Any medical diagnoses help appreciated

[Depleted]

This is a question for people who have experience in the medical field. I will be ignoring any "advice" given that talks about "spiritual," industrial, home remedies, or "I have a friend that fixes this kind of thing" kinds of advice. Truthfully, I only have one symptom to go on and that's never enough to try and figure out a bigger cause. And, honestly, this isn't a marital problem. This is just something different and I'm worried it does have a medical cause that's being drowned out by all the other physical health problems going on now. This started happening a couple of years ago, so I don't think it's related to the heart attack or after-effects.

Hubby and I have always trusted each other. And then something changed. He still trusts me on the big things -- I love him dearly, I would do anything to help him, I will stick by him, I am sticking by God too. Those kinds of things.

But it's weird little things I tell him he simply immediately dismisses, like I couldn't possibly be right about something like that. Three examples, but understand this has been going on for a couple of years, and his heart attack was last November, so I don't think it is related.

1. We have a lilac bush and a butterfly bush. The flowers are roughly the same color, bunch together about the same, but lilac blooms in April and butterfly bushes don't start blooming until June. Also butterfly bushes flowers are in smaller/daintier bunches. (The head of the blooms are smaller and come to a point, while a lilac's flower head is bigger, fatter and more oval shape.) Had he been home this spring, he would have easily picked out the bush that flowered in April was our lilac. It's familiar enough to him, that that would be a given. But he's in a rehab center that had lilac bushes, smaller than ours (more the size of our butterfly bush), And he told me they had butterfly bushes blooming. I could see a lilac bush at the center in bloom, so I knew what it was. He, not only wouldn't believe me, he absolutely insisted I was wrong and need to stop being right all the time. He dismissed me so quickly and so emphatically, and with a rational explanation. Where he used to work, there was a forsythia bush that bloomed a month ahead of time because it was right below a steam vent, so it's microclimate was perfect for coming out sooner. He was sure the butterfly bush did the same thing and I had to believe him. I trust him enough that I did, even though I was hurt that he dismissed me like I couldn't possibly ever be right.

Two weeks later the bushes were in bloom when he went outside for the first time, so I should him the bush. He asked which kind of bush it was, so I told him lilac. Then he got embarrassed because the one he was looking at was too.

2. His room is close enough to the corner of a street that he can look out at the scenery and red light. Across the street -- easily seen, even when the trees are in full bloom -- is an open parking lot to the VA Hospital. It's for staff parking. To his right, is the garage to the VA hospital. He's been going to that hospital for a decade, so he parks in that garage. He spent from the middle of January to March 4 in that hospital, so he knows I kept parking in that same garage. One day there was a huge traffic jam down to the third level of the garage (which only has four levels.) No cars were moving at all, however, the cars behind me kept disappearing. Finally I figured out they were going out a side door that's usually blocked out, so I went through it too, without knowing where it would take me. THAT parking lot. I was tickled, because I just skirted a line of parking lot traffic jam where no cars were budging and got to the front of the line easily. So I showed him that parking lot, and he didn't believe it was connected to the hospital. The name of the hospital is on the top of the garage where he can read it. He still didn't believe me. He dismissed me. Across that parking lot is an industrial brick building with chimneys that vent steam. He thought it was probably where the hospital and his rehab had the laundry done. I think that's cool he figured that out (steamfitter and all, so I can see his mind working out how the steam system works in all three building as an exerciser in his mind.) And I told him that light he sees is the way I go home and get there every day. If he could sit up higher or could get the bed a bit taller, I'd wave at him, but he can't quite see cars at the light. Only trucks. He hasn't believe me at all, until last week, when he finally put it all together he knows that intersection. (He's happy he's in a spot he knows.) Why would I lie? How could I get that wrong? It hurts that he simply dismisses what I say like that, until he figures out I wasn't pulling his leg. I've talked to him about this, but because he had delirium in January, he gets really worried he still has it, so he rather not me correct him.

