Long Story About A Short Doctor's Visit

I prefer to not start my day cursing but that snooze button was asking for it. Going off every 5 minutes after I had a night of waking up every 2 hours. Grrr! I know, I know, it was just doing as I asked it to do. Not like I was going to wake up 2 hours earlier than usual on my own. Amazing how much colder the house is at that time of morning. This also includes the clothes I had laid out the night before and the water I used to brushed my teeth with. Out of the icebox and into the snowdrift. Shivering and hungry is not a good way to start the day. Neither is having a doctor's appointment.

I would have been the grumpiest grumpy girl in the whole land if it weren't for that blasted happy song in my head. I want to stomp around all morning, but instead I'm slightly skipping. I'm cold, hungry, really not wanting to go to the doctor and now I am skipping.

I did warm up, I did eat & my chariot arrived right on time. I should note that Mom was my chariot on this day and getting to my house on time looking all cute meant that she had to get up much earlier in a much colder house. And so we drove to Dallas.

Now I'm not saying I know for a fact that Dallas drivers are trying to kill us, I'm just saying that they sure do aim for you alot at high speeds. Maybe the song in their head is a little less happy. Town just hasn't been the same since Stevie Ray Vaughan died.

We made it to Baylor intact and on time. First stop, waiting room. No matter what time my appointment is at I am never the first patient there. Nowhere close. There are easily 20 other people waiting with me. Some are caregivers but others are trying to avoid a transplant list, on the list or have had their transplant. I am typically the youngest person in the room but today is an exception. I recognized one woman who is about my age and who I know has ph. I briefly saw another younger woman who was obviously having liver problems.

I try to make a little conversation with at least one other person while I am here. A good intention of wanting to be supportive of the stranger next to you can be the last thing that they needed at the time. I have never had a person cry when I made a comment about the weather, but I have been snapped at. I'm sure I have done the same. I do know that no one in that waiting room feels like this is all okay. Our lives have been limited in a way that we were not expecting. Death has been introduced early, but has not taken our hand. In fact, it's still the same game in that we do not know when we will die. All that we know is that the chance of dying from organ failure has increased. Everything else can still be considered chance. That day's random conversation was a nice one and I know we said a prayer for each other.

Now it's time for my echo cardiogram. I have a love/hate relationship with echos. I love chatting with the technician, finding animals in my heart images (there's an owl & a muppet!), feeling all sleepy from listening to my heart and getting good test results. I hate getting poked in every sensitive spot on my ribcage, being all sleepy when I still have another doctor's appointment and worrying that the animals on the screen are showing major heart damage. I also do not like the cold gooey gel they use. Somehow it does not respond to body heat. It seems to only get colder and stickier. Yep, don't like that either.

20 minutes later I'm dressed and taking the escalator down to the next waiting room. My name is called and so begins my favorite part. I go to the back room to have my temperature, blood pressure, oxygen saturation and weight taken. I love the women in this room. One is single, her family is in Marshall, she has a lovely smile and today she wears tye dye. She is also the best phlebotomist. The other woman is married with 2 or 3 small children, her family lives in Mexico and she keeps me motivated on my walk test.

Let the walkin' begin! For 6 minutes I walk up and down a hallway. Original instructions were to walk at a comfortable pace. Took me awhile to figure out that walking faster is a good thing. The farther I am able to walk and still be able to breathe the better the future looks for me. A walk test can be a very quick indicator of the progression of my ph.

My first few walk tests I had trouble not strutting. I also had trouble not stopping to catch my breathe or regain my balance. On this walk test I ruled that hallway. Almost. I did as well as last time, which was pretty great. I really felt like I could have done better but I was too tired. Not sure if it was lack of sleep or lack of medication.

Returned to the back room to have my stats taken again. I say my good-byes to the girls and I'm off to the exam room to wait for my nurse and doctor. Our nurse comes in first to get more information from me. She writes down the quantity of pills that I take daily, my lack of symptoms. Then the appointment takes a turn. This will be my nurse's last month at this hospital. She's taking some time off. I love this woman, truly trust her, and this news is awful to me for completely selfish reasons. She introduces us to our new nurse.

Both of my dietitians stop by for a quick visit. These visits are basically a formality at this point that I still really enjoy. I like both of the women. I also think it's funny that if I talk about eating out a little too often that they think this is fine. But then I have also seen other patients come in eating hand over fist from a plastic bag filled with candy.

My doctor comes in and we review the results of my echo and make plans for future visits. He reviews the notes my nurse has taken and asks me how my medications are doing. I admit that I could take less of one of my pills if I could only remember to take the others when I am supposed to. I apparently believe so much that I am healthy that I forget my pills. Almost everyday more than one is either taken way past the scheduled time or forgotten altogether. I kind of love that this made my doctor happy.

When I first met my heart specialist I was thrown by his optimism. Now I look forward to it. His focus is keeping me doing what I want to be doing. He also makes sure that I am getting the appropriate testing done at the right time. Last year I got too close to needing a lung transplant. I'm pretty much okay with the regular appointments, but it's a little hard for me to stay 100% positive that they will all have a good outcome. I visit my favorite phlebotomist and she does her thing while we chat. Find my favorite nurse for last hugs (and a few tears) and then we're out of there.

I wish I could write that we went directly home. Instead we had lunch and then did some marathon grocery shopping. Doesn't seem to matter how good or bad the appointment went, I seem to always have a slightly manic must keep moving thing going on. When we do finally get home I am exhausted. And yet Karl & I still went out to dinner that night.

It is now Friday. I have been writing on this since the appointment on Tuesday. I had thought that this would be much easier. After all, it did go well. But there are so many emotions that these visits stir up for me. I have learned that it is possible to feel fine and then have test results come back negative. These surprises seem like a betrayal by my body. It's something that I try very hard not to think about. Very difficult to avoid the closer it gets to an appointment. But I also have strong happy anticipating emotions. Maybe this time I will learn that my body has healed itself even more. No matter the news, I always keep my focus on what it is next.

I hope that I have accurately written how I feel at this moment in my life, because somewhere someone is working on the medicine that will help me to cure myself and these visits and everything that goes with them will no longer be routine.

Tonight there's a cool breeze, the tension is gone and all that's left is peaceful, happy and strong. The only thing on my mind are happy thoughts for you and "Everyday in Every Way I Am Getting Better and Better".