Cardiologist

I made a decision a few weeks ago that I would try and see a cardiologist and find a new GP; find someone who knows more about POTS. So, today, I finally had an appointment with the cardiologist.

How it went:

At first, I was not impressed…I waited well over an hour to see him, and was extremely pissed off at that. So pissed that I got up, and told the receptionist that I had somewhere else to be, I couldn’t wait any longer and had every intention of leaving without paying for that appointment. (Ballsy for me; normally I’m a doormat when it comes to doctor’s offices.) The receptionist apologized profusely and had me talk to the office manager, who got me in to see the doctor..who also apologized profusely. He had a patient with an emergency and they were backed up because of it.

While I was waiting, I had told myself, and my boyfriend (who ended up missing class because he came to support me and they were so late) that if this guy didn’t know anything about POTS-which was going to be my first question- we were walking out and I wasn’t going to waste any more of our time.

So, it was my first question to him. He seemed to really know exactly what he was talking about- I was so impressed that my aggravation actually dissolved. (Shocking because I was really pissed off at that point!)

He got a complete history of my condition, and the symptoms I’d experienced. He also found out what testing I’d already had and the results; even calling the hospitals and the doctors I’d seen to get my results while I was there so we could form a specific course of action right then and there.

He asked me if I’d had my hormone levels checked at all, I said no…and he seemed very surprised by that and feels I should definitely have that checked out. Especially because I’ve lost a ton of weight, I can’t get it back up and I’m losing my hair. (Uh…hello, I asked/told the OBGYN that exact thing not two days ago! See, I know my body people!) That impressed both my boyfriend and me because I literally just asked, and was denied, this.

He also asked if I’d been having routine bloodwork for the Florinef, to which I also had to say no. He seemed flat out shocked that my primary doctor refused my requests to check my blood for Florinef effects. (Yep…I asked my GP about it TWICE and he refused.) This doctor thinks that’s flat out WRONG because Florinef needs to be constantly monitored for potassium levels and kidney function. Once again, I was right.

He then gave me a complete physical (he’s also a certified GP), took my pressures in various postures (found out that my blood pressure is still extremely low even though I’m taking medication), and took an EKG before coming up with his plan. He also checked all of my previous tests and results to make sure I wouldn’t have to go through tests again that I don’t need.

His plan:
1. He ordered the following:

• Bloodwork to check for hormone levels, potassium levels, and a whole mess of other stuff. Seriously, the bloodwork order is as long as my arm. I hope I have enough blood in me to be able to complete it all in one shot lol! While it’s a lot, it’s okay; bloodwork is relatively easy and I’d rather they be thorough- something my other doctors don’t seem to care about.

• Cultures to make sure there’s no bacterial issues (there aren’t, but it’s a standard test and has been almost a year since I’ve had one)

• A stress test with echo-cardiogram. (This I’m not looking forward to at all. I had a stress test three years ago and it was absolute hell. Probably because POTS makes you extremely exercise intolerant…I had to stop the test because I could taste blood. But this guy seems to be really caring and, because we know of my condition, he won’t push harder than I say I can safely push myself to do.)

2. He gave me a list of things I can try to do (I’ve done most of them, but it’s worth a shot)

3. He also wants me to try a new drug that’s commonly used with Florinef (a lot of POTS patients require a combination of meds) it’s called Midodrine. I’m going to do some research on it before I use it though, but so far my research on it makes it seem promising. Plus, the side effects seem pretty minimal which always makes me happy. I have to call and see if I should start it before my bloodwork or not though.

Overall feeling:
Honestly? I feel…relieved. I feel like this guy has a pretty good handle on what he’s talking about (which he should because he’s a cardiologist) and I also feel that he has taken my concerns a lot more seriously than my own regular doctors. His disdain at how I’ve been treated previously and anger/irritation that I haven’t been given tests I requested and that I clearly fit the need for makes me feel good about him.

I’m a bit bummed about even more testing. My body is so worn out from it… but, at least he’s taking my concerns seriously and really is listening to me and checking all possible complications. About damn time.

glimmer of light?

After much searching last weekend, I finally had a small miracle happen!

I found a P.O.T.S. specialist right here in my hometown! What are the odds?!

She's done all kinds of research and clinical trials with POTS patients and knows a heck of a lot more than every other doctor in the area. I'll be seeing her on April 19th...so here's hoping she can give me some relief!

