My Angel Motherby Jim

9:02 pm

A Grandmother's LoveLast weekend, Angie and I flew out to Atlanta to visit my parents.  Some of you may have heard that my mom has been having some health problems lately.  We got in late Friday night and on Saturday, we learned that Mom has a very rare condition called Creutzfeldt-Jakob’s disease.  The disease is caused by misfolded proteins called prions that destroy brain tissue.  This disease only affects about one in a million every year, so very little is known about it.  What is known is that most people live less than a year after first showing symptoms (the median time is 4 months).  For Mom, that began back in September when she started having balance problems.  Toward the end of December, she started losing her short-term memory.  A variety of tests had all come up negative, but because of her continued decline, she had another MRI early this month and the doctors finally saw the first evidence of this condition.

After we learned about this disease, we made arrangements for all of her children to come to Atlanta to visit her.  Within 36 hours, all six of her children (and some in-laws) were there in her home.  It was so wonderful to see her surrounded by loving family.  A few days before she could no longer use a pen, she wrote in her journal that she didn’t understand what was happening to her, and why she couldn’t remember things, but she said she remembers “who I am and who I love.”

When someone begins to lose their ability to think and concentrate, the only thing that is left is their true personality.  You can’t put on a front or pretend to be someone you’re not.  Mom’s true personality shows through all that she’s been enduring.  She is sweet, happy, obliging, and loving even though she can’t understand what is happening to her.  I think it speaks volumes about the kind of woman she is.  Her love for her family has always been her top priority.  She has always been such an amazing example to all of us.

Losing a loved one changes you in a way that no lesson or book or conversation ever could.  Last summer Angie’s dad passed away unexpectedly and it affected us both deeply.  After that kind of loss you have a different perspective on nearly everything you do.  Things that you thought were important become meaningless and other things become surprisingly precious.  I think that this outlook is closer to the eternal perspective we ought to have every day.  I think that what’s happening now has the potential to change us for the better.  That’s what I hope for and I know that’s what Mom would want.

While I was in Atlanta, my sister read an email from my nephew to my mom.  He asked her how she was doing and what she was feeling.  Mom dictated this brief response, “I’m a little down, but I refuse to be defeated.”  This is the attitude she had throughout her life.  Mom, you have not been defeated; you have been and always will be triumphant.

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Follow-upby Jim

8:12 pm

We just got back from the hospital and Angie’s follow-up appointment.  I dropped her off and she went in to get her labs drawn and chest x-ray.  After that, we went upstairs to see the doctor.  They started with vitals and an EKG.  The EKG was a little hard to read because Angie’s heart rate was a little high, so the doctor wanted Angie to go have her pacemaker interrogated at the children’s hospital across the street.  They showed us the x-ray and her lungs look much better.  The fluid is nearly all gone, thanks to the increased diuretic Angie has been on.  Because the image looked so good, they decided to dial down her dosage, which we’re grateful for.  Before we left, Dr. Lui talked to us about a new drug he’d like to put Angie on.  It is a vasodialator that should help with her pulmonary pressure.  That will (hopefully) decrease the fluid build-up and a nice side effect is increased oxygen saturation levels.  There are risks, as with any medication, so we went over those.  He’s very hopeful that this drug will really help Angie get back to normal.

20131209_153149After our chat, we walked over to Lucile Packard’s and did the interrogation.  Being a children’s hospital, the pacemaker interrogator has a little turtle covering.  It’s very cute.  We were thrilled to find out that Angie is not in arrhythmia!  Hooray!  She did have an episode of arrhythmia a few days ago, but it lasted only 11 seconds, so it didn’t worry them too much.  If it keeps recurring, I’m sure it will worry them, but for today, she’s in great shape.  With that great news, they bid us goodbye and let us go to fight commuter traffic on our way home.

We are also very excited to hear that my sister-in-law, Kelly, is cancer-free!  She went in for surgery last week and today we learned that the doctors found no trace of cancer in her body.  We’re so happy for you, Kelly!

We were so excited about the news of the day that we decided to celebrate by going to Angie’s favorite restaurant in Livermore, which is right of the freeway on the way home.  Thank you all for your love, support, prayers, good thoughts, words of encouragement, and everything you’ve done to help us over the last few months.  We couldn’t have gotten through without you!

Going Homeby Jim

7:12 pm

We just received our discharge instructions and I’m walking out to get the car now.  Angie was a little slow waking up, so they kept her in recovery longer than usual.  We’re quite happy wet get to go home tonight.  We have a return checkup on Monday to make sure everything is still okay.  Thanks for your love and support today!

All Doneby Jim

2:12 pm

The doctors just finished chatting with me and Angie is all done.  The cardioversion went fine; they pumped 100 Joules through her chest.  It worked on the first try, otherwise they’d have cranked it up to 200.  I asked the electrophysiologist how many volts that works out to be, but he didn’t know.  He showed me the impedance from the printout and was curious to know if I could work it out.  Unfortunately, he didn’t tell me how long the pulse was, so I can’t figure it out yet.  I’ll try and ask for it later.

The transesophogeal echocardiogram didn’t find any clots, including the one they saw a month ago, which is great news.  They did, however, see a pleural effusion in her lung.  This is most likely the same effusion that she’s had since our last stay.  The bad news is that it hasn’t dissolved on its own.  I don’t think it will be a big deal, but they ordered a chest x-ray just to make sure.

The other good news is the doctors said they intend on sending her home tonight!  I was glad to hear that.  She’s recovering right now.  I’ll try and post again after I’ve seen her.  I don’t know how long they’ll want to observe her here at the hospital, but I’m sure we’ll end up having to fight traffic again on our way home ;)


The Procedureby Jim

1:12 pm

They’ve taken her back to get started.  It should be a quick one.

Back at the Hospitalby Jim

9:12 am

We’re back at Stanford for the cardioversion.  We were supposed to check in at 9, so we got up early and braved the commuter traffic this morning.  We made good time and arrived a bit early.  It is really hard to gauge what it will be likein the mornings.

So, today’s schedule includes a transesophogeal echocardiogram to check for clots and then a cardioversion (electric shock to get the heart out off arrhythmia).  Normally this is just a same-day procedure, but with Angie’s history I anticipate that we’ll be staying for observation for at least a day, maybe two.

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Infusion & Check Upby Jim

10:11 am


We’re here at Stanford for our weekly appointment and for an iron infusion.  Dr. Romfh decided she wanted Angie to get an infusion of iron because she thinks Angie’s iron is low because she isn’t absorbing it.  So, since we were coming out to Palo Alto anyway, we just came several hours earlier (and had to fight commuter traffic).  A regular iron infusion lasts 4 hours, so we’ve got a long day ahead of us.  Since Angie has had such bad luck with IVs over the last few weeks, we requested the crisis nurse right away.  While we wait for the crisis nurse, they always put your arms on heat to open the veins.  The crisis nurse arrived in a few minutes and got the IV in on the first try.  Phew!

They have nice comfy reclining chairs here for the patients because they have to sit for so long.  We brought a good book and plenty of things to keep her entertained, so hopefully it will be (somewhat) relaxing.

This afternoon we’ve got an appointment with Angie’s cardiologist.  We’ve also got an X-ray and blood work scheduled.  We’ll probably be done just in time for rush hour on our drive home.