Confessions of a Starbucks addict

On Thursday I had my Exercise Tolerance Test along with another Pulmonary Function Test. Since I don't drive in Seattle, I took the Metro bus system...boy does that bring back memories of my teenage years!

So I get to my appointment and get settled in for a long few hours. First, the pulmo tech numbed up my wrist so that he could draw blood for an arterial blood gas test. That was the most interesting test I've gone through thus far. It was amazing to see how really forceful your arterial blood can be! He then left the room and came back when the results were back. The only thing "off" on the test was my carbon monoxide test.

They then sat me down to do the PFT. That went well, but it showed the same numbers as my test from back in April. So I still have a severely low DLCO (my lungs' ability to exchange oxygen and carbon monoxide out of the air and into my blood stream) readings, and a restrictive pattern in my lungs as well. They did a bit of a different test on this PFT. They had me panting into a tube and then stopped the tube from moving any air. This showed whether or not my lungs got tired while doing this over and over or not. It showed that they didn't, which definitively proved that I don't have Myasthenia Gravis. (Which I knew anyway because they drew blood to find out if I had the antibodies for that.)

After a quick site change for my insulin pump's infusion set, because the doctor needed to use my left arm for the blood pressure cuff, I got situated on the stationary bike for the ETT. Basically what that entailed was being hooked up to the blood pressure cuff as well as a bunch of ECG leads, while riding a stationary bike as it progressively puts out more resistance. I did pretty well on the bike...I was told that my goal was 10 to 15 minutes on the bike for enough data to be gathered. I did 13 minutes 34 seconds. I just couldn't take it anymore. I was getting dizzy from breathing so badly. While I was on the bike both the doctor and the pulmo tech were readjusting my ECG leads. Apparently they thought that from the readings they were seeing were really wacky (more on this later). Eventually they got them into the correct positions. The doctor and the pulmo tech let me go after a bit of a recovery and making sure that my arterial stick was completely healed.

On Friday I had to go back to the UWMC for my results. I saw "fellow" Dr. Pulmo this time. She's pretty nice, and rather smart. :) When she walked into the room, she immediately asked me if everything was the same, better or worse. I answered that it was a little worse and that the new shoulder pain I was having was a real bummer. It only happens when I'm really out of breath, but it's really a pain that I'd rather not have. She said that it was interesting that I'd mentioned that because it goes along with one of the two possible diagnoses that she wanted to talk with me about (she'd get to that later though). So, she talks about my labs being all negative, talked about the CO in my blood, talked about the fact that I don't have Myasthenia Gravis like they first suspected, etc. She then told me that I am no longer a pulmonology patient...! I looked at her quizzically. She went on to say that the ETT proved that I do not have a problem with my lungs. What I do have is a problem with my heart. It'd be easy for her to refer me to a cardiologist and tell them I need a right heart catheterization, but because this could also be a problem with the left heart, to ask a cardio to do a left heart cath as well would make that cardio tell her to get out of his profession. Basically meaning that she could order both, but a cardiologist is going to want to see me first before he even considers doing the left heart cath. So, ugh...I've got to wait some more before they can figure anything out. She told me that she put on the referral that my appointment was urgent and that I needed to be seen within 14 days. Hopefully they'll call me on Monday to schedule the appointment.

So what are the two diseases that I could possibly have? Well, there's the obvious Primary Pulmonary Hypertension, and then there's the other... Congenital Coronary Artery Disease. Now, because I'm under 45 and because Coronary Heart Disease doesn't happen in women under 45 without some underlying reason (which she thinks in my case is my high clotting factor and/or high platelet levels), then it's congenital...meaning I was born with a ticking time bomb. The only way to diagnose the CAD is to do a left heart cath. So that's where I'm at. After all of the tests and all of the crap I've gone through, it's down to one of two diagnoses...funny that both of them have acronyms. Troy loves acronyms. ;-D

Dr. Pulmo (the fellow) was very reassuring that I'll be all right, that she didn't want to scare me but when I practically forced her to tell me why I needed a cardiologist, she knew that I was the type who needed to know everything. I like doctors who don't pussyfoot around you. Give me the facts, give me straight answers. I hate doctors that aren't true to their patients. I like this Dr. Pulmo very much. :D

I wish that I had better news. I'm taking it kinda hard today. I was fine yesterday, after the appointment, when the bomb was dropped. In fact, as I was leaving my appointment, Erika called me. She's a friend that I met online, back when I was pregnant with Kaycee. She was pregnant with her twins at the time. She moved to Seattle a couple of years ago, and happens to work at the UW. We met outside and went to have some coffee. At least she didn't get me completely lost this time! (Last time, she had me going through a maze and I was a few minutes late to my appointment, which is funny now, but then I was completely out of breath and in some distress...) We had a good chat. I told her a funny stalker story, which I hope made her day a little brighter. :)

Now, I've been quite melancholy all day. I'm realizing that with either diagnosis, my life is going to drastically be altered. I'm not sure I'm ready for those changes. Being a Type 1 Diabetic isn't much of a change from daily life. Yes, you either give yourself shots or wear a pump and bolus for your meals...but really, it's not that difficult. As long as you keep everything consistent, for the most part, you'll be consistent with your glucose numbers. Sure I spike up sometimes, and have lows quite often, but I attribute that to my being stupid in estimating the number of carbs I'm taking in. I don't have to follow a strict "no sugars, low carbs" diet like a Type 2 does, so it's really not that different than being "normal". However, with either of the two diagnoses, I'll have to alter my lifestyle like crazy. Exercise will be different, food intake will be different, lifespan will be different, I will be different.

I'm really not in a good place right now. I know that other people are fighting much worse diseases, but honestly when it happens to you, you feel like the only person going through it as well as feeling like you've got the worst problem in the world.