Follow-up CT Scanby Angie

19 Jun 2008
9:06 pm

A couple of weeks after my CT Scan in February, I got a call from Dr. Murphy to inform me of the results:  No major clots, but there is some clotting in the artificial conduit that was added to my circulatory plumbing last May.  He is certain now that I need to begin a Coumadin regimen – I expect to start after I meet with him in July.  Interestingly, the CT scan also identified two little “swollen patches” on the surface of my heart that completely baffle Dr. Murphy and his colleagues.  They don’t think the spots are problematic, but he wanted a follow-up CT scan in a couple of months to check on them again – if they’re changing at all, there might cause for concern.

So!  Today was the fateful day and I made my way once again to LPCH: to the eternally long waiting room in the basement, and to the tiny, hot unit that houses the CT machine right in the midst of a bunch of construction.  In fact, the construction cramped things to such a degree that the nurse who placed the IV in my ankle had to sit on the floor to do so, while I sat in a rolling desk chair and tried to hold still.  Luckily, it only too two pokes this time.  Once the IV was in, I had to lie flat on the scanning table, be hooked up to an EKG machine, and hold my breath for 7-, 15-, and 20-second intervals, as the radiologist directed.  When they injected the dye – oh, my stars!  It’s hard to describe…  I felt overwhelmingly hot and suffocated, but the sensation was all coming from the inside out.  It was very bizzare.  In any case, I lived through it!

Now it’s back to waiting for results.  Blah.

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Meeting my NEW new Cardiologist…finallyby Angie

11 Jan 2008
2:01 pm

So, rather than going to Dr. Anne Dubin (as Dr. Etheridge receommended), I have been referred to Dr. Daniel Murphy of the Stanford Adult Congenital Cardiology Clinic. Initially, being referred to a new doctor all over again was discouraging. We were worried (as faithful readers of past blog posts will recall) that our insurance was going to put up a fuss since, of course, Stanford is out of network for our medical group. I was not looking forward to more weeks of phone calls, forms, and letters in order to get another new doctor approved. I decided, before starting back at the beginning, to try sending an email to the Nurse Practitioner/Office Manager for the Clinic explaining my situation. Well, I went out on a limb and tried something new and different and – wonder of wonders, miracle of miracles – we found a friend with the best news we could get: Andrea wrote me back within two days and said,

“The American College of Cardiology has specific recommendations regarding the care of Adults with Congenital Heart Disease. They were established at the Bethesda Conference in 2000. Here is a link you might find useful …This means that your insurance needs to follow these guidelines or they are not adhering to current standards of care.”

Basically, the Conference established that anyone with congenital heart defects must be given the opportunity to be treated at an Adult Congenital Clinic. Any insurance that denies coverage for that opportunity is denying a basic necessity and right to that patient. Furthermore, she told me not to worry about the insurance on their end – she would take care of the approval process! She has been amazing, really.

So, already quite pleased with Stanford, I finally got to meet Dr. Murphy. Though very friendly and considerate, he is – in practice – very different from Dr. Etheridge. He did not seem as interested in individual symptoms, but more concerned with the overall picture of my general health: exercise, diet, hygiene, moods, habits, & hobbies. Maybe that’s just because this was his initial consultation with me. He feels that I am stronger since the surgery and that he wants me stronger still. Rather than, “Do as much as you feel up to,” his injunction was, “Do as much as you possibly can.” He is also different from Dr. Etheridge in his opinion on Coumadin: he puts just about every fontan patient on it, even when they don’t have extra risk factors (which I do). He hasn’t prescribed it yet, but he basically warned me that I should expect it eventually. I am not excited about it. Very not.

Overall, though, he seems really great and I’m glad to be working with such a supportive clinic. Our visit prompted a family council about goals and now I am back to doing light Pilates exercises every day. The first and foremost thing I’ve learned from Dr. Murphy so far is that my health is up to me. …I haven’t felt like that about it for a long time, but it’s a good feeling.

Meeting my new Cardiologist…maybeby Angie

15 Nov 2007
10:11 pm

Well, today was wild. Jim left work at noon and picked me up so we could drive out to Palo Alto for my first appointment with my new Cardiologist, Dr. Anne Dubin. They asked me to be there at 1:00, but what with registration and long lines in the clinic, we didn’t actually see anyone until about 2:00. They took me back and did an Echo. The first sonographer told me that I was considerably easier to study than the two-year-olds she was usually chasing around the room. Unfortunately, my grown-up body doesn’t image as well as a two-year-old’s, either, so the Echo took a very long time and two sonographers before they got all the images they wanted.

After another brief stint in the waiting room, we finally got to meet Dr. Dubin. She is really very nice and friendly – I was not at all surprised that she and Dr. Etheridge are friends, because they are very much alike in personality. However, we had a talk with Dr. Dubin and she told us that, while she is perfectly willing to take me on as a patient, she actually thinks I will be better served going to a fairly new Adult Congestive heart clinic over in the regular Stanford hospital.

This was a bit…well…discouraging. I’ve already spent hours on the phone talking to different people to get cleared with our insurance to see Dr. Dubin at LP Children’s Hospital. I know the Stanford hospital won’t be in our approved medical network, and the thought of starting the whole appeal process over again for new doctors in a new clinic is a little overwhelming. Well, I’ll worry about that later.

Anyway, the good news is that I am otherwise fine – ok Echo, perfect EKG, nothing too weird in the pacer check, and fairly decent lab results. My recovery is progressing as expected. The bad news, especially for those of you who are hoping to hear adoption updates, is that Dr. Dubin has designated next summer (at least a year out from my surgery) as the soonest we should consider anything as demanding as adopting children.

SO, the results from today are 1. More phone calls, and 2. More waiting.