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Post-Mayo Clinic

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Thinking it Over

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm. That’s it for tonight.

Mayo Clinic Day 4

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Day 4 at Mayo Clinic had its up and downs, but was also the day with the most accomplishments.

The day started early – third day in a row that we were up, fed, and on the bus shortly after 7. Soon after arriving Dennis was met by the professional doing his testing and disappeared for a couple hours. He came out for a quick snack and then went back for another two hours. I thought for sure he would be exhausted by then. I was called back for a brief discussion with him and one of the testing doctors and then we rode the bus back to the motel.

While the husband was getting tested this morning I made a trip to the business office to check on the infamous pre-authorization request for the PET scan (still pending) and then wandered around looking at all the stunning artwork and views of and from the various buildings. So much marble and granite, so many windows, visitors sitting down at the grand piano in the lobby and playing a tune, people of all ages and cultures walking past, and always a new tunnel in the subway and a decision to make to walk it or not – I could have spent hours. (Some photos at end of post.)

To give Dennis time for a nap, we decided to take the car to the next test instead of riding the bus. The PET scan was scheduled for 4:50 and Dennis would be fasting until it was over. We knew he would need to eat soon after so Mom came along with us and we planned to go right to a restaurant afterwards.

Every time I checked on the request for authorization, the answer was the same. T 4:30 it was still pending and no one could figure out the persistent problem or get satisfactory answers. It was the most expensive test but the most important, so we paid for it to make sure he was able to take it. Insurance will get billed but we have no clue whether or not they will pay anything on it. Oh well.

Mom and I read our books and waited while the husband had his head scanned. The books we’re working on are both very riveting and we wouldn’t have minded waiting a little longer. As it was, the test was over quickly and we were off to have supper at “The Porch”, a converted railroad station family style restaurant.

Tomorrow will wind up the Mayo experience for this time. One test remains, the lumbar tap. I don’t know if I’m excited about this one or not. It’s the most invasive and has a bit more risk to it but is also one that the husband thinks could make a difference in some of his symptoms. It’s at 9 am. All that remains after that is the meeting with our primary specialist Dr. Jones at 3 pm. They expect he will have results from everything to discuss with us. I am so used to waiting a long time to get told of results so I will be surprised if it happens. We will drive home immediately after that.

Something we all think about as we watch the crowds of people at the clinic, on the bus, in the waiting rooms – they are all living out their private battles with illnesses that have happened upon them and changed their lives. Things are not normal anymore for them. They all have stories. They all wonder what their future will hold. Just sayin’, we are not alone by any means.

Mayo Clinic Day 3

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Please tear my hair
out in clumps and put me in a straight jacket. I’ve been talking to my
insurance company.

Me: Yes, hello. I’m calling to check on an authorization for a PET scan for my husband Dennis. Where do we stand on this request?

Insurance company: I can check on that for you, just a moment… I don’t see a request for a PET scan in the notes. I see four other authorizations, blah, blah, blah…

Me: Mayo Clinic sent our Dr.’s notes to you yesterday, and they were told the decision was pending. It’s an out of network issue and it’s complicated. Do you have someone who handles these cases that I can talk to? (I give them a case number and the history
of the last five days phone calls.)

Me: (Calling Mayo
Clinic business desk in a panic.) I’ve just called my insurance to check on the authorization, as you suggested, and they don’t know anything about a request for a PET scan. It’s supposed to happen tomorrow. What can I do?

Insurance company: No, I can’t say that we do and the notes we have don’t mention a PET scan at all.  (She tries to find more
information but comes back with the same answer.)

Clinic rep: We called your insurance at 8 am this morning to see if the authorization was given. They did get our fax yesterday about the Dr.’s evaluation and the matter is still pending. We should know something today.

Me: Why are they not able to find this anywhere in his record? They have the other authorizations but nothing for the PET scan. They say they don’t even have case numbers like the one I was told to give them.

Clinic rep: (explains
all kinds of stuff about a special review board for out of network
authorizations) We gave them the Dr.’s recommendations and I’m sure they will be getting back to us. Don’t worry, we have all day today and most of tomorrow to work this out. It will get resolved.

