Thank you, by the way, to whoever left me such a kind “good luck” comment on my blog!
The Marathon:
First, once I was finally called back into the room (a half hour late by the way) I had to put on the hospital gown and lay down on my side while they took a sonogram of my heart. Overall, it wasn’t that bad…just uncomfortable (as they’re jamming the sonogram took into your rib cage) and it took forever. Seriously. I was laying there being sonogrammed for at least 45 minutes.
Oh, and halfway through this sonogram, I started getting horrible abdomen pains. Let’s just say there was a late, and unwelcome (though better late than never lol), visitor. Sorry for the TMI but it’s relevant to the story.
Then, the very sweet tech told me that I would be walking/running on a treadmill to get my heart rate up to the level they’re looking for (stress test part), and then I’d have about 60 seconds to get back on the table and lay in the exact same position so I could get another sonogram after the stress test.
Something I’m realllllly not feeling now if you know what I mean
She also was kind enough to warn me that she would have to rip my paper hospital gown open and not to worry that she’s gone crazy or something lol
So, she gets me all hooked up and the actual cardiologist himself comes in to perform my stress test. I get on the treadmill and start walking. Within a minute, I’m exhausted and out of breath. By 2 minutes 30 seconds, and on “level three”, my stress test is over, I’ve gone above the “target” heart rate and I’m gasping for air.
As I’m doing this, the cardiologist tells me that my exercise tolerance is incredibly low for someone my age (to which I so desperately wanted to reply “no shit Sherlock”...one of the biggest signs of POTS is exercise intolerance) and that I should be doing cardio 4-5 times per week. Okay buddy, if I could do THAT I would. Do you think I like wheezing after a 2.5 minutes power walk? I mean come on, give me a little credit. I’m not doing this for fun. He basically implied I was lazy and that if I just exercised I’d be fine-again, if I could do that I would be doing it.
He also got really snarky with me for two things:
1. not trying the Midodrine that he prescribed. (The POTS specialist thought that there was something we should try first, and, if you recall, he didn’t answer my phone calls asking him whether I should wait until my bloodwork was complete or not to start it; so my bloodwork wouldn’t be thrown off. I left three messages that he never called back about. Not my fault he didn’t answer me and I played it safe.
and
2. not bringing in my blood pressure logs (I had no idea I would actually see him and not just a tech, and he had told me to bring them to my follow up, so I left them at home) and for not getting my bloodwork done. WHAT? I almost FREAKED. I still have the bruises in my arms from his vials and vials of bloodwork- don’t you dare tell me I didn’t do it. (Turns out the lab forgot to send the results. When they received them, did I get an apology? Of course not.) He actually had the nerve to imply that I’m not even trying to get better. “You can’t better if you’re not even going to bother to try”
Now, to flop on the table in the right position in 60 seconds or less. Which, would be easy enough if the table wasn’t 15-20 feet from the treadmill. (Not that that’s a large distance…but it is when you have 60 seconds to get there and strike the right pose or you’re doing the whole damn thing all over again!)
Next came another heart echo. This one was faster though; about twenty minutes. Not too bad. The cardiologist glanced at it for a millisecond and said to me (as I’m trying not to pass out) “you have an abnormality in one of your heart valves”(I’ll get to that later)
When the tech took the ports off of me and they left horrible welts :(
Then the tech told me she was done with me! I was glad. All I wanted at that point was to go home, take quite a bit of Motrin, cuddle my heating pad and crash.
Little did I know that only she was done with me; I wasn’t done overall.
I was shuffled off to another room to get a doppler of my carotid arteries, which took at least another half hour. Then that tech said she was done with me. Hallelujah right?! Nope!
Next came getting strapped to a Holter monitor to check my heart rhythm for the next 24 hours. I was also given instructions about it; no showering and use the little ‘symptom log’ they gave me to record what I was doing when I felt symptomatic, and what times they occurred.
Then, and only then, I could go home.
Funny side story: On the way home, this crazy garbitch is riding my tail the whole way. So I tap my brakes to get her to back off. What does she do? Guns it past me going at least 70 in a 35 over a double yellow line. No doubt my heart rate spiked due to my anger. Can’t wait to see what they say about that lol
So, exhausted, I got home, took some motrin to nurse the pain from my special visitor and relaxed for an hour or two. Then I had to do normal activities to show my “average day” on the heart monitor, but beyond that I was too tired, sore, and icky feeling, to do anything else.
That night I had a horrible night’s sleep with nightmares involving my heart monitor and lovely sleep apnea that I woke up gasping for air from. Wednesday, I took the monitor back. Then took the above below of my rib cage to show the reaction I had to them/ welts I got from them.
Almost three days later they’re still there!
I also wanted to talk to them about something that was written on the “diagnosis” sheet that I’d gotten the day before. It said that one of my diagnoses was anorexia. What the hell?! We didn’t talk about anorexia, and he’s not exactly equipped to evaluate my mental state/relationship with food in order to make that particular judgement call. The nurse said it’s from my BMI (which is in anorexia range) but I have a problem with that being on my record now. I don’t have the body image issues that go with anorexia, and now if anyone sees that on my record they’ll assume that I do. I have an issue with that. It’s like when I was misdiagnosed with an anxiety disorder; it took me years to get someone to actually believe something was wrong. I kept getting the “well I see you have an anxiety disorder…it’s probably just that” speech. Now, I’ll get the “well I see you’re an anorexic…” speech. Not cool and definitely something I’m going to bring up during my follow up.
