Angie & Jim

Gameplanby Jim

I’m sorry but it seems like the post I wrote last night didn’t get published properly until just now.  Let me catch you up on the latest from the doctors.  They’ve decided not to do the transesophageal echocardiogram and cardioversion today.  The rationale is (I believe) that the risk of going home while in arrhythmia is that the fluid build-up could get worse, but they trust us to pay close attention to Angie’s weight and fluid intake/output.  We may go home and have to come back in within a couple days, but if things continue as they have the last couple days, we should be good.  They want to keep her here for another day or two while they figure out the right balance of diuretic medication to get the fluid retention to a safe level (not too dry, not too wet).  They also want to give the medication a chance to cardiovert her chemically.  Everyone recognizes that it is a very slim chance, but it has been known to happen.

So, when we go home our main objectives will be to monitor Angie’s fluid build-up & breathing and to keep her anti-coagulated to dissolve any clot that may have formed in her atrium and the clot that is in her ventricle.  We’ll also have her on her Sotalol, the medicine for the arrhythmia, which might cardiovert her chemically, but if not, when we come back in a couple weeks the drug will help her stay out of arrhythmia.  There is always a chance after a cardioversion that you’ll get right back into bad rhythms.

Well, I have to hurry off to breakfast before they stop serving it.  Thanks for all your thoughts and prayers!

Upcoming Decisionsby Jim

Dr. Lui stopped by a couple hours ago to give us a briefing on what is being discussed among the team of doctors overseeing Angie’s stay here.  Basically, it boils down to this: they want to get Angie out of tachycardia as soon as possible.  The problem is there is a risk in cardioverting her right now because she has a clot in her heart.  They are trying to decide between letting her go home and keeping her on anti-coagulation (blood-thinning) medication and then cardioverting her after a few weeks.  Obviously, that means leaving her heart’s atrium racing for weeks — not a great prospect.  The other option is doing the transesophageal echocardiogram (TEE) to make sure there isn’t a clot in the atrium (where the flutter is) and then just cardioverting her on this hospital stay (probably tomorrow).  This would get her heart back to normal, but the risk of doing a cardioversion with a clot is that the clot will break loose and cause damage in other places, possibly resulting in stroke, heart attack, etc.  They don’t know how long the ventricular clot has been there and what the chances are of breaking off from a cardioversion.  Old clots tend to be sturdier and less likely to break free.

Anyway, Dr. Lui wanted to keep us informed of the options being discussed.  I think they’ll have made a decision by tomorrow morning.  I got the impression that Dr. Lui would really like to not send Angie home in arrhythmia, meaning that he would prefer the TEE and cardioversion.  If they do this, they will probably need to keep her here a little longer while she recovers from the cardioversion (which makes you feel like you’ve been run over by a train).  They would monitor her very closely for the first 3 hours to make sure a clot doesn’t end up where it doesn’t belong.  After that, the risk is very slim that anything would happen.

Dr. Lui told us that we have the final say in whether they do the procedure on this visit.  I don’t think if we insist that they do it if the consensus is that it is too risky.  However, if they decide it would be best to go ahead and do it, we have veto power to say, “no,” and they won’t.  I must admit, I feel a heavy burden in trying to make a decision like this, but we’ve talked it over and we will continue to ponder and pray about this tonight.

Thank you all for your continued support.

A Quick Updateby Jim

We haven’t seen any of Angie’s doctors today (well, the ones who are in charge), but we have heard a few things.  One is that her net fluid is down, which is a good sign.  She’s also lost a couple of pounds from yesterday, which is another good sign.  The not-so-good news is that they’re suspending the Sotalol because of the EKG from last night after her last dose.  Apparently her QT wave is a little extended, which is a bad thing.  If it is too far delayed it can affect the polarization of the next heart beat.  Or so I’ve been told.  The Sotalol is the anti-arrhythmia drug they’re starting her on.  Hopefully we can hear from the doctors soon about what the plan is on this development.

