I was a bit freaked about today’s doctor’s appointments. After last month, when I told my pulmonologist that I had pain in my chest when I was doing the 6-minute walk text, they shuffled me down to Cardiology. I was bodily taken to another office because they can’t do any more tests on my lungs until they get an all clear on the heart.
A heart ultrasound and a stress test later, and we know how that went. ( See the previous post.) I’m back at University Of Texas medical school to get the results. The cardiologist goes through the many tests and gives me an all-clear for most of them. He does say my cholesterol is a little high, but they can give me drugs for that. I said, No thank you. I ask him how high is a “little high” and I tell him I’ll manage it with diet. He asks me if he gave me a heart-healthy diet plan. “Doctor, I have been doing this for six months long before this came up.”I’m probably eating the healthiest of any of his patients.
I must tell a back story… Long ago, 33 years to be exact I gave birth to a wonderful baby girl. I saw my gynecologist in the hall the next day, and I was walking holding on to the railing. I asked him when I could expect the dizziness and shortness of breath to go away. He took my pulse immediately and then it was a whirlwind of tests on my heart. Their thought was that I might have a hole in my heart. They did a heart ultrasound. As I remember it, the ultrasound showed no hole. I was told to frequent a cardiologist for the heart murmur, and that was it. Three months later that cardiologist gave me an all clear.
So the cardiologist last month kept asking, “Are you sure there is no hole in your heart?”
I did get a clean bill of health for everything else but… There apparently is a hole in my heart. He thought it was there since my daughter’s birth, but I’m puzzled because I recall them saying I was fine back then.
A hole in the septum between the heart’s two upper chambers is called an atrial septal defect (ASD). The tests also showed a slight enlargement of these chambers. So, I’m back to more testing. This time they are going to do an MRI on my heart. They want to see how big the hole is. I should have asked, do they have some gauge that lets them know, this size hole is o.k. But hey, you have gone over, and the next size up is not? Does it get bigger?
If it is too big, they will have to do heart surgery. They don’t open up your chest, but instead, they go through your groin. This is not sounding fun.
The next appointment is at the Pulmonologist down the hall.
The pulmonologist is not that concerned about my hole in my heart. Apparently whatever tests they wanted to do, but could not do because of other heart problems they can do with a hole in my heart. The fellow sees me first and tells me that the next test will be a bronchoscopy. He explains that they will go through my nose, into my lungs and go through each area push water in there and suck it up. “Hey I say, from all that I have heard putting water in the lungs is not a good thing.” He assures me it is fine. They will admit me to the bronco suites. “You make it sound like a cool vacation,” I said envisioning rooms decorated with dinosaurs. He tells me it is a very easy procedure. “I have done 600 of these; your doctor has done far more than that. You will not remember anything and be very tired for a day or so after.
He says the sleep study showed mild sleep apnea and he is not worried about it.
I ask him, “So idiopathic interstitial lung disease is off the table right? I thought the word idiopathic meant that you didn’t know what caused it.”
“True.” he says “but idiopathic presents itself differently.” This is when he takes me to my CT scan and shows me the white film in parts of my lungs as compared to idiopathic interstitial lung disease, which I see has more of a popcorn appearance. I’m immediately relieved.
I tell the doctor I did give up my feather pillow. I hope he will encourage me with praise. “Your feather pillow did not cause this.”
“What? How do you know?” I think longingly of my sleeping comfort.
“Because we did a blood test for that.”
So apparently I gave up my feather pillow for nothing. I’m not going to fuss about it, after posting and hearing how many people had breathing problems from using feather pillows, I already ordered some new ones. I won’t be taking any chances. I loved my feather pillow, but it is not to die for.
I tell him I’m walking around more without my oxygen, but the moment I get busy, I need it. He said this is a good sign. It is also more telling of the heart. Apparently, if you are short of breath all the time it is your lungs, if you are short of breath on exertion it is most likely your heart.
The doctor comes in and switches things up. I guess this teaching hospital is a good thing. You get two opinions. He says he consulted with the cardiologist and they will schedule the MRI, in the meantime he wants to see another CT scan before the bronchoscope. He wants to see if there is any improvement. I chime in. “Wait? This could improve? I thought this was a progressive disease?” The doctor says if there was infection it could have been that. I do have Interstitial lung disease, but he wants to see a CT scan before the bronchoscope.
Then he says, “you do need a CPAP machine. ”
I looked at him and said.” I thought it was mild?”
He insists, and I chime in.
“Let’s look at this. I have had several procedures done in the last week. You are asking me to do another CT scan, and then possibly a bronchoscopy. Meanwhile, I have a heart MRI, and possibly heart surgery ahead of me. I pay a good portion of a lot of these tests and getting measured for a CPAP machine means another sleep study and $300. So, if you had to pick which tests were a priority….”
” We will wait on the CPAP.” He concedes.
How am I supposed to feel? I don’t know. I just keep doing the next thing praying, working on my diet and exercise and moving forward. I did call my daughter’s dad. You get the Cupie Doll I told him, I just got back from the doctor. He chimes in. “You have a hole in your heart. I knew it. ”
I do know I have less breath and less deep breath. I think that is the ILD. But if I can function that way, watching out for bronchitis, etc. that will set me back and have my heart fixed so that I can do more without exhaustion, I think that will be good.
Feeling hopeful,
Pusche