Must Relaxby Angie

17 Nov 2008
6:11 pm

I visited Stanford today for another pacer check and an appointment with Dr. Al-ahmad. The bad news is, I’ve had another episode of V-tach, although I “got out of it” on my own. The good news is, there was only one, and Dr. Murphy has convinced Dr. Al-ahmad that I’ll be safer if we just leave things be for now. SO, I’m good to go for another six months, apparently.

I have another little problem, though. When I checked in, my pulse was about 110, and it stayed over 100 the entire time I was there. Based on my pacer history, this is not a unique occurrence. My sleeping rate has been consistently over 85, which isn’t good either. There’s not much to do about it, though – except eliminate all stress from my life… and where’s the fun in that, I ask you? Well, they lowered my pacing rate from 85 to 75 and I’m supposed to seek more calm and untroubled state of being. I’m thinkin’ that’s not happening between now and next year.

Stressful Testsby Angie

9 Jul 2008
7:07 pm

Well, folks, it’s mostly good news today.  I braved commuter traffic to reach Stanford at 9am for an echo, a stress test, and a clinic appointment with Dr. Murphy.  The echo went fine.  My function is down a little – 35% – so they’re going to keep an eye on that, but everything else looked normal.  The stress test was definitely successful in stressing me out.  One of the nurses commented afterwards that my heart rate only got up to 118, so I was feeling a little dejected – like I’d failed or something.  When I met with Dr. Murphy, though, they brought in the results for him to look over, and he commented, “Well, I’m glad to see you’re not a faker.”  I asked him how he could tell, and he said there are numbers in the results that can indicate pretty decisively whether a patient was really pushing themselves to their limit.  He said I probably went “beyond the limit, in fact.”  So I felt validated.

We talked about the results from my second CT Scan:  The swollen patches are still there, unchanged.  He intends to re-present the case to his collegues, but they’re probably just going to check them again in six months.  The clotting they noticed in my artificial conduit last time is gone.  That’s my favorite news, because it grants me a six month reprive from the Coumadin issue.  Then we talked about adoption.  He is hesitant to sign my physician form.  He said he’d like to read through the paperwork and think it over.  I presume he’ll let me know when he’s made a decision.

Post-Op Appointmentby Angie

10 Jun 2008
5:06 pm

Jim took a half day off work to drive with me to Stanford today for my post-op appointment with Dr. Jacobson. Everything looks good! The last of the bandages are off and now I can drive and swim and all sorts of fun stuff!

She did say, however, that the one thing I shouldn’t do is sit-ups: not for another month. I think I can live with that. 🙂

Cross your fingers for me…by Angie

7 May 2008
9:05 am

Just thought I should let our family and friends know that I am going in for a little bit of surgery in two weeks . It’s not heart surgery – nothing serious at all. I just have a benign but annoying problem that they want to nip in the bud. We’d appreciate it if our loved ones would keep us in your prayers on May 21st. We’ll keep you posted on how it goes!

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My New Electrophysiologistby Angie

5 May 2008
8:05 pm

Today I drove out to Stanford Hospital to meet my new Cardiac Electrophysiologist (basically, pacemaker doctor), Dr. Amin Al-Ahmad. In addition to his practice, he is an assistant professor at Stanford University. He was very friendly and positive. I also had a pacer check in the clinic. Everything looks fine: battery is good, with only a few arrhythmia episodes in the last six months. That’s the kind of news we love to hear.

CT Scanby Angie

7 Feb 2008
11:02 pm

Well, I lived. They had to poke me twice in my left ankle and then finally in my right before they could find a vein that would take their blasted 20-gauge IV catheter. It was not remotely comfortable. Also, I understand wiggly children in church better after today: It is so much harder to hold still as soon as someone tells you that you’re not allowed to move!

Anyway, the good news is that the Cardiothoracic Radiologist did an initial sweep of the scan and didn’t see any major clots. Now he has to thoroughly examine the over 2000 images of my “plumbing” (as he called it) to make sure nothing questionable has been missed.  He told me all this and more right after the CT was through, but I was pretty out of it and didn’t retain much.  I’ll see Dr. Murphy again in a couple of months and we’ll find out whether I’m safe to stay off coumadin for a while longer.

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.