A Slow Dayby Jim

Today was slower and a little better, emotionally, at least.  Angie’s fluid is still about the same, but they’ve increased her diuretic medication, so hopefully that will make some difference.  A few doctors have visited us throughout the day and the plans seem to be about the same.  It appears as though the transesophageal echocardiogram (TEE) will not be done on this visit.  If the fluid doesn’t drain naturally, then a chest tube probably will be done on this visit.  Angie isn’t thrilled about that prospect, but it is so critical that her lungs are clear.  The doctors believe that her arrhythmia could be increasing her fluid build-up, which they also believe might have been caused by fluid build-up.  Kind of a downward spiral, you might say.  The doctors have been listening to us very well, and one of them even gave Angie her cell phone number so she can text her and get clarification when things are confusing or sound contradictory.  They really have been very good.  We can tell, however, that sometimes they disagree about the best path forward.  It is understandable given that they also don’t seem to know exactly what the problem is.  Still, this problem is common in patients like Angie, so it isn’t surprising, it just needs to be dealt with.

During this stay, they’ve given Angie a private room.  They have even brought in a cot for me to sleep in.  It is nice to be with her round the clock, and I know it helps her to have me near.  We’re also outside a noisy hallway, so we close the door most of the time, but then the room gets a little lonesome, I think.  I’ve read a lot to Angie to help keep her entertained and distracted.  We’ve finished book one of The Lord of the Rings (the first half of the Fellowship of the Ring, which is divided into two books).  It is an interesting experience reading about the hardships these characters had to endure from the perspective of enduring hardships ourselves.  Somehow, it makes it much more poignant.

Angie’s been a little emotional lately, as our hospital stay lengthens.  It is hard to endure the waiting and the restrictions.  Many of you have asked if there was anything you can do to help, so now I have a task for you.  Phone calls would become overwhelming after a while; it wears her out to talk a lot.  But, an email, or a text, or a facebook message would probably help to brighten her days.  Just keep in mind that she won’t be able to answer, even though she is very grateful for every thought and comment you may send.  Something that might make her laugh would also be great.  Don’t feel obligated, but if you were hoping to help somehow, go ahead and send her a little something over the next day or two (or three or four…).

Thank you all for your love and support.

Catching Upby Jim

I’m sorry I haven’t posted anything new today.  There has been a little back-and-forth between the doctors involved, so I wasn’t sure what to say yet.  Now that the day is nearly over, I think things are at least set for tomorrow.  So, here is the latest:

Dr. Dubin (a pediatric electrocardiologist, and one of the first heart doctors we met here at Stanford/Lucile Packard) came by and told us that she’s will helping with Angie’s arrhythmia.  She remembered us, even though we hadn’t seen her for about 6 years.  She told us that she wants Angie to start on an anticoagulant (blood thinner) because of the atrial flutter she’s experiencing and also because of the clot that they saw during her CT scan.  We hadn’t heard much about that clot, so that was a surprise to us.  It isn’t related to the flutter she’s having since that was before she got into tachycardia, and we don’t know how long it has been there, but they are concerned nonetheless.  Dr. Dubin also wants to get Angie on some medication that treats tachycardia called Sotalol.  While it is unlikely that the drug will get her out of the flutter, it is a possibility.  Regardless, they didn’t want to start that until she was on the anticoagulant, which she now gets via IV.  Last week, they had given her Heparin in shot form every 8 hours.  If you hate getting shots in the arm, try getting them 3 times a day in the stomach.  Yuck.  Now that it is delivered in her IV as a drip, it means she has to get another IV for other medicine — so she still has to be stuck again.  Not fun.