So I called the insurance company again, got a different rep who said basically the same thing with the added information that she had never heard of a special review board and she would know if there was one (she said). I made sure she knew that this was getting very mysterious and confusing to get two completely conflicting stories about the status of the request. She assured me they did not have a request recorded – but I could get one started. She told me how.

I didn’t want to call the clinic again, but I did. No surprises there – the same report. At least everyone is consistent. I guessed it was up to me. Which story did I want to believe? So, I went with the clinic, and am praying that they were right.  I really did not want to make any more calls. Tomorrow, we will find out if that was a good decision.

A bright spot in the day came when the scheduler called mid-morning and told us we had an appointment for tomorrow 7 am for the neuro-psych evaluation, the one we had been on standby for. We no longer had to keep showing up and waiting for a cancellation. The lumbar puncture was rescheduled for Friday morning and will be followed by an afternoon wrap up with Dr. Jones. We are going home on Friday!

But will probably be coming back in a month or so. Whatever. Maybe by then we will have new insurance, the kind that’s not so special that no one knows about it. Just sayin’…

Mayo Clinic Day 2

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I am beginning to know my way around, where the different buildings are, where to pick up the shuttle, where to go to eat. The husband is getting better at it too, but he doesn’t go anywhere alone and likes to have someone to follow.

Our appointments were not scheduled the way we would have wished but we were told it was possible to change some of them. The schedulers told us “Be a checker!” and wrote it on our instruction sheet. I had to ask what that meant. It’s their suggestion that you be on hand for the test you want to get, in case someone cancels. It’s like “standby” at the airport. We were on hand at 7am and 12 pm, the designated times, with no success. 

After our morning wait, we went down to the business office and asked about our insurance authorization for the needed PET scan. It was not a busy place and a very competent person helped us right away. She made some calls and told me that Dr. Jones’s report had been sent to the insurance company. I will call tomorrow morning and see if it has had any effect.

Going back and forth as many times as we did gave us some good experience riding the shuttle. It is easier and cheaper than driving and will be our main mode of transportation.

We are finding ourselves very easy to entertain. Today we shopped at Walmart, took naps, read, watched TV and ate our snacks in the room. We’re doing one meal a day at a restaurant. Tonight’s choice was Outback.

I am trying to resurrect memories of my year in Rochester while in nursing school. It was so long ago that I’m afraid my dorm attached to Methodist Hospital has been torn down and replaced by some larger, imposing building. I couldn’t find it. Almost everything downtown around the Clinic itself looks unfamiliar to me, although the main street, Broadway, still had many older buildings.

I was relieved to find one place was much the same. Silver Lake park was still there. The lake itself was part of the Zumbro River and there was a power plant connected in some way with it. Because the water was warmed by the power plant it didn’t ice over as quickly as other bodies of water in the area. It was home to great multitudes of Canadian geese all year round and quite a sight to see. I remember times when it was cold enough to warrant goose rescue attempts for those animals that were getting frozen into the ice. The geese are still there, along with a sign asking people not to feed them. A large goose produces 3 lbs. of poop per day and all that creates a significant bacteria problem for the lake.

Tomorrow we will be on standby for the neuro-psych evaluation again, and hopefully will get time to visit my Aunt Evelyn in the afternoon. The husband (and Mom and I) are worried about Julia. Hurricane Florence is heading toward North Carolina and Greensboro is in the center of the all important cone of possibility. We know what hurricanes are like… This world is full of things we can’t control. How plain that is. Just sayin’…

He Is Retiring!

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June 27, 2018

My thinking is overwhelmed. It is the night before the husband’s retirement celebration and I am nervously trying to think through all his medical concerns. I know I will be asked tomorrow about how he is faring and what news we have. It is complicated.

The doctor we talked to today spoke so fast and jumped from one topic to another without explaining the relationship. I had to go home and google the condition to understand much of what he was saying. It was like he was on speed or something. The short of it is that the husband does have a type of heart failure, but not the kind that’s caused by a weak heart muscle. It is the kind where the muscle can’t relax. It is stiffened, and that can be causally related to hypertension (which he has) or sleep apnea (which I think he has) or a few other things like A fib (which he doesn’t have). It can be managed by treating the symptoms. He is already doing that as well as he can.

