A Bit of Déjà vu

Sitting here, in a hospital room, with a laptop on the bedside table, watching Lori sleep. Seems as though I've done this before.

Don't worry, just a minor surgery. Here's the story...

For about a year or so Lori has been having trouble with her memory. Over the past six months it has progressed to the point where we can have complete conversations that she will forget the next day. Important things too, not just general chit chat. Dr. Peditto (Lori's primary doctor) told us a while ago if it continued we should go see a neurologist. It continued, but we didn't. I think Lori was a bit apprehensive about going to a neurologist and having another condition added to the ever increasing list of conditions. She just wrote things down more and I understood I may need to repeat something a day or two later.

During one of our visits to Lori's new Rheumatologist we told her about it. She too said we should see a neurologist. Still didn't go. I urged Lori to go as the memory issues were getting worse. It wasalso becoming a concentration issue. It wasn't until Lori passed on some information by mistake in an email that was supposed to be private that she knew it was time she went to the doctor. Now it was affecting more than just her and I so she instantly saw the need to get it checked out.

We had our first visit with the Neurologist a few weeks ago. He informed us it could be a few things but we should keep in mind that Lupus itself can cause memory issues. This condition as it relates to Lupus is called Cognitive Dystunction. Before we put the blame on the big bad Lupus we have to do all the tests. He orders an EEG, an MRI of the brain and a sleep study. We reminded him Lori has already been diagnosed with sleep apnea from a previous sleep study. He replies that because it has been a couple of years since her last test he wanted her to do it again. Fair enough.

We have the MRI done. The results show something on the left mid brain that could be an AVM (Arteriovenous Malformation) He orders an MRA of the brain for further evaluation. In the mean time we have the EEG. The EEG came back normal. Lori also did the sleep study. She failed miserably (again) and chronic obstructive sleep apnea was once again diagnosed.

We had the MRA and wait for the results. It was a pretty stressful week. There was a real good chance some type of brain surgery or procedure would be required if the placement, size, etc. of the AVM warranted it. At our visit to find out the results of the tests the Neurologist tells us "at this time I think it is best if we leave it alone". What a relief. There is something there and it will need to be watched for any changes but for now we leave it alone. Yay! Both the MRI and the MRA did confirm Lori had some type of stroke previously, he had no idea when though.

With the EEG normal and the AVM not something that would be affecting Lori's memory we were left with either the sleep apnea or the Lupus. We were doubtful it was the sleep apnea since Lori has had it for quite sometime and the memory issues are recent. As we discussed this with the Neurologist he pointed out that if the apnea goes untreated over the years it could cause complications, one of them is memory issues. He asked if Lori used a CPAP machine to treat her sleep apnea. (That's a machine that constantly pumps positive pressure air into your mouth and nose to keep your airways open while you sleep.) We informed him that Lori used one for a while but she would wake up literally full of air. Sometimes you could see the air pocket in her belly. The cramps were unbearable so she stopped using it. The Neurologist suggested Lori go see an Otolaryngologist (Ear Nose Throat Doctor) for a consultation.

We met with the ENT Doctor the next day. After his exam he informed us that Lori's cartilage in her nose is so crooked it blocks her air passage. He also said that when he looks into her nasal passages all he sees is a tiny slit for the air to get through where normally there would be an open, round passage. He was not surprised at all that the CPAP machine did not work. The pressure required to make it work and get the air through Lori's tiny little slits would simply be too high. No wonder she was all bloated.

He said there were two surgical procedures that he thought Lori would benefit greatly from. One was called a Septoplasty and the other was called a Turbinoplasty. Upon further evaluation he also recommended another procedure. He said he typically doesn't do this surgery as its results are inconclusive for most people. He further explained that 99% of the patients he sees for some sort of sleep apnea treatment he does not do this procedure. Lori happens to be in the 1% where he feels it will help. Uvulopalatopharyngoplasty is what it is called. Yeah, I know. File that one under "Impossible Words to Pronounce the First Time You See Them" for $500 Alex

All three procedures are designed to open up the airways. If they all work a CPAP machine may not be required, or if it is it will require a much lower pressure to be effective. So with a few phone calls to the insurance company Lori's all set for her surgery. But it is Lori we're talking about so it can't be that easy...

