Pt. 2 - My 5-23 Hospitalization - Poor Care, The Stuff Nightmares Are Made Off...

[JudyJ]

Oh, brother!!!#!

So after receiving excellent care in the ER from a Doc whose Mother had passed away from PSP, and his nurse, who knew what PSP was from the ER Doc, I arrived on the Patient floor between 4-4:30 p.m.

My nurse came in and introduce herself, took my vitals, brought me some food, etc. But, then she pulled the curtain, closed the door, and that was that. Honestly.

The ER Doc told me specifically he talked to my Neuro and either my Neruo or one of his associates would stop by that evening to visit with me. Good; gave me comfort.

I have 2 meds I take in early in the evening and 2 at bedtime. I was getting increasingly uncomfortable and anxious because no one had seen me since I was dumped in that room, there seemed to be no plan in place, and I needed at least my evening meds.

I pushed the call light and in she popped. I told her my concerns. She told me "I can't help it if I have a Doc who likes to come in late and do his rounds. Until he sees you, I can't give you any meds." I told her that wasn't good enough, and not at least getting my meds was not helping stabilize me.

I also asked where my Neuro was and she didn't have a clue.

By 10:00 p.m. I was fit to be tied. I punched the light for her again and in she popped. I did not raise my voice whatsoever, but I was very blunt.

I told her I realized I was hospitalized for observation, but dumping me in a room, closing the curtain, and then closing the door was "UNOBSERVING" and what was it going to take to get observed and what in the hell was it going to take to get my meds?? She assured me 'the next shift would check on me to see if I was still having tremors'. I told her "By the way, I AM still having tremors, not as violent, but no one's asked, and I didn't know I was supposed to self-report". Geesh.

Now the nurse was in a puddle of tears - hey, wasn't that my prerogative?? I was laying there for 6 hours with NOTHING happening, which was driving my anxiety up there and hadn't had any of the meds I regularly take.

She said in hindsight she could've done a lot of things differently (no doubt) and she was pestering the doc on call, who liked to come in late at her own admission, to get my meds approved. I finally got them about 10:30. Having been around the block several times over, it did occur to me if I was pestering my nurse, with every justification, and she was pestering the Doc on staff, uh, he might not be very happy with me, sight unseen.

So, at 12:10 a.m., and just after I finally had fallen a sleep, he arrived in my room. I could feel his hostility from across the room.

He said it took so long to get to me because he had a hospital of people who were actually sick. I said "Are you implying I'm not?" He literally shrugged his shoulders. Going to be disrespectful here, but what a punk. I was there for over 8 hours for observation-his observation-and he just shows up and then insults me? He had a game face on before he hit the door.

He had me repeat what was going on with me. I asked whatever happened to my Neuro or his associate visiting me the evening before. He said I had it all wrong, that I would get whatever neuro was on call in the morning and it would probably not be Dr. Hungs. (BTW, my daughter was in the ER with me and heard the ER Doc say he would visit me that evening.)

He went on to tell me there would be no monitoring, observation, etc going on overnight. (In fact, my nurse went so far as to tell me the next shift would check on me once an hour "to make sure you're alive"; nice, how comforting!#). I again explained to him the serious symptoms happened while I was a sleep but no go. This Doctor, sorry he really was a punk, was having this discussion with me way away from my bed and by the door like I was yesterday's waste.

So, he said I'd see whatever Neuro was on call in the morning (tho my Doc is on staff there), but he especially wanted me to see the staff Psychiatrist because his 'gut' told him this was really a psychiatric case, not medical, and I was in fact having nightmares or night tremors causing the physical responses.

I told him I've discussed these dreams/physical symptoms with my own psychiatrist and if she thought there was a bigger problem to be brought forth, why didn't she? He said "Good question.". I've been seeing her for years. Now I'm getting downright mad bordering on furious cause I could see where this was going.

I also told him I've spoken many times with my Ortho and my Neuro about why pain creeps in my dreams or other physical manifestations and it's all about the central nervous system being distracted by day, but not by night, and you can experience the worst pain of all at rest or in your sleep.

No go. He was trying to turn me into a major psychiatric case...based on what...all the time he spent with me? None of my Docs have gone that direction. I am depressed, God knows, so that's why I see a psychiatrist and a therapist. I took enough to get him to order my meds; doubt he spent much time reading my records.

My instincts are quite good, overall. I bet if I asked him what PSP was he'd just stare back at me. I didn't because I couldn't afford anymore angst. I very much believe from my nurses' behavior she was intimidated by the Doc and in general a shrinking-violet, and long before the Doc hit my room over 8 hours after I was admitted while he was attending to

the 'patients that really were sick', he was more than annoyed with me.

When it became clear nothing was going to happen the rest of the night but to be periodically checked on "to make sure you're still alive", I told him it was a waste of time and I wanted to be discharged.

OMG. His word - okay - wasn't entirely out of his mouth before he was out the door. I knew if I stayed I'd lay there and stew and lose more sleep I couldn't afford.

Mostly, NO PATIENT should ever be treated like that. Generally I've have excellent to good care over the last number of years, but I know shoddy care, or in this case, no care when I experience it.

