CarisHealthJourney

Well, it's struck again. The big C. But in a new and fun way......

Because I take oral radiation and steroids daily, my immune system is not great.

I started not feeling great on Tuesday. Low grade fever, headache and fatigue. Then came the urinary symptoms (frequency, blood on my urine, and burning), so I thought I was passing a kidney stone (which I get frequently due to my body not being able to control my calcium level bc they remove 3 or of 4 parathyroid glands, which control your body's calcium). 

By Wednesday at noon, I was writhing in pain. I went to the ER, where I did have a stone (fortunately I passed it while in the ER), but the stone wreaked havoc on my kidney. I had an awful kidney infection with a few renal abscesses (pockets of pus 🤮). My kidney was so swollen and irritated, it caused an ileus (slowing/stopping of the movement of your intestines) which caused a small bowel obstruction. They put a nasogastric tube in my nose to decompress my stomach to allow my intestines to resume movement (peristalsis) to my GI tract. The wonderful nurse had to attempt to get the tube down 5 times before she was successful on the 6th try. (See photos). 

I received copious amounts of potent antibiotics and more steroids to attempt to decrease the swelling and irritation in my kidney. My kidney function was not great, but had slight improvement by the time I discharged home. 

Here's the crazy part, apparently my insurance is not active (due to the insurance companies error). So, I had to pay an upfront deductible, which was a ridiculous amount, at the ER and cash price for ALL of my prescriptions. If you remember, my daily oral radiation was $17/day. My disagree has doubled since then, but GRATEFULLY the price is did not. Now it's $24.17/day. 🙄 (How do the people who come up with these prices so keep at night?)

While I'm home and on the mend, financially I'm struggling. Anything helps. 

Hi friends! 

Just a quick update. No news is good news, right? 

I will have scans of my kidneys and return to the urologist on Wednesday to see how they're functioning. We know there is at least one stone in there right now. Hopefully, it'll pass on its own this time! 

I still have periods of Aphasia and dysphagia. Dysphasia and aphasia are both communication impairments that can result from brain damage or injury, and can affect language production and comprehension. It causes my speech to be slower and stuttering. 

Still no sensation in my left hand and left mid shin through my foot. But that's progressing in the right way. 

My iffy balance (and dog drool) caused me to fall directly on to my left knee, causing a hairline fracture and some internal damage. I'll see the orthopedic tomorrow to reassess that situation. 

Keep all the good thoughts, prayers and juju coming. They seem to be working! ❤️

***latest update***

Bear with me, this is a little long but thorough, so if you care to know the EXACT details, read on at your own risk🤣...

The "big" stroke was on 4/18 where I was hospitalized at KU in the Neuro ICU for 6 days. I had gone on for a simple kidney stent placement because of the kidney stones i was getting. My calcium level is poorly controlled due to having 2 parathyroid glands removed in one of the cancer removal surgeries. I then had two mini (but felt big) ,one on 4/27 and one on 4/29. I'm still suffering residual effects such as slurred speech, loss of sensation and function in my L arm and L leg, trouble finding words, short term memory loss, and a hard time regulating my emotions.

The strokes were caused by clots in my blood stream. Most likely, these clots are due to the Medullary Thyroid Cancer. Thyroid cancer can cause blood clots, also known as venous thromboembolism (VTE). Those VTE's made their way to my brain because of a heart issue called a PFO, or Patent Foramen Ovale. PFO is a hole that exists between the left and right upper chambers of the heart before birth, but usually closes shortly after birth. If it doesn't close, which obviously mine did not, it's called a PFO. In about 75% of patients, PFOs close on their own, but in the remaining 25%, small amounts of blood can sometimes pass through the hole. In most cases, PFOs aren't clinically significant and don't require treatment. However, in rare cases(mine?), a PFO can be a risk factor for stroke. This is also called a RIGHT- TO-LEFT Shunt. A right-to-left shunt: The degree of right-to-left shunt can be mild (45%), moderate (42%), or severe (13%)...mine was 21% due to a tear at the intersection of my right and left atrium.

On Tuesday May 14th, I went in to to have the PFO closed with a device specifically designed to close this abnormality and have the tear sutured. The surgery went as planned (I was beyond anxious to go under anesthesia due to having had a frigging stroke the last time I went under), and I spent the night in the hospital. All was well, until I was discharge home and 2 days later, my heart rate was staying in the upper 150's and my blood pressure was dropping to 50/30 upon standing. i was nauseous, dizzy, passing out, not able to hear well, with a rough headache(which scared the $hit out of me bc, well, I've had 3 strokes at this point) . I had repeat scans and lab work this past Wednesday which showed significant inflammation and my heart valves have some small regurgitation. As well as Supraventricular Tachycardia, which was also seen on my permanently placed rhythm and pressure monitor that they put in during the surgery. Supraventricular tachycardia is a rapid heartbeat that develops when the normal electrical impulses of the heart are disrupted. So on Wednesday, I was started on Midodrine to increase my blood pressure and Amiodarone for the SVT (but it can lower your blood pressure🤷‍♀️). 

Since beginning the meds, I feel better, but still not great. Still a bit dizzy, brain fog, and MILD head pressure. I'm taking things VERY slowly these days. I feel lazy bc I sit/lay around most days, which is so very hard for me. The kids and I went to the zoo yesterday. My cardiac surgeon wants me to slowly introduce extremely light exercise. The zoo has lots of stopping points, and we rode the tram down and back to Africa. We didn't get to go to all the areas, but dang if we didn't have a wonderful time.

That's my update. Questions? Comments? Concerns?

Hi again,

After the stroke, I had multiple tests run to find the source of the stroke. (We knew it was a clot, but how did it get to my brain?!) The day after the stroke, in the ICU, they performed an Echocardiogram. The echo showed that I have a large PFO.