June 1, 2018 - Hashimoto's Encephalopathy

Welcome to June in Dallas! We've had some abnormally high temperatures lately and the weather forecast is for more of the same. Methinks it's going to be a long hot summer.  However, that won't be a huge problem because last Friday we had the entire HVAC system replaced.  I was completely in awe of Jay's ability to negotiate with the salesman. He would not have been able to do that a month ago. When we saw Dr. Haq two weeks ago she said that his diagnosis of Moderate Cognitive Impairment could very have been incorrect.  She also told us that his antibodies were "off the charts."  Normal is 35 and his were over 800.  I will be forever grateful to Dr. Nooradeen and Dr. Tang for their tenacity in getting to the bottom of Jay's paranoia and psychosis.

This morning Jay was so much more enthusiastic about life and I'm over the moon about it. He talked about our car trip to Carmel but I think we should put that off for a little while due to the huge expense of the HVAC system and then two days later the replacement of our water heater. Hopefully, June will be a kinder, gentler month financially.

It's almost hard to believe that on May 1, Jay was admitted to the hospital and on suicide watch for two days.  I thought our life was pretty much over. But God, in His glorious goodness, had other plans.

We've not heard from Dr. Flippo since he was discharged from the hospital but I'm sure she'll want a PET scan this month.  And, of course, we need to deal with his port - either get it flushed once a month or have it removed, as I doubt there will be chemo in his life ever again.  That's not to say the chemo caused the Hashimoto's Encephalopathy but we just don't want to take the chance.

I've been walking two to three miles most days and have gone out to lunch with friends and even to dinner with another friend.  I'm not fearful of leaving him alone anymore.  

Of course, HE is an autoimmune condition and there might very well be setbacks but all in all, his mind is clear and that's a Very Good Thing!

May 22, 2018

Well, it's been two weeks since Jay was discharged from Baylor.  We saw Dr. Tang, the neurologist, yesterday and she was quite pleased with his progress.  He's pretty much a New Man! She's decreasing the amount of steroids from 60 mg per day to 40 mg per day.  We see her again on June 22 and if he's still with those horrible symptoms, she'll probably decrease him down to 20 mg per day.

He still has cognitive issues but they're mild.  No paranoia or psychosis whatsoever. I'll, of course, be watching him like a hawk for any of those signs and will report to Dr. Tang immediately.  It was so horrible for him having to deal with all that crapola.

We see Dr. Haq tomorrow.  Still haven't seen nor heard from Dr. Flippo.  I'm going to call and ask about having his port removed.  That should get her attention.

I don't know if we're going to take that trip to Carmel - he's still fearful of being far away from his doctors.  I'm not going to push him on it as I'll save PUSHING for a possible trip to Vermont in early November to see my family! I'll pick my battles!

May 11, 2018

What a difference a week makes!!  He was discharged last Sunday, May 6, after seeing Dr. Tang and Dr. Valazquez, an internist. Dr. Tang told us there were a few results pending from his spinal tap and they would probably take a couple of weeks.  Since it was "diagnostic exclusion" she's treating him for Hashimoto's Encephalopathy. She said we could leave after his IV of steroids.  Christy, the nurse, couldn't get a good vein probably because they'd been draining him of blood!!! I told her he had a port and she tried to access it but couldn't get a "blood return." She injected a clot buster and after an hour of percolating, she was successful.  We got home a little after three o'clock.  I got him settled in with his TV and went to pick up the prescriptions.

The change in him is quite dramatic.  He KNOWS this is home and he said he "loves" our home. His paranoia is gone! He's more upbeat than in a very long time and is jabbering about our trip to Carmel and points north.

We see Dr. Tang on May 21 and Dr. Haq or May 23.  At some point we'll probably see Dr. Flippo but we've not heard - I'll probably call on Monday to get him set up. We need to find out if he can have his port removed as we're just not going to do any more chemo.

I'm hopeful and have been reading so much about Hashimoto's Encephalopathy. Most likely he'll be gradually taken off the steroids and historically, the disease can go into remission and stay there for years!

We've been out to dinner a couple of times and he seems to be enjoying life much more than in the last several months.  What a blessing it is that we had such a diligent team of doctors trying to get to the bottom of his massive brain mess.