Diagnosis?:
After my stress test was done, the cardiologist looked at my sonograms and said that my heart looks good, but that one of my valves is abnormal. I have what’s called a Mitral Valve Prolapse where my mitral valve doesn’t close all of the way. It occurs in about 5% of the population. (Could be as high as 20% but it’s rarely looked for/into)
(Here is a fantastic article from the Mayo Clinic on what MVP is. Another link to the actual Mayo Clinic site version is here.)
There are some medications that are used to treat MVP. They are blood thinners and beta blockers. Neither of which I am a candidate for as they lower blood pressure and that could literally stop my heart.
The other options are to have the valve fixed, or replaced entirely. Now, given my history of slipping into a coma during one procedure, and a poor track record with surgery…I’m sure as hell not having open heart surgery unless I would die without it.
My boyfriend feels differently, he thinks it’s at least something to consider and see what the doctors feel about it…because right now my quality of life is pretty sucky, so it might be worth at least thinking about…don’t be too hard on him, I’m beyond shocked that he feels that way. He was there when I slipped into a coma. He was there holding my hand until I woke up. I saw him bawling his eyes out, and happy tears streaming down his face. I heard him tell me he wasn’t ever going to let me do anything like that ever again. So for him to be thinking about this and having that opinion is extremely difficult for him.
The POTS Connection:
In case you were wondering (as I was) what possible connection there is between MVP and POTS, I looked it up last night and found a study done on POTS by a doctor who found that 46-50% of POTS patients may have MVP. (It was done in young teens, but it’s an interesting figure nonetheless)
I originally thought (after doing some reading on MVP’s symptoms) that this could be the root cause of my POTS, but I’ve since ruled that out. MVP is something you’re born with; and while I’ve had some symptoms my whole life (like the arrhythmia) I haven’t been debilitatingly sick my whole life; just the last couple of years. It’s infinitely close to being impossible that it worked the other way; where POTS caused MVP.
Also included in the article with the stat correlating MVP and POTS, was a list of “diagnostic features of POTS” that show how it appears during various testing. Along with the fact about MVP, there is also: normal results in bloodwork (adrenal and thyroid glands, urinalysis, complete blood cell count, and electrolytes), normal ekg/stress test except for periods of tachycardia, and positive tilt table results (HR spike of 30bpm or more, provocation of at least 3 symptoms of orthostatic tolerance, HR of 120bpm or greater within 5 minutes).
check, check, check and check.
If anything this definitely seals the deal that I have POTS. Which, in a way is a relief to be completely positive in knowing that that’s my condition and that’s what I need to focus on; instead of wondering if they got it wrong and I’ve wasted the last year.
My boyfriend is excited to see what the POTS specialist has to say about all of this when I go next week (Tuesday). I made sure to have all of these results forwarded to her as well. The eternal optimist, he thinks this is going to lead to a definitive treatment plan.
I’m also very curious to see what she says about my test for Gastroparesis, and when I tell her about my hand turning purple.
Other Results and Concerns About O.B.
As for the other results, I don’t have them yet. This is all just a quick observation on his part. I’ll find out about the carotid dopplers and Holter monitor when I go back for my follow up in June.
My one concern is this: OB. OB= Ordinary Bitchgicles. (Yeah, I add ‘gicles’ to the ends of most of my swear words, I think it makes them less mean and makes me seem less crass. Whatever, don’t judge me) OB is the nickname that I’ve given to my “special friend”/”visitor” who came during my test. (Why OB? Because ‘she’ is NOT special, and certainly not friendly.)
It concerns me because during that week, a woman’s blood pressure is naturally higher. In a POTS patient, that generally means most POTS symptoms are better, which would skew the test and not give an accurate representation of how I feel on a normal day-to-day basis. While I get migraines, cramps and nausea, overall my strength and endurance are much better. This is something I have to discuss during my follow up also. I would hate for all of this to have been for nothing. (We found MVP but you know what I mean…I don’t want to redo the rest of it because of OB)
Another irritation that I have, is that on my ‘diagnosis sheet’ there’s a line saying that he told me to start physical therapy training- I’m going to call “bull shit” on that. I’ve never heard that before from him ever and I’m definitely going to ask him about that. If there was some sort of physical therapy I should be trying/doing, it would have been nice to know that and I would have tried it.
Bottom Lines/General Thoughts
The day was long, and hard and exhausting…leading to me finding out I have MVP, a heart valve deformity that’s not lethal but is affecting my quality of life. Oh, and I now have welts that make me look like I’ve been tortured lol
I’m not entirely sure I’m going to go back to this doctor. His bedside manner leaves a lot to be desired. I don’t appreciate being told that I’m not doing anything to get better; which is not true at all. Plus, I don’t like how he puts things on those “diagnosis” sheets that he didn’t discuss with me (that he claims he did) and that are not true (like anorexia).
However, whether I continue to see him or not, any cardiologist would do these exact same tests, so I’m glad I did them. It’s also nice to have confirmation that my heart’s not just going to give out. Plus it will give the POTS specialist more information.
The bummer is that it’s another thing that’s causing me to feel sucky and that there’s no relatively safe treatment for it. (and none safe for me at all) Yay two incurable, not treatable conditions! (sarcasm)
I’m still doing research about MVPS and am working on processing it.
I could write more about how I’m feeling and what I think; but I’m exhausted and, I’m sure you’ll agree, this is quite long enough.
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