m lucky to have this amazingly kind, compassionate, and gentle dental hygienist on my team! Dr. Small is wonderful, too!
For every picture snapped with a red nose on there and posted to their Facebook page, the doctor's are donating $5. To learn more...https://rednoseday.org/faq
In preparation for heart surgery, I needed to get my 6-month cleaning in and checked out for cavities. I return late next month to have one filling re-done that fell out a few weeks ago and to have a whole host of x-rays. The dentist has to certify that I don't have any teeth issues - such as infections, cavities, etc... anything that could lead to troubles down the road.
So... that leads me to my "Mayo Update"....
Maru and I had a whirlwind trip last Wednesday and Thursday up to Rochester, MN. Wednesday was reserved for multiple tests - some of which felt repetitive, but I suppose that allowed the physicians to see any changes that may have occurred since the original test(s). On Thursday, we went to the heart class, saw the cardiologist, more lab work was done, and met with the cardio-thoracic surgeon.
Learned a few new things, but overall, the information provided was a reinforcement of our understanding from the doctors in Des Moines.
Everyone agrees - yep - mitral valve needs to be replaced with a mechanical valve (pictured below). A repair is not an option. The anterior side of my mitral valve has prolapsed. The posterior side of my mitral valve has what is called stenosis (it has thickened and is not moving properly).
Before surgery can happen though, a few more tests are needed, which can be done at home, in Iowa City, and/or the day before surgery. (Such as a CT scan with contrast, allergy testing of certain antibiotics, lab work, etc).
Also, we were surprised to learn that I’m anemic. I’ve never been anemic! Oofta! So, I’ll be prescribed an iron supplement. That will need to be corrected before surgery. Lastly, I’ll need a letter from my dentist clearing me for surgery (see above about Red Nose Day).
Another wrench... I have costochondritis. What is this? It is an inflammation of the cartilage that connects a rib to the breastbone (sternum). Pain caused by costochondritis can mimic that of a heart attack or other heart conditions. Fortunately, my primary doc has prescribed a course of prednisone to try to reduce the inflammation. So far, it is helping. (I've suffered with chest pain since April 29th. Finally, we now know why and it is not life-threatening.)
Good news! The cardio-thoracic surgeon believes that we have sufficient time to address the aforementioned items - that we are not in an emergency situation.
Therefore, surgery has been scheduled for Tuesday, August 13th. The only option for the surgery is to crack my chest open. This will require me to probably be in ICU 2 nights and then in the hospital possibly 5 more nights. The surgeon set appropriate expectations - I will likely be on a ventilator until I am transferred from ICU to a regular bed on the unit. This is because of my sleep apnea.
Then, yes, inpatient cardiac rehab has been recommended. I am researching facilities in the greater Des Moines area.
Typically recovery is 8 weeks. Mine will be longer due to my other health issues - especially the Ehlers-Danlos Syndrome - as it can increase the time needed to properly heal.
The silver lining in all of this - Dr Geske, the cardiologist, said that I’m probably carrying an extra 5 lbs of water weight on each leg! So, the lasix (diuretic) is being doubled.
Overall - we were greatly impressed by the Mayo Clinic! The campus was gigantic - everyone - absolutely every single person we crossed paths with that worked for Mayo - were incredibly nice and helpful. I am happy with my doctors and am confident that I am in the right hands!
Thank you again for your unwavering support! Hugs & love! ❤️🙏❤️