May 5, 2018

So, Jay's been in the hospital since Tuesday.  So far, he's had a CT scan, EEG, MRI, spinal tap and the usual blood and urine tests. Everything has come back negative but there are a few results pending from the spinal tap.  Since this is a process of elimination they "think" he "might" have Hashimoto's Encephalopathy.  They began treating him yesterday with an IV of steroids and they'll do that for three days. Once we go home, he can take it orally while being monitored weekly by the neurological team.  Naturally, there are side effects - agitation, confusion - and about two hours after his first IV of steroids yesterdays, he was very agitated and confused.  I'd left around two o'clock to get some chores done around the house but he call around four in quite a state, so I came back for a couple of hours to try to calm him.

When I got to his room, it was empty.  I checked the bathroom - no Jay.  Since his room is right next to the nurses' station, I got a nurse to help me search for him - she went one way an I went another.  I found him wandering the halls.  When Dr. Flippo arrived and I told her about it, she was not a happy person. She talked to all the nurses and aides and said she was going to escalate the incident as she wants me to feel comfortable in his care and treatment here.  She was worried he might get on the elevator and try to walk home.

I left for home around six thirty and got two more calls from a nurse telling me (1) he wouldn't take his meds and (2) he didn't think he was in his room and wanted to go back to his right room. Talking to him helped a little but when I got here this morning, I was told he woke up confused about once an hour all night.  The nurses were able to refocus him and he'd sleep again for another hour.

When I got here around eight this morning, he was anxious to tell me about his "travels" during the night - he went to Oklahoma and then to Rockford.  I tried to explain they were more than likely dreams but he said they seemed so real.

Just a few minutes ago, we had a "tele-psych" conference with a psychiatrist. It lasted less than thirty minutes but seemed to give Jay encouragement.  The doctor confirmed what I've been telling him - his brain didn't get scrambled overnight so it's going to take a little time to unscramble it. He took a lot of hope from the meeting and I'm encouraged by his hope!

He's been eating pretty good - for him - but since today is Cinco de Mayo, I'm going to run across the street and get him some tacos from Taco Bell.  I'm going to get some for the staff here as well as they're going above and beyond the call of duty in taking care of him.  This is a cancer floor and they have to deal with his memory issues.  They're Angels!

May 2, 2018

Well, the last few days have been jam packed with happenings.

Yesterday, Jay had an appointment with Dr. Flippo.  She asked if his confusion had decreased since it's been five weeks off chemo.  When we explained it had not and told her about recent events, she told him she wanted him to have a neurological evaluation to which he responded "I'll f****g kill myself before I do that."  Since he was in quite a rage with clenched fists and was speaking very loudly, she said "you're scaring me." She and I left the exam room and she told me she was going to call Dr. Haq to consult with her as to how to proceed.

After the consultation, she told us they'd decided it might be due to an infection and they wanted to rule that out so Jay was transported over to the ER at Baylor Plano.  Since they take "threats" seriously, he was put on suicide watch.  They ran blood and urine tests which showed no infection but they wanted more testing.  He finally got into a room around five o'clock.  Dr. Tang, a neurologist, visited with him for about thirty minutes and shortly after she left, he was transported for a CT scan so I left for home.

This morning, I got here at about nine o'clock and shortly after I got here, he/we had a video conference with Dr. Wright.  That lasted about an hour and she was somewhat encouraging.  He had an EEG this morning and now has spots of blue hair - looks trendy.  He said "I haven't eaten" anything but upon examining his breakfast tray, it was nearly empty. He's scheduled for an MRI of the head and that should be done in a little while.

He's still on suicide watch which means there's an aide with him at all times. Rather off putting for him but has to be done. I am totally convinced he'd never do harm to himself but the nurses can't do anything about removing the "sitter" unless they get orders from the doctor. Nurse Amy said she would let the attending physician know my feelings. Hopefully, they can remove the sitter.

During the video conference with Dr. Wright, she gave him several tests and he didn't do very well.  She said tests results showed there's "room in his brain" for improvement and is going to prescribe something to help him sleep and calm him down. That would certainly be a very good thing.

He'll probably be here until at least Friday but if they can help him that would be a huge blessing.