Dr. Dubin also wants to do a transesophageal echocardiogram (or TEE) to have a better look at the clot in her ventricle.  TEEs are basically an ultrasound from inside your throat.  It involves being put to sleep and having a breathing tube down your throat.  Usually, they also take it out while you’re asleep.  Angie has woken up with them still in and it is about the most unpleasant experience you can imagine coming out of a procedure.  Dr. Dubin’s plan is to deal with the fluid problem first and then get her on anticoagulation for a month and then bring her back in for another TEE and a cardioversion (a shock to stop the arrhythmia).  We’re not thrilled with the idea of atrial flutter for a month, but with the current state of things (fluid, clot, etc.) that is probably the best option.

Dr. Lui came in later and said he didn’t want the TEE (which made Angie pleased) since it wouldn’t change what they end up doing and it means another procedure for Angie.  We trust them both and know they are both experts, but it is hard for a patient when the doctors disagree.  If Angie has the TEE, she’s supposed to be off of food and water for a few hours beforehand, but we’re already worried about her losing her strength and when you can’t eat, it doesn’t help.

So things went back and forth and the latest from the nurse is that she can eat after midnight, which means that she will not be doing the TEE tomorrow.  Of course, that may change tomorrow, but it won’t be until after breakfast (probably).

Today has been a bit emotional and difficult as we see the doctors struggle to figure out what to do next.  Angie had an x-ray this afternoon that didn’t look markedly better than yesterday, which means the fluid isn’t draining very fast.  We hope that that changes because we would prefer not having another chest tube.  I’m hoping that they will give her another day tomorrow to shed as much as she can before they decide what to do next.

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Thank you all for your love and concern.

Long Hard Road Aheadby Jim

Dr. Lui and Tara Drake (Dr. Lui’s assistant) came in after we got into our room here at Stanford to give us some information.  Right now Angie’s heart is in fibrillation, which they can’t fix yet because of the fluid in her lung.  Angie has taken a couple doses of diuretic today and has another tomorrow morning before her chest x-ray.  If Dr. Lui feels it is helping enough, then that means Angie won’t need another chest tube.  It would be great if they don’t have to drain her like they did last time.  It is very important that they get this fluid off, but it is much better to get it out naturally (or at least medicinally).  We’ll know mid-day tomorrow.

As far as the arrhythmia, this is where things get complicated.  Because it has been going on for so long (over 48 hours now), she’s at risk for a blood clot.  That means they don’t want to get her out of arrhythmia until she’s been on a blood thinner and something to suppress the arrhythmias themselves.  The drug they want to put her on is a drug that is very effective, but it also tends to have negative side-effects that they are concerned about.  Dr. Lui said that these side effects generally are only problems when the drug is taken for a long time, as in years.  He wants to only have her take it for a few months while they sort out her rhythm problems.

It sounded like Dr. Lui wants to get the fluid problem fixed this week, send her home for a few weeks on the new medication and then have her back in 3 or 4 weeks to cardiovert her (shock her to stop the arrhythmia).  Angie has had a cardioversion before, and they aren’t fun.  I’m pretty sure they need her to have a functioning respiratory system before they want to do that.

So, that is the current state of affairs.  It looks like we’ve got a few weeks of challenges ahead of us.  Please keep praying for us.

Thanks.

It’s Not Over Yetby Jim

I was nearly done composing a post when things changed and I had to start over.  Over the weekend she had some tachycardia and when we called the doctor he wanted to see her today.  When we arrived, they did an X-ray and did some blood work.  The chest X-ray showed fluid building up in her lungs again.  It wasn’t as bad as in the ER two weeks ago, but it is definitely worse than when she was discharged last week.

Dr. Lui had a hard time deciding whether to let her go home or to admit her to the hospital.  In the end, he decided to let her go and try to drain the fluid medicinally.  If anything worsened, we were to come in immediately.

Since she had some arrhythmias over the weekend, we asked if we could have her pacemaker interrogated and found out that she’s been in atrial fibrillation since Saturday night.  They called her cardiologist and he changed his mind and wants her admitted tonight.  So, it looks like another week in the hospital for us.