That is not to say that he doesn’t have the other condition (NPH), but the consensus is that he should be seen for that diagnosis at Mayo Clinic when we go up north. If he has NPH, he will need the specialists they have there. My head is swimming from being on the internet all evening looking at sleep apnea home tests and CPAP machines and applications for an appointment at the Clinic. I don’t even want to figure out how these things are going to fit in the schedule of the next two weeks before I’d like us to be heading out. It’s too much.

Both daughters have their tickets for the family reunion. People are posting their plans to attend. I am just hoping to be there and not in a hospital somewhere with the husband. We talk daily with my mom and I can tell she is a bit skeptical and wonders if we can pull this off. I’m trusting my master planner has it all figured out, and I’m going to be okay with the circumstances, as he arranges them. I think I appear calm, generally, but the fact that I keep going to the refrigerator, or the cookie can is evidence of what is under the surface. Food doesn’t exactly help how I feel but I crave it anyway.

There doesn’t seem to be much time between trips these days. Trips taking the husband to work, trips to the doctor’s office, trips to Good Will, trips to the store. The good thing about having only one vehicle is that the husband and I are together a lot, coming and going places. We are talking in a different way, or rather about different things than usual. Instead of him talking about fans and ventilation (thumbs down in my book) we talk about how he feels about retirement, and the preparations for moving and other stuff I find interesting and necessary. This is a good thing.

Is It NPH?

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June 13, 2018

The husband is so excited that there might be an explanation for his decline of late, and more than excited that there may be something to reverse it. He spent hours tonight watching videos about NPH by people who’ve had it and doctors who have treated it. It started like this…

Yesterday at the doctor’s office they did the routine things, weight, BP, EKG and then Dr. Sanchez came in and started talking with him about how he was feeling, what medicines he was taking, etc… I listened as he gave the doctor a “sort of” picture of his fatigue, discomfort, etc… but there came a spot where I had to tell the doctor that it was worse than what he was hearing. The husband doesn’t take walks, sleeps whenever he’s not moving, has no energy and all that.

After discussing sleep apnea and other possible causes of the complaints, the doctor asked me “Does he shuffle when he walks?” And of course, he does – like a woman nine months pregnant. Well, then he asked a couple of other questions and Dennis told him about his memory problems, and his urinary urgency, etc… and the doc said “You’ve got NPH.” I had never heard of it. It’s very interesting. And this doc knew a lot about it, even though it’s not very common, because his father had experienced it and been treated successfully.

NPH stands for normal pressure hydrocephalus. Hydrocephalus that we usually see is with babies who have the large head because of the excess fluid around and in their brain. But something like that happens with some adults too, usually people over 60. The treatment for this, no matter who has it, is to place a shunt to take the fluid away so it doesn’t cause pressure on the brain. The three outstanding symptoms that almost everyone has are the shuffle walk, the memory loss, and the urinary problems. The test for it is a spinal tap. They remove some fluid and often the shuffle walk is gone. They compare the walking ability before and after and see if it improves. Isn’t that strange?

The doctor also wanted routine lab work, which we are both having done tomorrow, since I also have some ordered for my yearly physical. He will also get an echocardiogram and will have to make an appointment with his primary medical doctor. He has appointments with the dermatologist and the dentist next week so we are going to be busy going to doctors (not to mention I might have to go with Scottie for her procedure too).

We don’t know for sure that it’s NPH, but the husband has such a strong feeling that he does that he will be really disappointed if he doesn’t. If he does, this is pretty important. We’ve been feeling bad and a bit scared at how rapidly things have changed for him and praying for the wisdom and help to change things. We always thought it had more to do with his weight and inability to lose but maybe we’re being shown something we had never thought of or known about. Kind of exciting, except for the fact that there is also quite a risk with brain surgery.

There’s a lot online about NPH so if you want to follow along with us and be knowledgeable, just google it and you’ll find lots of info. I’ve been happy about the way Dennis and I have worked together lately, to manage the move, the changes in health, the prospect of retirement and lower income – we have a three way talk with God every morning about everything we can think about. Just saying that we pray doesn’t adequately describe it. It has been so good for us. We don’t know what the path ahead holds for us but as long as God is marking out the way, we are not afraid to follow.