What do you do when this life that you have isn’t as smooth as you thought it would be? I’m being totally serious… What do you do? K and I have found ourselves in quite a pickle regarding our on going health issues; K with his heart and clotting issue and me with an endless amount of what the hecks and why do I feel this way. We’re managing the best we can, but can’t help but notice the toll it’s taken on our life.
Around the beginning of December, K was taken off his blood thinning medication after six months; we were pretty thrilled about the fact that we could finally have avocado in our house.. party animals, I know. We continued our semi-healthy food intake, but totally splurged when it came to anything holiday related. On December 14th, while I was in SF at a doctors appointment, K let me know that he was at his doctor’s office, waiting for a CT of his chest because he had severe shortness of breath, something he had only had once before, when he was initially diagnosed with DVT/PE. About an hour went by and sure enough, his pulmonary embolism was back. It was a huge blow to the progress that had been made the past six months of medication, exercise, and healthy eating.
We decided that immediately after the holidays, I would attempt to meal prep for K, with the hopes that if I fed him healthy options, he couldn’t crave the junk. He started to do some mild cardio and also cut out caffeine on top of eating 5-6 small meals per day. K has seen a pulmonologist and cardiologist again and they are following him quite closely now, since his pulmonary embolism should’ve resolved within those six months. We also found out that K has a pretty serious case of Pulmonary Hypertension that is requiring further evaluation, but hope to resolve it with our new lifestyle of clean eating, zero salt and lots of water. To date, K has managed to lose 20lbs, which we are absolutely thrilled about.
Now… On to the cluster that is my health. I was seen by Dr. A who is by far one of the most relatable doctors I have ever had the pleasure of seeing. She was eager to meet me after seeing my laundry list of medical conditions and actually said, “I was so excited to see a patient that has NK Cell deficiency.. Not that I’m happy you have it but it’s so rare.” She explained that nothing was structurally wrong with my heart, but the tachycardia I’ve been dealing with could be a combination of too much caffeine (no more monsters) and lack of sleep. She was very empathetic to the situation with K and explained that I need to make myself better if I wanted to be around for him. She explained that I also have vasovagal syncope and that I’d be better off living on Mars. She was an absolute hoot the entire hour long appointment and gave me her contact information to keep in touch with my on-going case. Haha, she probably regrets that at this point, as I’ve been have something super similar to POTS, so on Friday I’ll have an event monitor put on. She also referred me to Nephrology for my fun case of hypokalemia and a pretty evident sodium deficiency too.
Ohh before I forget, that thyroid ultrasound showed some fun little nodules; so following my Immunologist’s orders, I scheduled an appointment with an ENT to have them biopsied. Talk about a WASTE OF TIME. I rarely get frustrated with appointments anymore, but I couldn’t wait to get out of that office! The doctor started by introducing himself and then saying, “you’re a rarity.” Thanks, I know that, please move on to what were doing with these thyroid nodules please. He went on this rant about how we need to be so proactive but then in the same breath said he wasn’t worried, so onto UCSF we go for a second opinion.
Since my last post, K and I have also celebrated some great things; one being my four year remission anniversary. I like to consider January 21st, my second birthday, it’s filled with laughter, love and memories of what that day brought us in 2014. This year, we went to dinner and I bought myself some balloons, because why not? It was a solid day of happiness.
This week brings a ton of blood work as we attempt to narrow down some possible diagnosises, it also brings a nephrology appointment and lovely event monitor.
Thanks for reading about our beautiful, messy life. Xoxo.