But I’m Getting Married…..!!!

Health-wise, the last month and a half have been very hard for me.  On July 5th, we had yet another wildfire near home. This fire came over the top of our mountain. That day, I was experiencing a full-blown migraines. It was getting bad, and thankfully my mom just happened to come home early, not knowing that I was suffering badly from the full-blown migraine. As she was rubbing my back, my dad called and told us there was a large wildfire  but didn’t know how close.

We went outside and saw a huge smoke plume behind out house. This fire would once again change my health.  We immediately grabbed hoses and watered the land.  My lungs are still paying the price.

I even put on my Vogmask (medical mask with a filter) the moment we saw the smoke.

My lungs are super sensitive and I know that I’m the “human fire detector,” but because we had had so many fires already and the fact that my migraine was a 20 out of 10 on the pain chart and me throwing up, my body was distracted. Then about a week later, the Detwiler Fire broke out and that 2,500 acre fire quickly turned into 81,650 acres.  Our cars had soot, the smoke covered the Valley, I had no energy and was struggling to breathe. I started to just stay home all day with oxygen and some pain meds because my body was hurting. I thought maybe getting out of the smoke and going to visit my grandparents at the beach would help but my energy remained depleted but I was finally able to breathe. Jake and I stayed there for about four days until coming home. 

While Jake and I were with my grandparents and my sister, firefighters got the upper hand and were able to control the fire but it remained burning for several weeks with terrible air. My health changed for the worse and I felt similar to right before the time I suffered from steroid toxicity. I hope its just the bad weather and the awful air, but I am scared because this is how my “bad” normal was for many years.

Four weeks ago, my health concerns increased, I woke at 3 a.m. for the usual reasons,  I started to feel weird and when I went to sit down, I passed out. When I came to, my chest was hurting and I felt my heart racing. I was sweaty all over but luckily Jake actually woke up and ran to get my dad. He took vitals and it was normal. I decided that I wanted to sleep and I’d text Dr. Sine in the morning. Plus, I knew my Concurrent Care nurse was coming in the morning. Although it was quite scary, I also knew that it wasn’t an emergency.

The next day my nurse came and my oxygen levels were a little low, but not too low; however, my blood pressure was low for me and it continued to stay low. All week my energy was low and I remained at home for the most part.  Because I had all of these weird things happening to me, Dr. Sine ordered the usual tests – echo, EKG, blood work and a PFT.  I am grateful to have a Medi-Port and I can just access it in order to blood and anything else I need through IV and the best part is that I can have it accessed at home.

Two weeks ago, while I was having my IVIG infusion, I accidentally spilt water on my Medi-Port site and had to get up to have my nurse change the dressing.  I got up and was completely normal.  We walked to the kitchen until I was about to sit down. I got extremely dizzy and my heart felt as if I was having a bad case of tachycardia.  I felt like I was going to pass out and couldn’t catch my breath. I set my head on my nurses chest and that is all I remember. When I regained consciousness, I was completely confused and had no idea what happened.  After I woke up, I became extremely sweaty and nauseous. It wasn’t until the next morning thatI learned that I didn’t exactly pass out, but had a seizure. This was a complete shock to me because I used to have migraine type seizures called, confusional migraines, but I was able to remember everything and respond while having them.  I even had about a 30 second warning that I was about to “seize.”  This time, I had know post-ictal effects such as inability to walk, except I was unable to remember seizing.

My mom called both my Stanford ACHD doctor and UCLA neurologist and obtained appointments the next week. We obtained the tests ordered by Dr. Sine and went to Stanford to see my cardiologist on Thursday. While there, we also mentioned that we think I had another episode because when I woke up, I had seizure symptoms.   Due to uncertain results and multiple symptoms, we followed up with Stanford Pulmonology on Friday. Signs are possibly pointing to exacerbation of my pulmonary hypertension and the discussion of a catheterization was had.

On Sunday, we drove down to UCLA and on Monday we saw my neurologist. She basically said the same thing.  She was confident that it was not neurological because I would be having more neurologic symptoms and I would not have recovered so fast. In my heart, I’ve thought it was my PH because of how I’ve been feeling and my symptoms fit.

Today, We got word that I will receive a cardiac catheterization procedure on September 15th at Lucile Packard Children’s Hospital to identify any changes from my last one and to determine if any interventions are appropriate.

Historically, I often pick up health changes before medical tests show anything.  I am very sensitive to changes in my body that subtle changes aren’t so subtle to me.   Regardless, something is definitely wrong. I have been getting worse and worse each week. I can barely get out of bed or have enough energy to do anything else. It could be simply that the wildfires triggered something in my lungs, or worse.  However, I am more comfortable knowing I will be having the procedure which is the gold standard to determine real changes in my primary conditions.

We have to figure this out because I refuse to be a sick bride and my wedding is only two months away. I know that its the worse time to get sick again, but at least I have a little time before our wedding. I just want to get better. It’s crazy that my health declined so quickly after such a good run.

My biggest fear is that I will be a sick bride and I can’t bare it. I will continue to update you with news when I have it. Thank you for your love and support.


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