Journey to Planet Gallifrey

I went to the doctor with my friend Sam today, and he was the same one I saw for my heart last year. He remembered me and what he’d put me on. He said they have a different medical director now than they had last year, and he’s going to talk to him for me and see if he knows anyone that can do my open heart surgery pro-bono. He is such a good doctor. He was the first doctor that ever believed me and actually tried to help. Now he’s still helping me and I’m not even his patient anymore.

I’ve been thinking…

After my surgery, fucking ironically as hell, I’ll probably be eligible for insurance, because I’ll be “cured.” Not straight after, because I imagine the recovery and the subsequent cardio visits will count as “pre-existing” as well, but after I’m fully recovered… I hate the medical system. I really do.

Also, um, just an update. Dr. Mendeloff’s office finally called me back. I have an appointment on February 24 at 2 PM in Dallas at Medical City. I’m going back to where I started, which I also find ironic. Jennifer, the nurse I talked to on the phone who made my appointment, knows Dr. Leonard at Children’s Hospital, who did my surgery at 15 months, and she said they should have no problem getting my records from him. She said that my first appointment will likely be Dr. Mendeloff going over the surgery in general, telling me what will be done and how. He’s going to be my surgeon. At least that was what I understood from the conversation we had.

I absolutely will have to have open heart surgery. Not an angioplasty. That much was established today. But Dr. Joshi said that we can put it off for a while. He’s referring me to an adult congenital cardiologist who actually specializes in stuff like I have, and this new doctor is going to help me figure out when I actually need to have the surgery done.

I had to have another echo done today, because they didn’t get enough images on the last one, but this one was free because it was their fault. :D

I also have infundibular pulmonary stenosis, which is apparently the better of the options… I don’t know, I googled it and it sounds pretty shitty, but they [Julie, the echo tech and Dr. Joshi) said that it was “good” (not GOOD, it still means stuff is wrong, but you know…).

So yeah.

He also put me on a prescription for the angina (chest pain), but it was going to cost like $250, and I wasn’t down for that at all, so the pharmacy faxed them to see if he could change it to something cheaper… haha. I’ll find out on Monday.

So yeah. It was kind of bitter sweet. I have to have open heart surgery, but it’s not quite as dire as I thought it was. Still gonna have to happen pretty soon, but not IMMEDIATELY. More time for fundraisers and things.

I go back to Dr. Joshi on April 5, and I go to the new cardiologist whenever he can fit me in.

I didn’t really get any details. Those will be coming next Friday at my follow-up with Dr. Joshi.

The ultrasound tech told me that it’s definitely my pulmonary valve that’s all screwy. (We listened to it, isolated specifically, after we’d listened to the others, which sounded relatively normal, and since it’s mechanical, I sounded a bit like a robot. I’m convinced I am the Bionic Woman.) 

That’s really all I got.

ALTHOUGH, she did tell me that my heart is strong. It’s stronger than I thought it was. It’s pumping blood fairly efficiently in and out (it’s in the “safe range”, as she called it), and I am not having heart failure, according to her. It could still lead to that very quickly if it’s not fixed, but I’m good on that end right now. I still have to talk to Dr. Joshi about the results, obviously, but the ultrasound tech sounded like she knew what she was talking about.

But she didn’t really tell me anything else that was important. I just know it’s definitely, absolutely the pulmonary valve, my heart is strong, and I am not going into heart failure yet.

I’m nervous. This is one test that they could find something substantial with. That scares me because then it’ll be real, but it also makes me happy because then it’ll be real.

My feelings are so bipolar on this whole situation. I’ve been waiting so long that I’m just glad I’m finally being validated, but all of it is also really scary.

First of all, here’s this in case you missed it: http://the-vashtanerada.tumblr.com/post/16586607583/progress-and-a-semi-diagnosis

So. Alright, let me just say that I really liked the cardiologist. He was really nice, and he answered my questions (even though I froze and only asked one because that’s all I could think of). 

Basically, I’m dumbfounded at everyone else. Like, I know that the other doctors weren’t cardiologists, but damn. He looked at my giant symptoms list, I had another EKG done, and he listened to my chest and back with his stethoscope, and BAM!, diagnosis (or part of one, anyway; still have to do the echo to confirm). It took him like ten minutes for all of this, and then he was spouting out problems that he noticed left and right.

The thing about my lungs that he was talking about that I kind of missed, because I was too focused on “your heart valve sucks” (paraphrasing of course), I THINK, after reading a little, is that they’re being compressed because they’re not getting enough oxygen, and that’s why I have trouble breathing.

So, anyway, I’m going to wear the holter monitor for 24-hours on January 31 (and I can’t shower with it on D:). Then, on February 3, I get the echo done so they can actually see the valves (mainly the pulmonary, because he thinks that’s the one that’s being an asshole). My follow up with Dr. Joshi is February 10.