April 29, 2018

Sunday morning and here we are. I was able to actually get outside and walk on Friday and Saturday but that won't be the case today.

He wants to move back to our house in Real Dallas.  In fact, he's gone so far as to start taking artwork off the walls so we don't forget to bring them with us. I spend a lot of time putting things back when he's taken them off the wall.  I find the bottle of V8 next to his bed and the bottle of OJ on the floor in his office. I guess I should laugh but to me, it's just not at all funny.

He's obsessing about driving and says he feels like a prisoner. He got a little nasty after dinner yesterday and that really worried me. He said he was going to call his friend John to take him back to Real Dallas.

He's consumed with packing up the house and getting back to Real Dallas.  I don't know if it was a good idea or not, but I told him it was all taken care of - that the movers would move everything.

We're going to see our attorney tomorrow to get our estate planning documents executed. I'm not sure John will let him sign documents as he's going to ask him a few "simple" questions. There's not too much of a problem, really, since the only change in his documents was to remove his deceased sister. However, John recommended a trust in the event I predecease him and I'm not at all sure he'll be able to comprehend what John needs him to comprehend.

Tuesday morning bright and early we see Dr. Flippo after labs. She needs to prescribe something to calm his mind and I'm going to beg.  He's still hiding his wallet but the Tile Mate pretty much takes care of that.

I wish I had more time to  "vent" on this blog, but he really takes a lot of time.

*** Now it's nearly 5 o'clock and Jay's been attached to me all afternoon. I was able to do three loads of laundry this morning but once I took my shower and sat down, he sat right next to me.  He still wants to "pre-pack" for the move to the Real Dallas but I told him the [imaginary] movers would do all the packing.  I don't know if it's wrong for me to buy into his "reality" but at least he doesn't fight it. We watched Hallmark's The Beach House [Andee McDowell cannot act AT ALL so it wasn't all that good - very predictable].  Then we watched The Week Of on Netflix and Jay recognized all the music from Billy Joel so that was a good thing.

I wish I could sit down and have a one on one with God and get Jay's head straight but I guess Prayers are the only way to do it!

And Pray, I do!

April 22, 2018. What Glimmer of Hope?

It's been a week since my last post.  That little glimmer of hope I saw seems to have gone by the wayside.

Jay had labs on Tuesday and Friday.  On both days, his magnesium was low so he got 4 gms of magnesium each day which is a two hour infusion.  He always takes the infusions so well - he's definitely my hero in that regard.  He'll have labs again this Tuesday, the 24th, and if magnesium is low, another two hour infusion.  We don't see Dr. Flippo until May 1 after labs.

His cognition is really fragmented.  He's convinced we have two houses: one in Dallas and one in the Real Dallas. It's just impossible for me to convince him otherwise.

All day yesterday, he was extremely confused and worried and at points, terrified. Nothing would calm him down.  I gave him a Sam-E tablet three times yesterday hoping it would calm him.  On the news yesterday, there was a "story" about the fires in California late last year noting that insurance coverage would not cover the rebuilding of the homes lost in the fires.  For the rest of the evening, he was convinced we were going to go to jail because of insurance fraud, saying we have two houses covered by insurance illegally. I know he absorbs what's on television so no more Sopranos.

When we last saw Dr. Flippo, he told her he had no guns in the house; last evening, he told me he does have a gun in the house.  I've never seen anything more than a BB gun in this house, but he got my attention. I think we'll discuss it if his head clears up today.

This morning at about 6 o'clock, he came into my room with his flashlight shining in my face to see if I was awake - well, that'll do it! ;0)  He crawled into bed with me but neither of us was able to fall back to sleep.

Right now, he's in his office, eating orange and banana salad while watching the Sunday morning news shows.  The gal that plays Abby on NCIS is going to be on and he loves her.  Surprisingly, he remembered she was going to be on from the promo last week.

Before starting the chemo [after the radiation nearly two years ago], his cognition was not good, but the chemo has really exacerbated his condition.  I, of course, am feeling guilty because I encouraged him to do it, believing Dr. Flippo when she said she wanted him to have a "quality of life." I'm surely not blaming her - I should have done my homework.  But, people need to know how horrible it is to have a loved one having to go through this.  Dementia is horrible.  I hope and pray I can stay healthy and take care of him at home.