3. The big one. He had "indigestion" in a new way on a Tuesday. I asked him if maybe it wasn't a heart attack instead, and maybe he should get it checked out. No, no, no, no, no! I'm absolutely wrong. It can't be that, because he googled it. I really really trust him, so he had me convinced, except he kept getting worse as the days progressed, but No no no no no, it can't be that. I'm just wrong. He had me so convinced he was right that on Saturday when e finally let me take him to the hospital (and he had to wash his hair before he went noless, even though he was sweating profusely, and soaked in sweat when he got there -- shock -- when the doctors asked why he didn't get to the hospital quicker than that I told them he googled it and it was indigestion. Two doctors had to look at me like I was nuts, before it dawned on me he was wrong.

This isn't him. Or, it isn't how he used to be. We accept I get stuff wrong sometimes, but not to the point that everything I say is wrong automatically. This is something weird going on in his mind and I don't know what it is. I know what it isn't. It's not dementia. This isn't memory loss. He simply thinks I'm always wrong all the time. This IS something and it scares me.

Does anyone have any guesses what this could be? I'm not used to being considered totally wrong as an assumption only to taken off that judgement after it's proven I'm not wrong. He used to assume I'm right, until otherwise proven (unless relate to directions. If I tell you to turn left, turn right. I'm horrible with directions. lol)

He is also sure I need to be right at all cost. Maybe I was when we were first married. I don't remember if I was, it was so long ago. Even if I ever was like that, I dropped it simply because he's usually right, so there was no reason to prove I was when I probably wasn't. I don't care if I'm right or wrong. I care if I'm being listened to. He's not doing that anymore. We used to be a team. He was right most of the time, and I was just right a majority of times. Now he is right all the time and I'm wrong all the time. I'm not a ditz. I don't nag him until he believe me. But he stopped believing me on some of the sillier things in life. BUT that heart attack wasn't silly.

What is that? And assuming there are probably other symptoms if you can think of one, let me know. Maybe he has those too, but I don't consider them symptoms.

He has to believe me again, because he cant take blood thinners anymore so he has a 5%-7% chance of having a stroke in any given year. If he does, he has to believe me we have to go to the hospital NOW -- not four days from now! Amf whatever has changed in him, he will never believe it was a stroke until it's proven. It is already proven he has had mini strokes in the past, but he still won't believe it.

What's wrong with him? Anyone know?

 

[wwjd_kilden]

Hmmm. Judging by what some others have been writing in other (unrelated) threads, some people just get like that as they grow older (having to prove others wrong that is). Maybe it's just his way of reacting to everything that's happened?

Does he tend to forget stuff? ie where he put something he was just holding in his hand
(That is, any more than us average forgetful people )

 

[Miri]

Hi Depleted, I honestly don't know what is wrong with John, but I can tell you of my own
experiences if this helps at all.

As you know my aunt has been really ill she spent the best part of 4.5 months in
hosp and rehab beds last year. The last time she was in hosp for 12 weeks only
coming out at start of Jan this year.

During her times in hosp and the rehab place she got very confused, forgetful,
deleruim, argumentative, would swear black was white shouty, seemed to twist conversations
around. Did not seem to have any empathy and quiet honesty it was like she was a different person.

She had various issues, water infections, reactions to antibiotics, low oxygen, high
carbon dioxide levels, high potassium levels, blood work generally messed up, problems
with low blood sugar levels she has diabetes. Any one of these can impact on the brain function.

I did wonder if there might have been some dementia but I felt with certainty that
the medical issues were playing a big part in her behaviour.

It also came to light during brain scans, that at some point in the past. She has had two
very small bleeds on the brain, very mild stokes, but I was told any symptoms she may have
had would have been so mild that there is no way anyone would have known she had these
strokes.

When she came back home her behaviour was very unpredictable for a couple of months.
Plus she was having hallucinations upon waking up and first thing in the morning.

During follow up out patient appointments it became apparent that the low oxygen high
carbon dioxide levels were still a problem and she was diagnosed with COPD. So now we have
oxygen at home. Her mental abilities have improved but there is still moments where things
just seem strange, a little like you describe. Plus there are certain things she just has lost
the ability to deal with, like understanding the value of any money she is unable to
logical see situations for what they are. She also gets things confused which are similar
in appearance, but this is improving a lot.

Last week we had a visit by a physiologist from a memory clinic. They asses people's
mental capacity following strokes etc, but also diagnose dementia and other things
which may impact on cognitive ability. (I was tempted to ask for a test myself as I
think I am slowly going bonkers ).

