It worked! They patched the hole! I’ve got to spend the night in the hospital and get an echocardiogram tomorrow, but still, it’s all good. Moreover, Dr. MacDonald is optimistic that this IS the cause of my strokes, and that I may be able to wean myself of the coumadin. I’m excited! Thank you all for your support!
P.S. The socks are a big hit here in the cardiac unit, Mom! :)
I’m writing from the Ambulatory Care Unit, Bay 1 at Swedish Medical Center. I’ve been here since 6:30 (yawn) this morning. Dr. MacDonald is doing the procedure at 8:30, so I’m just waiting …
They got my IV on the first try, which is REALLY good. :) I had to give blood at the cardiologist’s yesterday, and it took them four pokes and a special call to somebody to bring over a [smaller] butterfly needle to get it. GRRR.
I hope this goes well!
Well, my CT scans came back negative. I don’t know what exactly they were looking for, but whatever it was, they didn’t find it. I’m going ahead with the surgery. :)
We got a LOT of snow here today — 19 inches at our house (according to Ben’s estimate). Wow! It was neat! We haven’t gotten so much since we’ve lived here. It accumulated on our deck, and then this morning the snow on the roof fell off and added to it. This made for a neat playground for Bonzo and Chaco; the snow came up as high as the hot tub! Bonzo went behind the tub (as he’s often wont to do) and got STUCK. Ben called for him to back out, but he just wouldn’t — he was scared of falling over the edge! He had to rescue him by dragging him over the cover of the hot tub by his collar. Poor pup — but funny! :)
Greetings! It’s been a while since I wrote. I feel kind of bad about that, but not much is going on here. I don’t do very much. :( In the past week, I’ve mostly taken the bus down to Boulder to go to therapy appointments. It sucks to take the bus because I end up waiting around; buses to Ned only come once an hour, and they take a 2-hour break at lunchtime.
On Friday, I went to the hospital to get blood drawn, and then I took the bus to Michaels to get some craft supplies. Afterwards, I had lunch at a little Chinese restaurant next door. Lunch was terrible, but I got this fortune:
I showed it to Ben and told him that either he needs to hurry up or he’s not the one for me!
Being stuck on the bus gives me a lot of time to think — about my impending surgery, mostly. My CT scan is tomorrow, so right now I’m drinking water like a fish; they want me to drink 8 glasses of water today and 4 tomorrow before I get there. !!! I looked up “AV malformation” on Google, as opposed to “AV defect” (as Ben thought my cardiologist said); it looks like I might, in fact, be a candidate for that. It’s a tangled mess of blood vessels and generally causes symptoms in the “second or third decade” — more often in men than women, but at least not exclusively in people with Down’s syndrome, as in the case of an “AV defect.”
I’m keeping my fingers crossed for that, but I’ve pretty much set my hopes on not having pushed hard enough during my TEE. I think it’s a possibility; during my TCD, Dr. Fanale had to have me push twice, and only on the second time, when I pushed REALLY hard, did he get the “uncountable” bubble response. Anna shared with me the SCUBA diving meaning of “Valsalva” — clearing your ears by holding your nose and blowing — so I figure I can try that and maybe get my hole to open up for the doctor. Fingers crossed.
It has snowed! We’ve gotten about eight inches this week. It’s been beautiful. :)
Well, I had my TEE yesterday, and the results are … disappointing. And inconclusive. They found a TINY hole — it let ten bubbles through. Ten! That’s it!
The plan is to get a CT scan next week and see if I have any “AV defects” — that is, whether an artery and a vein managed to join. That would explain why the TCD was so positive, but the TEE is negative. If not, Dr. MacDonald will try to put a patch in my heart, but he predicts 50-50 odds of it working. He doesn’t want to punch a hole in there just to get the catheter through. (Sounds reasonable to me!) Even if it does work, it’s debatable whether I’ll get off Coumadin instantly.
Even suckier, I was awake through the ENTIRE THING. They warned me that I’d be “awake” throughout so that I could do a Valsalva, but then they skimped on the sleeping medication even more because of my low blood pressure. The result was a very awake, responsive, remember-ing Kathy. SUCK.
Here I am before the procedure:
And here I am during the procedure:
I’m sorry. I feel like I’m disappointing people when these results keep on turning up negative. I would like to reassure you that I am TIRED of being an enigma, and it’s not like I secretly enjoy being so mysterious. I am ready to find out what’s causing these and GET RID OF IT.
I went to the cardiologist on Thursday. He had good news: (1) he thinks I do indeed have a PFO, (2) he’d like to fix it, and (3) it IS covered by insurance! Also, he said that I might have caused me second stroke by doing yoga. (I’m not stressed out about it; it’s just good to know that it may not have been random.) I’m going to have another TEE on Monday to confirm the hole.
