Angie & Jim

Morning Reportby Jim

We had a visit from a few of Angie’s doctors.  We caught them up on the events from last night (Dr. Perry’s cath).  The pulmonary doctor didn’t seem convinced about the blood pressure theory.  We had Angie sit up and measured her blood pressure and it was about the same as when she was laying flat with higher saturation levels.  So, I wouldn’t say we’re back to square one, but we still don’t have all of the answers.

Dr. Lui came by just as I was typing the above paragraph.  He came and chatted with us for a bit and did some tests with Angie.  He wouldn’t tell us his opinion based on the results of his tests just yet, but he seemed optimistic about the diagnosis of just low blood pressure and loss of fluids causing the problem.  He was all for changing her diet (to unrestricted! Wahoo!) and lowering the diuretic drugs (the ones to make her lose fluid).  He still wants to do a test for hepatopulmonary syndrome, but for right now, Angie just needs to regain some strength.  He said that there is a balance between trying to keep her oxygen levels high and retaining fluid (which caused her lung to fill with fluid last week).  The more she takes in and retains, the higher her oxygen levels will be (because of pressures in the venous system of her body), but if they go to the other extreme, her pressures drop and her oxygen drops too.  They’ve swung the pendulum from one extreme to the other, and it is just a matter of finding the balance again.  One thing he mentioned that makes a lot of sense is that two weeks ago Angie came down and saw him for an appointment and she was just fine.  Shunts and AVMs form slowly over time.  He thinks it strange that they would suddenly be a problem.  That was certainly encouraging.

Dr. Dong (the dietician) also just stopped by to talk to us about Angie’s diet.  They’ve got dietary supplements ordered too to help her start gaining weight.  Her appetite has been poor, but a big part of that is because she’s already had everything she can from the very low sodium diet and none of it was that great.  So, we may be here a little while longer while she regains her strength, but at least we’ve ruled out some of the most scary possibilities.

The New Theoryby Jim

Angie is back to her room and I’ve chatted with her a bit and caught her up on the latest theory.  She only got a few details and knew that they didn’t fix any shunts, so she was really worried that it was kind of a useless procedure.  The more I think about, the more it makes sense.  Angie’s blood pressure has been lower than usual and she’s been on a very low sodium diet (lower than we have at home) and she’s lost TONS of fluid and is taking medicine to make her lose fluid.  They were worried about her blood pressure in the cath lab, so they were a little light on the pain meds, so it was a tough cath for Angie.  They’ve got her on a fluid drip now because she’s a little dehydrated.  The irony of this is really strange to me.  She had 4 L of fluid drained out of her chest, and now we’re pumping fluid back into her arm.  I know it is necessary, but you have to admit, it’s ironic.

After chatting with Angie, she remembers having had blood pressure problems several years ago back in Utah.  She said that on a few occasions, she would start to feel fuzzy, then nauseated, then she’d have to sit down or lie down.  Eventually it would pass and she’d be fine.  She told her cardiologist about these episodes and she said that Angie was probably just having problems with her blood pressure.  She advised her to carry a bag of Doritos with her wherever she went and if she felt it coming on to just eat the chips.  It is exactly the same sequence of feelings she has now when she’s sitting up.  The shunt theory didn’t quite add up, because it should have been more constant and not so dependent on her position.  This theory fits everything we’ve observed so far.

It also makes me feel better that shunts haven’t suddenly formed in her body.  That would have started a new and scary chapter in her medical history.  Additionally, if they had formed, it would probably have been because of the prolonged high pressures in her heart.  I would have felt terribly guilty (in fact, I was already starting to) knowing that we could have come to the hospital sooner and that maybe we could have come before they were formed.  The low-blood-pressure theory is much simpler and easier to deal with.

Thank you all for your thoughts and prayers today.  It means so much to us.

Resultsby Jim

I just spoke with Dr. Perry and he told me how things went.  He said that generally, things went very well.  He said they didn’t find or repair any shunts.  He also said the pressures in her heart were back to normal, and in fact, in one of the chambers was unusually low.  I suppose that the fact that there are no shunts is good news, but the fact that they aren’t sure what is going on is a little discouraging.  Dr. Perry said that he thinks it is possible that the low pressures in her heart may be a sign that her blood pressure is dropping drastically when she gets up.  He does make a good point, since if there were a shunt, sitting up shouldn’t really make much of a difference.  He thinks that her body is just so weak from having the fluids drained and not eating or drinking as well and being on medicine to lose fluids so that when she stands, her blood pressure plummets, which would also make her saturation levels plummet.  Her blood pressure has been lower than usual over the last few days, so that would fit the symptoms.  We’ve never measured her blood pressure while sitting up.  Maybe we should.  Dr. Perry thinks that her lung could have been partially collapsed for a long time and that it takes time for the lung to bounce back and start working again.

Anyway, we’re not out of the woods yet.  Thank you for reading and praying for us today.

Out of the Labby Jim

Got a call about 20 min ago saying she’s done and in recovery.  Still waiting to hear from the doctor.

Away to the Cath Labby Jim

They just took Angie into the cath lab.  One of the nurses said there is about 30 minutes of prep and about an hour of procedure.  Estimates are almost always low when it comes to times at hospitals, but it sounds like this one will be quicker than the last one.  Anyway, I’ll let you know when it’s done.

Just a recap for those of you who need some catching up.  Angie’s going back into the cath lab to have Dr. Perry look and see if he can find a shunt that is causing the dramatic drop in oxygen saturation levels when Angie sits up.  There can be shunts in a few different places and if he can find some, he may be able to fix them.  He may also do what is called a “bubble test” to see where blood is shunting in the lungs.  We’re hoping he can find a shunt and that he can fix it in the cath lab.  That would be the fastest and easiest way for Angie to recover.  Any other repair would probably involve a more invasive surgery and extend our stay into next week.

Thank you all for your prayers and your support!

Cath Lab Todayby Jim

Rosalee from the Dr. Perry’s cath team just came in to get Angie’s consent to do the catheterization today.  She said it should be about 90 minutes before they can take her, but that they’ll take her today.  Hooray!

She also talked about the things they can fix and she mentioned both the shunts that were mentioned and the AVMs in the lungs, so that is good.  So, we’re hoping they find something and can fix it.  I’ll post again when she goes back and of course, as I find out any news after the procedure.

Current Statusby Jim

Dr. Rogers just came by and told us the scoop.  Dr. Perry is in the cath lab with another patient right now, and he’s been talking with the team to see if they can get her in today.  We’re really hoping so because Dr. Perry doesn’t work on Tuesdays, so we’d have to wait until Wednesday before he could do it.