The tests he gave my aunt were really interesting, she had to do things like write a sentence
with certain words in it, copy a shape and draw it out. Name items beginning with various
letters of the alphabet, remember an address then repeat it later in the test. There was
also a little simple maths like deduct 7 from 100, then keep deducting 7 etc. Plus some
word association questions, like apples and oranges are both....fruit etc. Plus point to shapes
and say what they look like. Name pictures of animals.

The first test was the bog standard test given to everyone she got 26 out of 30. He said
a score below 26 would indicate vascular dementia. Then she got right into it so he gave her the
longer test usually given to people who hold a driving licence. I think it is designed
to test concentration as much as anything else. She got 85 out of 100. He said anything
below 82 would indicate dementia.

He concluded she does not have vascular dementia but probably the mild strokes she has had mean
she has some mild cognitive impairment. He also said that when her oxygen levels were
low, blood sugar levels low and water infections etc, that these would all have impacted
on her cognitive abilities and could have made it appear as if she had dementia while she
was in hospital, but really it was just the medical things going on which were causing the
main problems them.

Im glad she doesn't have dementia, but I will always have to keep an eye on her and
take control of certain situations which I know she is not capable of dealing with.

She has improved vastly since April mentally it's just taken a while. I must admit I assumed
when she was discharged from hospital at start of January, that most of the medical issues
would have been resolved. But looking back it still took until now for all of the medical
problems to be resolved and for her normal cognitive function to return. (That is normal
for her). I really had no idea how a lengthy hospital stay can take a while to get over
both physically and mentally.


Maybe it will just take a while for John's body and mind to recover fully. He has been through a
lot. The low blood count, heart attack, surgery etc would all have caused low oxygen levels
which probably affected his thinking. Messed up blood chemistry also takes its toil too.
He is probably still very much recovering from all of this and while its easy to see the external
recovery taking place, it's not possible to see the recovery taking place internally.

In my Aunt's case there was also an element of frustration at not being in control and
of everyone telling her what to do and what not to do. As she has improved I have had to
learn to relax a little and not be so controlling and allow her to have some of her independence
back, both in what she does and also in her ability to communicate with people.

So for example for the last year I've had to make all this decisions, chase up all the doctors,
do her talking for her when she couldn't. So for me it became second nature, only I did not
realise how frustrated she felt by this as she has gradually improved. So now I am learning
to take a few steps back and allow my aunt to think for herself and speak for herself.
But still have to step in when it is appropriate.

Im not sure if any of this helps, maybe not at all. But it might give you different angles
to consider and come at the situation from.

Chin up.

 

[Miri]

Sorry I forgot to add, if the heart attack was due to blocked arteries,
possibly he might have had lower than normal oxygen levels for a while
prior to the heart attack. In the case of my aunt they speculated she may have
had COPD for a couple of years before it was diagnosed. Which would have
explained some of her behaviour prior.

 

[Miri]

Ppps my aunt didn't believe she had some mini strokes either for ages. It's only
recently she has come to realise what this means. The brain scans were conclusive
though.

 

[Depleted]

I've learned a lot about dementia because of Dad. Dementia isn't "that's a butterfly bush, not a lilac." Dementia is "we don't have and never have had either bush ever. Period." Dementia is "we never went to Cape May for vacation. I have no idea why you would think we did." (We have. He remembers. lol) Dementia isn't "I forgot where I laid down my keys." Dementia is "I don't have keys to that car. It's not my car." (It was Dad's car for eight years and sat in his garage, because he forgot he had a garage, which was in the basement of his house. He always went out the garage door, but once he forgot he had a garage, he couldn't go out. Not even out that door he was looking at while on the phone talking to us.)

The subtract seven from 100 is a dementia test. 93 should be the first answer. 94 or 92 are acceptable answers. If the person says any number in the 90's and then corrects himself/herself, that is a good answer. Dementia is no answer. Just this baffled look that someone would ask such a silly question, as if the question itself makes any kind of sense.