“How are you going to find it?” I asked. “The neurologist said that you wouldn’t wake me up during the TEE … is that true?”
“I’m sorry,” Dr. MacDonald said, “but we will need you to wake up. I’ll need eye contact and everything so that you can do a Valsalva.” Oh, geez. Also, he doesn’t use general anesthesia when he implants the Amplatzer patch. I assume, though, that I’ll have a local anesthetic to numb my legs, which is what I’m worried about.
All in all, it was a good visit. He even scheduled me for the heart surgery: Halloween! :) I’m impressed that they’re moving so fast. I mean, it’s not THAT fast, but they saw me the same week we found out about the PFO and they’re doing a TEE merely one week later. I feel like they’re taking me seriously. Yay!!! And yay for getting rid of this dumb PFO!!!
After that appointment, I was exhausted, but Mom (she’s visiting while Ben’s in SC for his high school reunion) drove me over to CU, where I dropped my class. It sucks because I really thought I could do it; however, I’m three weeks behind on the reading, there’s a paper due that I haven’t even started, etc. … it just isn’t working out. And now, with this heart stuff, I’m missing more classes. So … now I just have paperwork left. I’d like my tuition back, but I missed the deadline by one day (ONE DAY!), so now I need to submit doctor’s notes. Ahhh … doctor’s notes. At least I’ve got a good excuse. :)
My list of medical appointments just seems to grow and grow. Yesterday I had neuropsych testing. It was OK, but VERY tiring. On Wednesday, I had therapy. Monday? A TEE. If I’m awake enough (anesthesia takes a while to wear off on me), therapy on Tuesday. And Wednesday. Fun! ;)
This morning, Ben drove me down to Boulder to undergo another test — a TCD, or transcranial doppler. I didn’t know what it would entail except that “it wouldn’t hurt”.
Which it didn’t — not really. They put a ring around my head, and then attached two ultrasound receivers to it. (No problems yet; that was painless, except that it was a little tight.) Then they gave me an IV. Boy, that part screws me EVERY TIME. Fortunately, Dr. Fanale found a vein after two tries; however, the tries *hurt*. He poked me, then swiveled the needle around; not as bad as the LAST time I had an IV (for my CAT scan), but painful nonetheless.
Once I was all hooked up, Dr. Fanale extracted a tiny amount of blood through the IV needle, mixed it with saline and water, and then re-injected it. The first time he did it, there was nothing. Then, he had me do a valsalva maneuver; that is, push like I’m having a baby or a really big poo. :) Oh boy — that changed everything. The machine went “BEEP!!!” and the monitor showed large spikes. “Is that a bubble?” I asked. “Oh yes — that’s a BIG bubble.” Apparantly, they normally grade your bubble response based on the graph shown on the computer. “What grade am I?” I asked. “You’re off the scale,” said Dr. Fanale. “We usually count the number of bubbles we see, but there are too many too do that on your scan.”
I was probably beaming at this point. Coolness! Way out there coolness! I wasn’t stressed out about not knowing what caused my strokes (or so I thought), but now … I feel SO much better. I read about a study conducted with cancer patients; they were more anxious waiting for a diagnosis than they were after receiving it, even if it was a terminal diagnosis. I think I understand that now.
A little explanation. Bubbles are significant (i.e. bad) because they mean that bubbles (or clots) in your blood can travel from one side of your heart (the venous side) to the other (the arterial side). Usually, the clots/bubbles get filtered out by your lungs, but a hole allows them to go straight through. The good news is that it’s fixable! Without surgery! Well, it’s minor surgery. They thread a patch up to your heart through your leg.
But, insurance probably won’t cover the procedure :( Apparantly, the FDA hasn’t approved it yet. I could get in on a clinical trial, but I WANT IT FIXED. I want it out of me. Without a PFO (patent forman ovale, the name of the “hole”), I don’t need to be on coumadin (yay!).
However, as Ben so kindly points out, this doesn’t exactly solve the “Why me? Why now?” question. 20% of people have a PFO, and only a lucky few of us get strokes. Why am I so prone to them? Probably because of my birth control pill, Dr. Fanale said, but he can’t be sure. I could get this thing fixed, go off the coumadin, and still have another one. We asked for statistics on this, and he said, “In our office, there are only 8 people like you who’ve had this done.” Apparantly, it’s fairly uncommon — except in young adults with cryptogenic strokes. “I can tell you, though, that I am sure that this is the cause of your strokes.”
He sent me home with the name and number of a cardiologist who specializes in TEE, and who can repair the PFO — and a good feeling that I haven’t had in a long time. I am so grateful for the folks who diagnosed this. Thank you. :)
