Angie & Jim

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.

No News Yetby Jim

Just FYI, we haven’t heard anything yet.  We don’t know if we can go to the cath today or not.  We’re still waiting.  I’ll post when we know.

A Second Opinionby Jim

This afternoon, Dr. Murphy stopped by.  Dr. Murphy was Angie’s primary cardiologist when we first moved here and had been until only recently, when they transitioned her over to Dr. Lui.  Dr. Murphy has taken on more of an administrative role for the heart clinic and so he doesn’t spend much time with patients anymore.  He does, however, continue to be involved in decision-making meetings over his former patients.  He’d been in Cleveland this week, but still aware of the situation.  He wanted to stop by and see how Angie has been, which was really nice of him.  He really is a great doctor.  Anyway, he said a few things that we thought were interesting.  One thing he mentioned is that when there is high pressure in the blood, it will act just like when there is lots of traffic on the street: some cars will spill over onto surface streets to get through.  With blood, he said that our blood with actually make new pathways to get around the areas of high pressure.  Sometimes when this happens, you get oxygen rich blood that finds another path to the oxygen poor blood, which is called a shunt.  He said they weren’t uncommon with patients like Angie.  He seemed hopeful that they’ll be able to fix them, if that is what has happened.  I think it helped Angie to see him so optimistic about things.  I’ve always been really impressed by his doctoring.

After he left, Angie made a really interesting point.  We know that the fluid build-up was causing abnormally high pressures in her heart before they drained it off.  It seems very reasonable that this high pressure caused a shunt to form which would explain this oxygen saturation problem we’re facing.  Seems logical to me.  Let’s just hope it was formed in a place that can easily be repaired.

Jon & Brittany came by to visit and we played a couple hands of All Hands On Deck, the card game we’ve invented.  It was fun to play and visit with family.  It lifted our spirits a bit.  Jon also helped me administer the sacrament and give Angie a blessing.  I’m really glad they could come.

I’ve been reading The Fellowship of the Ring to Angie over the last couple days.  We both love the book and Angie has always loved being read to while in the hospital.  We’ve often used the Lord of the Rings trilogy books because we can start from any of them and end anywhere without worrying about how it begins or ends.  While Tolkien can ramble on about the country side quite often, he really is brilliant in the characters he created.  We both love the friendships of those in the fellowship.  We just finished reading the part where Merry, Pippin, Sam, and Fredegar tell Frodo about their conspiracy to come with them.  Love that part.

So, as things stand right now, I think the soonest we could go home is Wednesday.  Obviously, things would have to go quickly and very well over the next couple days.  Angie’s saturation levels have actually looked really good for the last few hours (over 90, even while sitting up a bit to eat dinner), so that is a bit encouraging.  I even saw it get to 99%, but it was only for a split second before falling back to the typical 91-92%.

I’ve had two different people from work offer to donate some vacation time to me.  The lab has a program that lets you donate vacation to someone else who is in need.  There are restrictions about how it can be used, but I would be eligible this week once my vacation is used up.  I can’t say how much it means to me to have anyone even offer to do something so selfless.  I feel so strongly that my place is right here by my wife’s side, and it pains me to stress about work when I feel loyal to both my employer and my wife.  But, my loyalty to my wife trumps everything else.  I’ve managed to get some work done, but not much.  If I can work a bit during the day, I can make my vacation stretch a little longer.

Thanks for reading, and thank you all for all the prayers and support.  We love you.

The Next Few Daysby Jim

The doctors just came and chatted with us.  They talked to us about what they want to do over the next few days.  They are still not sure why her oxygen levels are so low, so they want to do some tests.  The lung doctors can’t do what they normally do because Angie’s plumbing is a little different than usual and the results won’t be very telling.  Instead, they want to do another catheterization and look specifically around the lungs and see if there is blood mixing.  If the reason her saturation levels are so low is that oxygen poor blood is mixing with oxygen rich blood by a shunt, the doctor doing the catheterization has some ability to do repairs and block off the area that is mixing.  One of the doctors this morning said this wasn’t uncommon for fontan patients like Angie.  If they don’t find any mixing blood then they believe it is Hepatopulmonary Syndrome, which is a liver-lung interaction problem and unfortunately, the only thing they can do for that is to put her on supplemental oxygen — the same thing they’re doing now.  We’re hoping that isn’t the case, since she can hardly stand up without having problems.

The doctor that does the catheterizations, Dr. Perry, has been doing them for decades and is very good at his job.  They want him to do it and he’s not in today.  They will wait until tomorrow morning and see if he can fit her into his schedule.  So, the earliest they could do it is tomorrow morning, but it may not be until later in the week.  It all depends on their schedule and availability.

We’re hoping and praying for the best.

Daily Updateby Jim

We’ve been visited by both the liver team and the lung team today.  The liver people said that there are some abnormalities on her liver that they want to keep an eye on, but nothing especially dangerous that they think could be causing the current symptoms.  They said they want to have her come back in about 3 months so they can check on her liver and make sure it isn’t getting worse.

The lung people came by and wanted to know all about her most concerning symptom: sitting upright dramatically lowers her saturations.  We did the experiment again so they would watch and they listened to her lungs and asked many questions.  They have a preliminary theory, and they talked about seeing this symptom in others.  That was somewhat encouraging that they have seen this before and know what typically needs to be done.  They were very hesitant to pass a diagnosis without discussing further with the cardiology doctors, but they were talking about a shunt in the lungs.  What happens (I think) is that blood exchanges improperly and so it is mixing in the lungs and thus not getting enough oxygen to the rest of her body.  The fact that she drops when she sits up would suggest that the shunt is in the lower part of her lungs or diaphragm, which gets more blood-flow when sitting up.  While laying down, that part doesn’t get used as much, thus keeping her saturation levels higher.  Seems like a reasonable explanation to me.

They didn’t say much more about it, or what is typically done for it.  They also said if the shunts are few in number and large enough, they can surgically repair them, but if there are many little ones, it is more difficult.  That was about as specific as they got.  They alluded to some tests they can do to verify more certainly if there are shunts — more accurate than just sitting up in bed.  I’ll let you know when we have more news.

Thanks for the love and support!