But you're right. "Remember these three phrases: blacktop, red brick and white house. I'm going to ask you to repeat them again in three times, once immediately, once in five minutes, and once in an hour. That's blacktop, red brick, and white house. Got that? Good! What are those three phrases?" is also a test. I don't know what it tests, but John failed that back in 2002, because he has had brain fog for that long. (And THAT he remembers.) He didn't fail it just the third time. He failed it the first time. He couldn't get past "black."

Worse yet, the doctor giving him that test lied. When John failed, the doctor finished the test for him. He told John the answers and marked it down the sheet that John answered each time. He was a doctor hired by SSDI. (Social Security Disability. I think the I means Insurance, but I never bothered learning what it meant. lol) John lost six months of back pay because the doctor lied, but John was devastated he couldn't remember. I wasn't in the room with him at the time of the test (waited in the waiting room), but John was storming back to our car while telling me, and burst out crying in the middle of one of Philly's busier side streets/bus routes. I say I don't cry often as a joke in part because John really rarely cries. He didn't even cry at his mother's funeral, and yet he burst out crying then. Real tears, and even when he does cry, he rarely gets tears. (I had to keep telling his nurses he was crying when they put him in the torture chair -- now a place he likes -- because he made all the gestures of someone crying, couldn't talk with the vent down his throat, but no tears, so it looks like someone having a temper tantrum. Not someone who hurts terribly.)

Back then he was going through chemo for Hep C. Hep C gives brain fog. Such a deep brain fog that either those car keys need to be where they're supposed to be or someone else has to find them. And a tiredness so wearying it's called "fatigue." That's why most people find out they have Hep C.

We had a pipe break. John's a steamfitter, so knows how to fix a pipe, but the pipe was in the ceiling. It wasn't that he couldn't fix it. It's a half hour job for someone who knows how to do it. It was the two steps on the ladder that did him in. He didn't have the energy to go up them.

But the brain fog was so bad, he went from someone who spent four hours every night studying scripture, to someone who couldn't remember the beginning of the verse by the time he finished reading the end of the verse.

And once the Hep C was treated, his lack of energy and the side effects of treatment had been so bad, we both missed he also had diabetes. And then he started stumbling after treatment. (Polyneuropathy numbed the front of his feet. But he also gets disoriented if he turns too quickly.) And the brain fog never lifted. And then he started blurting out words he knows better than to ever say around me. (We know all the curse words and use them as needed -- hit a thumb with a hammer and we're going to curse. Not as in we just add them into our everyday speech.) But one word I absolutely despise because it is too vulgar and that's the word he'd blurt. NOT him! But funny thing, to avoid saying that word, he somehow trained the brain to blurt "Sorry. Sorrysorrysorrry." lol

The brain fog never lifted, we're broke, so he gets all his medical care through the VA for just the cost of prescriptions at $8 per. There is one disease WHO, the CDC, and every other government sponsored health group acknowledges, but that VA -- CFS. (Chronic Fatigue Syndrome.) John was exposed to jet fuel fumes while cleaning out an empty tank on an aircraft carrier when he was about 19. The fumes made him so high and so numb, he never noticed what else they were doing while he was in that tank. He went up for chow and the guy behind him in line told him he had blood on his shirt. When he looked down, it wasn't a little blood. It was spots of blood throughout his shirt. The fumes burnt clear through his skin. And that's the last thing he remembers before waking up in a hospital in Germany. (Only helicopter ride he's ever had, and he doesn't remember it.) Since then he's been sensitive to chemicals. He'll break out in a rash while using bleach to clean in the kitchen sometimes.

Well, chemo is chemicals and we think the very therapy that saved his liver from dying is what caused the CFS, but we can't even get anyone to say he has CFS. (Advantage is they'll test for everything else that might cause fatigue, so he finally believes me -- or does he again? -- he has sleep apnea. And a CPAP gave him the ability to study the Bible a whole 15 minutes now.)

But all that to say, yes, he does have memory issues. That's been proven long ago, so maybe it's connected. Maybe those mini strokes added to it, because whenever he had them it was before his heart attack, so that could explain the changes too.