Trip stuff

I know, you all have just been on tenterhooks wondering how my trip went right? (kidding!)

To sum it up: much better than I thought!

*Drive down:* I was concerned about my POTS and how the drive would be, and it really turned out to be much better than I could have hoped for. I made it through 18 of the 19 hour trip down without being sick. Only the last hour was very rough, but I think that may have been something that I ate because I felt sick for quite a while and my POTS is usually a quick on/off thing.

~As a side note, when I was in the hospital for my appendix the first time (in December) I wasn't allowed to eat for 48 hours. On the t.v. I saw the commercial for Wendy's 'all natural' new fries about a THOUSAND times. It was torture, and I decided I needed them when I got out. I never had them...until we were on the road. Finally, I got them after 3 months! Unfortunately, they're what made me sick...but at least I got to fulfill that little 'dream' lol!~

*While we were in Florida:* my POTS was perfect. Seriously, I felt better there for four days than I have in over a year. I ate three square meals a day and got up and out every single day. I was able to get up and go when I wanted to, and spend time away from the house. I was also able to eat some things that I normally can't tolerate (that my grandma made and I was too polite to tell her it would normally make me sick) and I wasn't sick once! Not. Once.

Some moments were tough: My grandma is depressed (understandably) and had rough moments, but we got through them. It was definitely weird being in the house without my grandpa. But there were some good moments too. We got my grandma to laugh a bit, and did stuff for her that she needed. She got to tell us stories, and I watched one of her favorite movies with her.

_A funnyish story_: On our second last day there, my boyfriend totally OD'd on coffee. It made him kind of sick and threw his sinuses out of whack. So, that night, he took some actifed and went to bed.
While in bed, he was yelling out, so I went to check on him (we had separate rooms) and when I went to wake him up he said "I want some oodles of noodles! Get me the manager!" then he punched me LOL! Totally by accident, and he was still asleep at the time but I didn't see it coming at all. This is actually why my sister can't take actifed, it gave her nightmares and she would act them out (punch things etc) so it just made me laugh and he will never be taking it again!

*On the way home:* I felt great. Again, until hour 18. Although, this time it was (more or less) my boyfriend's 'fault'. We stopped at the one rest stop and he took forever. He was fine, but it just took him a long time and it gave me a panic attack. One of those full-out ones that I haven't had in a long time. I calmed down as best as I could (thankfully, I can bring myself back from one 99.9% of the time) and we made it home safe and sound.

~He told me he thought about letting me know he might be a while so I wouldn't freak out, and he forgot...and sure enough I freaked lol Does he know me or what?~

(Unfortunately, for him, he got food poisoning for something and has been sick for the last two days since. Fortunately for me, I didn't eat the same thing that made him sick.)

Overall, I'm extremely pleased with how this trip went. I traveled out of my (current) comfort zones for HOURS and did very well; even my boyfriend was impressed. I was able to do what needed to be done and it was a much more pleasant experience than I thought it would be...we even stole away to the world's smallest beach and had a virgin strawberry daiquiri.

What can I say? I'm pleasantly surprised and pleased. :)

*P.S.* It was 75 and sunny every.freaking.day. I was in heaven.

time to get away

The doctors say there's nothing they can do for me at the moment and I just have to wait it out. He refuses to send me for bloodwork even though the FDA has warnings on my medication that it has to be constantly monitored.

I think it's time to find a new doctor.

In the meantime, my boyfriend and I are going to Florida to take care of my grandma and help her finish the plans for my grandpa's funeral

You're kidding me, right?

So…as anyone who’s followed me knows, I’ve had radiating pains in my kidney/groin area ever since my surgery. My boyfriend’s been really freaked out about it because of how severe it’s been and how long it’s lasted. Plus, the doctors aren’t exactly being comforting about what it could be (saying it could be kidney disease).

I had another painful attack this morning while I was talking on the phone to my boyfriend – lucky him! Not.

When we got off the phone, I went about trying to do my normal stuff and my boyfriend has apparently been doing research because it upsets him so much.

What he found:(fragmented, I’m sorry)

“Florinef is known to cause adrenal insufficiency during times of trauma (surgery) and is supposed to be treated post-surgery with another medicine. A sign of adrenal insufficiency is the over excretion of potassium. Kidney disease includes pain that radiates from kidney areas to the groin and legs”

My Reaction: seriously??! WTF!! Florinef is the medicine I take for POTS! I’ve taken it constantly since my surgery! I’ve had low blood potassium because my kidneys are over excreting it….and I’ve had horrible radiating pains!