Lori is scheduled for Surgery today, Monday the 5th. Last Tuesday was the pre-op appointment at the hospital. Round one with the hospital nurse went OK. Lori's BP was a bit high but not too bad. The nurse did tell us that they needed a chest x-ray before Lori could do the surgery and set it up for later in the day. No problem so far. We then went upstairs to the surgical ward for the pre-op with that department.

Once again Lori's BP was high. 173/118 A bit too high for this person (she was a nurse practitioner). We tried to explain to her about Lori's POTS but she was one of the medical professionals that didn't listen. We told her Lori was under the care of a Cardiologist and she was aware of Lori's high BP. She asked us what Lori's target BP was. We told her the gaol is high enough not to pass out but low enough not to stroke out. She insisted Lori's cardiologist had to set a single target BP for us to follow and inferred that we did not know what we were talking about. (If you could see just how in tune and up to date we are with all of Lori's conditions you would realize just how ridiculous that is). She said little more and we were on our way to the chest x-ray.

Before we went to get the x-ray we went back to see the 1st nurse from earlier that day. We told her what happened and expressed our concerns that the surgery would be canceled. She checked the computer and said there was nothing entered by the other person that would mean we had to cancel the surgery. She also said no cardio clearance was noted. We went to the x-ray and went home, thinking we were all set to go.

Wednesday afternoon we get a call from the ENT's office. "The hospital wont do the surgery without a clearance from Lori's cardiologist." Great. Fortunately the person at the ENT's office said she would take care of getting us the appointment with our cardiologist right away. She called back a bit later with an appointment for 1st thing on Thursday. Whew. No problem we figured. Thursday morning gives us plenty of time to get clearance to the hospital by Friday afternoon (with the surgery scheduled for 9:30 Monday everything had to be in place by 4:00 Friday)

The cardiologist was great (she always is) She did an EKG and an exam. I asked about the results of the EKG, if they were normal or not. She said "it's unchanged" Well we've been around enough to know "unchanged" is not the same as normal, so I clarified myself and asked again. She answered "Lori's EKGs are never normal. I just look to see if anything has changed from the last time." HA! Great stuff. So now we have what my dad called "Lori Normal" Too funny.

Anyway, the visit went well but the doctor said since it has been almost two years and Lori has such a sedentary lifestyle she needed to have a stress test done before she would give the clearance Lori needs for surgery. The Doctor assured us she could get it all done in the next 24 hours and the surgery would go on as planned... as long as the stress test results were OK.

So now it's Friday morning. We take the 1st appointment. 7:30 am. We have to do the test, get it read, and get the results to the ENT's office in time for them to pass along to the hospital before everyone shuts their phones off at 4:00. Anyone who has dealt with any doctor's office knows this may not be an easy task.

The test went OK. Of course it was a chemically induced test since there is no way Lori could do a treadmill. The whole thing took about 2 1/2 hours. It's almost 10:00. 6 hours to get it read, approved and sent away to be sent away. We make sure the correct information is on the chart and head home. About 2:00 we start getting antsy. Lots of phone calls later, at 3:40, we get the OK.

All the hurdles are jumped. Surgery is all set for Monday morning.



So... here we are. The surgery went fine. He did everything he hoped to do including removing Lori's hangy thing in her throat (the uvula), removing some of the soft palate in her throat and cauterizing her tonsils (they had shrunk in size to where they were hardly there). According to the doctor Lori should be able to go home as early as tonight but certainly by tomorrow morning. He doesn't know our Lori now does he.

It is now 9 hours after the surgery and Lori has yet to really come around. She is in a lot of pain and is throwing up. Due to the type of surgery when she throws up she throws up blood. Kinda freaky to see. The nurse said at best she will go home late tomorrow, and that's only if she does a complete 180 by morning. So it looks like I'll be setting up my office here in the hospital tomorrow. Hopefully Lori will do that complete turn around and we can get her out of here tomorrow evening. If not I guess it will be Wednesday. It never seems to go easy for her. I can only hope the surgery works and all this will be worth it.

If the surgery works and Lori can get some restful sleep it will still be some time before we know if her memory issues were from the sleep apnea or not. While we wait to find out I can only hope they don't get worse. If they do while at the same time she begins to get a more restful, restorative sleep then the only thing left is that dang Lupus. If that's the case, like most everything else Lupus related, there is no cure and only experimental treatments.

Fingers crossed...