But knowing this, what do I do about it? So what? He didn't believe it was a lilac bush. His nurses get angry with him because he can't tell the difference between gas and a poop coming, so they've put a commode in his room because they don't want the hassle of cleaning him up after the fact. (And, if they use a bedpan, he's stuck lying on that so long that his back starts spasming. He's clocked it. Half an hour to get him off it.) He can barely get out of his bed, so the commode merely reminds him how helpless he is. His bed sore is strategically placed where sitting causes great pain, yet he has to sit in a wheelchair to strengthen his swallowing muscles. They tell him "one hour" which usually means "1.5 hours." They tell him "2 hours" which has been three at times. It HURTS! Try sitting when you have a hole with absolutely no flesh involved that goes 4-8 inches deep in your sitter. (It dug into the inside of his pelvic bone. THAT deep, and I didn't even think the human body had that deep right there.) And now the wound vac is too complicated for most of the nurses to want to learn, (I just figured it out two days ago and it's not my job), so they want to remove it and opt for cleaning his wound three times a day.

Cleaning his wound causes him enough pain even they know to give him oxy half an hour before doing it. He looks forward to Sundays because it's the only day of the week where the wound hasn't been cleaned in a whole three days! It HURTS! And this said by a guy who was willing to put up with a world of hurt for FOUR days in hopes the "indigestion" would get better. It hurts worse than a heart attack on Day Two!

My goal is to get him home and let him not face doctors for quite some time, but if I don't deal with what's wrong with him, that can't happen. If I do that I'm causing him mental pain he already has enough of already. So I really don't know if I should bring this up so the doctors know or let it go.

He just hit, "I never expected to be this sick. I'm so sorry to do this to you. I hate this!" (I'm three months past where he is simply because I was awake those three months he slept.) I know there is something else going on. I'm worried he won't listen if he does have a stroke, just because he's set in this mindset that I'm always wrong.

But the other choice is to make him face one other thing he doesn't know is a problem. And I'm sitting here still wondering if I should remind the doctor that he needs to get off that foley! (She forgot and John doesn't want to bring it up.) More torture for him if he does. If he doesn't, then he gets the joy of learning how to catheterize himself, because God help us all, if I get that duty. I can't even get his wheelchair through a door without ramming it into the door frame. What would I do with a tube going up THERE four times a day?

(And the part that bothers me the most -- all this while knowing I'm so happy he's passed the truly horrific stuff. This is the EASY stuff!)

 

[wwjd_kilden]

I'm sorry he is going through all of that

Is there any way one could use a pillow (i.e. like the ones for haemorrhoids) to take pressure off the area?

 

[Miri]

Hi Lyn, it all sounds so hard,

He has come such a long way and he still has a while to go. Honest I really feel for
you both.

Its no wonder that he is having problems, or even if he is getting upset/frustrated etc.
It is probably still early days to be figuring out with any certainty the issues you mention.
The tiredness alone and pain are enough to send anyone a bit strange or make them
act a bit out of character. All you can do really is continue to take things one day at a
time.

Still praying for you,

 

[oldethennew]

insist that he get OFF of the foley...

when we are put in the position of being the ONLY rock, then the cradle will start to fall -

pray to bring John back into Jesus' reality of faith and trust, and hope, because this will be the absolutely
ONLY WAY for you both to find true deliverance and healing..,,

 

[Depleted]

I'm sorry he is going through all of that

Is there any way one could use a pillow (i.e. like the ones for haemorrhoids) to take pressure off the area?

Donut pillow. We have one, so I asked. Ends up the theory behind those was wrong, so they don't do them anymore. (I know. Don't keep up with science for a couple of decades and every "fact" changes. lol) They decrease circulation around the area thus causing a delay in recovering.

But, I did go to visit him and good news. Their plan to get rid of the wound vac is gone. "Lollipop." My latest "that word ain't how normal people talk" medical word. It's a cotton swab with some kind of substance on it that dries the skin so well, he can no longer sweat the tape off. Apparently, he dared to sweat on his leg, which loosened the suction to the tube part of the "vac," so the vac became useless -- unable to suck.

He spent the last five days not daring to move off his back in bed because every time he did, the machine beeped nonstop. (Try lying on your back while sleeping when you're able to move in your sleep. He was just stubborn enough to do it on his third night of trying. lol) Now he's free to get off his wound again and lie on his side.

