CT Scanby Angie
7 Feb 2008
11:02 pm1
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 pm1
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 http://www.achaheart.org/bethesda.php …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 pm0
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.
Feeling Noble?by Angie
15 Nov 2007
7:11 am0
Ever had an experience where you were feeling quite proud of yourself for something, only to realize that you weren’t really being such a hero after all? That happened to me last night.
You see, Jim stayed to work late a couple of times this week and I was tempted to feel a bit annoyed about it; as if changes in scheduling sort of threw off my groove (even when he let me know in advance). However, I had a chat with myself and concluded that there would be no complaints from me (out loud, at least – obviously I was already complaining to myself). I guess this decision was a good choice. The bad choice was that I proceeded to let myself feel pretty noble about being so “humble” (ha ha).
Well, all such pride must be mortified, and my wake-up call happened last night. Imagine my feelings when I found out that my sweet husband was staying late to get some extra hours in, so that he could surprise me by taking half a day off to come with me to my doctor appointment today! I have to drive to a new place, all the way over in Palo Alto, and meet my new Cardiologist, Dr. Dubin. He knew I was nervous about it and didn’t want me to have to be alone.
Jim was being the noble one! Far from noble, I was only being civil – and a good thing, too. Imagine if I had complained to him about it, when he was planning something special for me?! My puffed-up feelings of vanity deflated and were replaced with gratitude, which is probably the best antidote I can think of for pride.
I am so grateful that I have such a sweet and thoughtful husband who goes out of his way to take good care of me. I’m grateful he has such a good job that fits our family needs so well. Most of all, I’m very grateful that Jim is so patient with me and wants me to be happy. These are some things I should be remembering, the next time I find myself “feeling noble.”