Angie & Jim

Almost doneby Jim

Just got a visit from the doctors today (finally), and they seemed to be okay with the idea of Angie going home tomorrow or Friday!  Obviously, we’re hoping for the former.

Ray of Hopeby Jim

The last 24 hours have been very encouraging.  Now that Angie is on an unrestricted diet and she’s had some fluids, she’s feeling much better.  She still isn’t walking yet, but I don’t think it will be much longer before she is.  She’s stood for a few minutes at a time by the bed (and plugged in for monitoring) and hasn’t had any problems yet.  This morning I finally had enough appetite to eat a regular breakfast.  I think the plan is to still do the hepatopulmonary syndrome test today, just to make sure, but I think the general consensus is that it will come back negative.

Angie had some x-rays this morning and they wheeled her away in a wheelchair and she sat the whole time without difficulty.  She was on oxygen, of course, but she’s been trying to sit up a lot over the last day or so.  Angie is very goal oriented when she wants something.  Ever since the doctors gave her some objectives, she’s been working hard.  She’s anxious to get home, so she’s going to press the doctors this morning to give her a list of things she has to do before she can go.

On Monday, when things were looking pretty glum and Angie wasn’t getting better (and slowly getting worse), I was starting to get a bit discouraged.  When they took her away to do the catheterization for the second time to look for shunts or other problems, I was sitting in the hospital room looking out the window.  We have a magnificent view of the construction just across the way.  We’ve watched over the course of a week as they made slow progress on the new building.  The workers had gone home for the day and the site was deserted.  The sky was starting to look gray with dark clouds across the sky.  The gloom reminded me of the despair I was feeling inside.  As I looked out, I saw a beam of light peeking through.  I thought about the desperate bit of hope I felt and how similar it was to that little beam of light against the dark sky.  I admired it and then went back to my laptop.  A couple of minutes later, the clouds broke is such a way that the sun shone directly into the window and light streamed into our room.  I looked up at the sun through the window and the light was so bright that I could hardly see the dark clouds that filled the sky.  It was a beautiful moment.  I knew there were still things we would have to get through, and questions we still needed answered, but somehow I felt a little better about it.  Several more beams of light shone through the clouds over the 30 minutes or so and so I snapped a picture with my camera to remind me of the experience.

Thank you all for your kindness and support during this difficult time for us.

Regearingby Jim

Well, Dr. Rogers stopped by to see how Angie was doing.  Sounds like the plan is to get her body healthy again with some good and supplements.  Her chocolate Ensure arrived and she tried that.  Oh, boy.  Anyway, she ordered some pizza and is in the best spirits I’ve seen get in for a few days.  So, I’m going to take the opportunity to run home and take care of a few things and go into work for a few hours.  I’ll also go home and get some things to keep her entertained for the next couple days.  We’ve exhausted the small supply I brought with me with the short notice we had.

Things are looking up, but we still have a ways to go.

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.