And he just walked (with his walker) around the PT room three times. That's about 50 feet. He was so excited he called to tell me. (Neither of us are phone people, so calling is a big deal. lol)

We've seen men walking down the long hallways in their walkers with a nurse pushing a huge chair behind and another nurse pulling along the IVs. I first saw that the second week John was in the first ICU and dreamed that be him someday. He saw it at the VA and has that same dream. (He's poleless now. No IVs and no feed bag. That's big!) But, today John was waddling along in his walker when a new guy came to PT and he heard the guy say, "I want to do that one day."

John just became someone else's dream! It feels good to be that instead of Sympathy Guy.

 

[Depleted]

Hi Lyn, it all sounds so hard,

He has come such a long way and he still has a while to go. Honest I really feel for
you both.

Its no wonder that he is having problems, or even if he is getting upset/frustrated etc.
It is probably still early days to be figuring out with any certainty the issues you mention.
The tiredness alone and pain are enough to send anyone a bit strange or make them
act a bit out of character. All you can do really is continue to take things one day at a
time.

Still praying for you,

But that one started happening a year or two before all this happened. Having realized he had diabetes the entire time he was on chemo for the Hep C and how much damage it caused because we didn't know the tingly feeling in his legs wasn't a symptom from chemo caused permanent nerve damage. My fear is I'm the only one that is noticing something that can be treated or it might get worse later.

 

[Depleted]

insist that he get OFF of the foley...

when we are put in the position of being the ONLY rock, then the cradle will start to fall -

pray to bring John back into Jesus' reality of faith and trust, and hope, because this will be the absolutely
ONLY WAY for you both to find true deliverance and healing..,,

A couple of days ago, after John went to the caf for lunch (which is also a big deal, because he has to sit still to fit under the table, and the wound always hurts, so he twitches), I took him for a stroll. Suddenly something was wrong. He hurt and hurt bad. We found a semi-private spot (simply because no one wants to play around with where the foley goes in public) and he tried adjusting, but it didn't work, so he had me rush him to his room.

I can tell he's in pain by his body language even while pushing him. This was very bad. It was also the same body language he used both times they've taken him off the foley onto a catheter. (The first time he was sedated, and I still saw the pain in his body language. He doesn't have many memories of back then, but he remembers that.)

Ends up there was just a kink. But you're telling someone who just freshly remembers how bad it hurts to make him hurt that much again. And for three days. And when the doctor is pretty sure his bladder will never function again. This doctor usually only gives the good news. (The nurses give the bad news.) But she flubbed because she told us the truth about him and that foley. The bladder has been taught it's not needed for six months now. It's unlikely it will know what to do again. (Possible, since the only muscle that remembered how to work four months ago was his right index finger, and now all his muscles work but his two pinkies.)

He can give vivid details every time the foley kinks or he was catheterized. And my brother told me he was catheterized once and the only reason the nurse isn't dead was because he couldn't reach her. Both of them tell it's exactly what it sounds like it ought to be -- they're shoving a big tube up a small urethra. It HURTS!

Add to that, his first symptom is it feels like he hasn't peed in three days, but the technicians keep doing an ultrasound to see if it's full and tell him it's not. He has to complain, so they try again, and sure enough, then they decide it's full. It was full the first time. And to find out it's full they push the ultrasound imaging device right into that spot that already signals "I'm full," so it's pain, wait until a nurse finally has time to come, humiliation, more pain, and then... viola! More pain for your patience.

I can't do that to him. Like deciding when I want to pull a molar out of his mouth. His body. He gets to decide. He'll decide, but he needs to brace for it, because he freshly remembers how much it hurts now more than I do.

John and I do have faith and trust in Jesus. We don't have to come back. We never left.

 

[oldethennew]

two days ago I was rendered totally helpless, my back/spine went into totally collapse -
I was literally paralyzed...hubby had gone to the store and when he got back, he had
'to get a ladder and climb in our bedroom window because I couldn't move
without excruciating pain to the point of un-consconciousness...

and yet, here I am today, sitting at the puter and typing what my Lord has told me to write.,.,.

every one of us, on our own, must dig into our Faith and draw what we can along with our own will-power...