So…there’s a chance my POTS meds are killing my kidneys?? Just f-ing fabulous.

what a jerk.

another smallish rant (I'm sorry!) 9 hours ago

A few weeks ago, I was told by someone that they felt I was sucky friend for not going out/inviting them out and I deserved to have no friends. (That was the gist of the whole long spiel I received.) Ever since then, it’s really irritated the hell out of me.

Here is a day in my life:

Get up…it some days takes me more than one, or even two, tries to get out of bed. Changing positions trips up my blood pressure and can make me dizzy or nauseous depending on the day.

Get moving…I go downstairs. Again, sometimes it takes more than one try, or I have to take breaks. Once I get downstairs, I choke down my meds (thankfully nowhere near as many or as bad as other people’s) and try to have something to eat. Regardless of what I eat, the act of eating itself (and the food) causes all of the blood in my body to rush to my core to try and digest it. The blood pressure difference makes me immediately nauseous, dizzy, lightheaded and (sometimes) cuts the blood supply off to my extremities making them cold and numb. Any specific food can make it worse, and even just drinking something can set this off. I constantly have to fight my food/drink down and fight to keep it down. Or, occasionally….even sets of bouts of diarrhea. (Pardon the TMI)

Next: I shower. Depending on the temperature of the water, I can have a full out ‘cardiac event’. These events range anywhere from having my heart race, dizziness, blacking out, nausea, and arrhythmia. My heart will skip or miss beats or race out of control. My heart pounds painfully in my chest and I gasp for air. Even a degree or two can make a difference. Afterward, comes the joy of braving the 20+ degree temperature difference getting out of the shower…which changes my blood pressure yet again and it starts all over again. Sometimes, I even have to lay down.

After that, I attempt to do something with my day…I get outside to another large temperature difference, and have another attack. Which, I push through and go to the store. Walking into and around the store is yet another temperature/pressure difference that can set off another attack. It feels like a severe anxiety attack, yet I’m not scared…my hearts just racing, my body sweats, I feel dizzy and go pale. Try on clothes at the mall? Forget it. The movements of my body to pull the clothes on and off set off another event. I sit gasping in the clothes changing stall waiting for it to pass enough to get to my car.

I go home after just a brief hour or two out of the house. It’s time for lunch…(see breakfast’s nightmare).

I try to clean the house…see movement nightmare.

It’s time for dinner…see breakfast’s and lunch’s nightmare. Only it seems to be worse at night…because my body is weakened from the ten attacks I’ve had so far.

Then it’s time to choke down more pills and head to bed…

Rest and relaxation right?

So you would think…except that at night, you relax and you blood pressure lowers. So, I’ll drift off to dream land, only to wake up in the middle of the night once again dizzy, with heart pounding, and gasping for air because my blood pressure has dropped too far. I’m too relaxed. I get maybe four or five fractured hours of sleep. Sometimes I wake up to frightened to even go back to sleep.

Yet, one thing I’m proud of is that I don’t ask for anything from anybody. I don’t want pity…so I don’t complain in ‘real life’. (instead, you poor 43Thingers have to hear about it- I’m sorry again!) I don’t want anyone to feel sorry for me…I don’t even ask for compassion. But I do ask for a little bit of credit or understanding. If you don’t understand, or have a problem…ask. When you don’t bother to ask what’s going on, how can you even feel you have any right to attack someone over something like this?

This will make me sounds like a terrible person, and I apologize ahead of time…but if I had cancer or a heart attack, you (the friend) wouldn’t be saying this to me. But because I have an ‘invisible illness’ and look fine on the outside you don’t even think twice.

So dear ‘friend’, you’re right. I haven’t called or written to check in…yet neither have you. I haven’t invited anyone to go out because I don’t go out. I don’t invite anyone over because it’s humiliating to me to be so sick in front of other people. If you had the stomach flu would you invite a whole bunch of people over to experience it? Maybe you would know some of this if you made any sort of effort once you knew I was sick.

Maybe trying to take care of my own life, and trying not to lose my life, is selfish. How dare I think of myself at this point in time instead of calling to find out about the ‘nothing new’ that’s going on in your life? Maybe I am the bad friend.