He also said that I may need to see a specialist in the future instead of him, because he doesn’t necessarily deal with adult congenital heart defects, but he’s going to go ahead and do the preliminary testing/diagnosis so we can get it out of the way.

So, to answer the most pressing question (which was the one question that I could actually think to ask him): Yes, I definitely do have to have surgery if it’s what he thinks it is, whether it’s replacing the valve or ballooning the valve, but he sounded pretty confident that he knew what he was talking about. So yes.

He thinks it’s my pulmonary valve but he doesn’t know yet if it needs to be replaced or if they need to balloon it. Something about my lungs, and I have a “really bad heart murmur.” I have to wear a holter monitor on Jan 31, get an echo on Feb. 3, and I have a follow up on Feb. 10.

But he did say that it’s being caused by the ToF.

It doesn’t even really seem real that I’m going to see a cardiologist tomorrow. So many people take things like that for granted, and I’ve been waiting for years. I still don’t have enough money to have surgery, but I have enough to get started, and that’s more than I was able to do a year; two years; five years ago. I hope this doctor can help me. I need someone to finally help me, and I really need someone to be an advocate for me. Dr. Laing has helped with that part a little, but I need someone who will actually care about my well-being and can actually do something about it. 

I don’t know how much money to transfer from my savings to my checking for tomorrow. I don’t know what kind of bill I’ll be looking at for one visit. See, Jarrod has insurance and when he goes to Dr. Laing’s, he only has to pay $15 co-pay. I had to pay $197, but I also had an EKG done, so it was a little more. Still, that’s a big difference, and I don’t know how to gauge it.

I’m nervous. For a lot of reasons. Mostly because I always get super, super nervous before doctor visits. And I’m scared. I don’t know how to be anything but sick now, and the fact that I may be able to get better should make me happy — and it does — but it also terrifies me. I don’t understand it, but that’s how I feel.

Now that I can get on Tumblr on my laptop instead of my phone, I’ll post a more in-depth update.

First of all, thank you for ALL of the positive vibes on the stuff that I posted today. I love all of you so much. <33 If I would’ve been on here instead of on my phone, I would have replied individually, but I guess now it’s probably easier to lump it all together with one big update/post thing.

I honestly originally went to Dr. Laing with the sole intention of getting put on anti-depressants. I was going to talk to her about my heart problems, but it wasn’t my number one priority, because of the absolute lack of help from other general physicians in the past. 

Anyway, so I got in there, and the nurse was asking me questions, and she asked when the last time I had an EKG was, and I told her that it was April 2011 (when I went to the ER), so she told me to strip down from the waist up. She came back in with an EKG machine.

She did the rest of her stuff and then Dr. Laing came in. She was asking me questions about my heart, because I led with that rather than the depression. Then she came upon the print out from the EKG and she went, “Damn.” So that didn’t sound good. She said that my resting heart rate was over 100 (and it’s supposed to be around 70-ish). So that’s when she told me that I needed to “run to a cardiologist as fast as I could.”

She said that she thinks that it might be scar tissue from my surgery that’s causing all my problems. And that contradicts what the doctor at One Medical said, what my pediatrician said (I went back to him when I was about 18 because he was the only one who would see me at the time), and it sort of contradicts with what my old cardiologist had told my parents long, long ago. But she admitted, you know, that she didn’t really know, because she isn’t a cardiologist. So I’m going to get a definitive answer as soon as I can get an appointment with one. Either way, though, if it’s the valve or if it’s the scar tissue, I’m going to have to have surgery.

She prescribed me Toprol, which is a beta blocker, for my heart.

She also put me on 20 mg of Celexa for the depression, even though I didn’t really get to talk about it very much. (She basically said that we’d get to everything else later, because it wasn’t going to kill me.)

Then, just about an hour or so ago, I was on my way to Walmart, because my mom is working late tonight and I was going to tell her about the appointment, and my phone rang while I was driving. I didn’t answer, but I listened to the voicemail, and it was Dr. Laing’s receptionist calling to tell me that Dr. Laing had found a cardiologist who would see me without insurance and for me to call him and make an appointment. So I (hopefully) have a cardiologist now, too.

So, today was pretty fucking productive overall. 

Also, just because I think it should be said, Dr. Laing has purple streaks in her hair and quotes Robin Williams. Okay.

fuckyeahhope:

Hey guys!

We’re holding an online campaign to raise at least $4,000 in 24 hours! This will get the donations to reach over $15,000! The campaign will start on Monday, January 23 at 8:00 AM and the donations will be tallied up on the morning of January 24 to see if the goal was reached. Donations will be accepted on the GiveForward page (http://giveforward.com/savekelseysheart). If you are unfamiliar with the fundraiser, you can go to the GiveForward page for more information or http://the-vashtanerada.tumblr.com.

Help spread the word; any form of support will help. Post the link on Facebook, send out emails, use social media, and, of course, word of mouth helps, too!

Thank you for helping, it is truly appreciated.

Sincerely, 

Kelsey Milner