My daughter came to get me about 12:30 a.m. He wrote on my chart I was discharged against medical advice but in capital letters, circled at that, he wrote "MOOD INSTABILITY". I thought that goes both ways, Doc. Yea, I was unstable. I had to fight, and I mean fight for my meds, there was NO plan, and the doctor who was to be observing me didn't show up til over 8 hours later and was turning all that's wrong with me into a major psychiatric disorder.

So, Friday, the 24th, I called the hospital and filed a formal grievance against this doctor. She sounded abit horrified when she heard what happened. She said under no circumstance should a doctor first see their patient who's admitted for observation under their care 8 hours after hitting the floor. That was for starters. The process sounded quite professional and he'll now be in a tracking system for complaints against him. There will also be a formal investigation which will be handled by the Medical Director. Having been around the block several times, I asked her if by investigation, if that meant they will circle their wagons around him and protect their own. I was assured not and I would receive a follow-up letter when it was done.

Look. I'm of age. I've had several health problems of my own from a young person to the present. Both of my girls have had serious health problems from birth forward in which I've been their advocate and medical agent, so-to-speak. I've let a LOT of things go over the years that I thought weren't right, overtly wrong, or unnecessary. I've also fought like heck on their behalf or my own when need be.

But this was one of those times, for as sick or whatever I was when I entered that hospital on the 23rd I had to advocate for myself. The ER was great, excellent actually. But when I was moved to the floor, and absolutely nothing happened for hours at a time, I felt dumped, diminished, invalidated, and neglected. I refuse to let that happen to me or anyone else. Then to have the DOC come in full of attitude, no way. Not acceptable.

Also on the 24th, I called my Neuro's office to schedule a follow up appointment. I got voicemail and briefly described what happened at the hospital & needed an appointment. His assistant called back shortly after. She said she forwarded my voicemail to both my Doc and his nurse, and my Doc was concerned/upset enough that he order all the reports/notes from my stay there.

We'll see what comes of all of this. What I do know is I will not be persuaded that the treatment I received at the hospital was protocol and to be expected.

What I do want to get back to is what the heck has been going on with me in my sleep? Am I really brushing up against death but hanging on to life as hard as I can?

I do know with sleep apnea there are 2 kinds, obstructive and central nervous system. Well, I have enough extra junk in my mouth that can go if it's interfering with my airway; still have tonsils and adenoids. Plus, I found out a couple of years ago by accident, and confirmed by MRI I have a deviated septum which is why I think I had such a hard time breathing in that mask. It's on the right side. My ENT guy said it didn't look to serious and if started causing problems, he's gladly fix it. I could see it clearly on the MRI..The narrowing is abrupt and high up w/o any trauma around it. Have a hunch I may be having some surgery in my foreseeable future, but I'll do anything to get more oxygen to where it's supposed to get going.

Central Nervous system apnea is a lot trickier, so I won't go there. Hope it's not a combo of both.

Wouldn't it just be something, in a very positive way, if I can get my nose widened and unnecessary parts that might be obstructing my airway out of there so I'm more oxygenated? Wow!!!!! It might not make my PSP go away, but can't help but think if I'm getting more oxygen where it's supposed to be, even during the day, might it help reduce all these fainting events I've posted so often about, or is it wishful thinking? And, if I'm more oxygenated during my sleep, I will sleep more restfully and have more energy instead of this chronic exhaustion in which some days putting one foot in front of the other is work?

Finally, on a happy note, when I was picked-up from the hospital early in the morning on the 24th, I slept peacefully until 1:30 p.m. No action-packed dreams in which I feel symptoms. Last night I fell a sleep before 10:00 p.m. and slept til 1:30 p.m. again, peacefully. I actually feel rested for the first time since I can remember.

Thoughts and feedback please; I know this is a long blog, but I feel like I'm sitting on the edge of some kind of breakthrough or the other.

Fondly,

Judy

[SharonAB]

Dear Judy,

Everyone needs sleep. So do whatever is reasonable to get it.

With every doctor’s appointment that I attended with John somewhere in conversation, it always came up. Sleep gives us ALL the rationale to think.

I have a girlfriend and her daughter now sharing the home with us (since John resides elsewhere)- and it is a standard rolling joke - all now know my line "Is the house on fire, are you dying? If not. Do not WAKE ME -- I NEED my sleep!

John's sleeping pattern is poor, became that way with PSP - no other way to describe it. Therefore, he had a sleep apnoea test a few years ago. Stayed overnight in hospital. Did not pickup anything at the time - that night he slept too soundly which was totally against the norm! Nevertheless, because he had PSP the doctor at the hospital informed that he should be getting equipment to assist breathing - even if rarely used in the beginning and we would be eligible for a substantial grant. The Singaporean doctor was very familiar with PSP, CBD, MSA etc. In addition, she strongly supported breathing apparatus in the home for John. I followed up this with John's neurologist and psychiatrist. Both also wanted it for John - felt it was something John should be trying along with the music, lighting changes already in place. However, unfortunately, he would not have a bar of anything being near his face or nose- being stubborn or fearful or both - not sure. John is now starting to say how he wishes he had it alongside to try at night. Therefore, I have suggested to him to follow up with his doctors again etc. Maybe this is something to consider instead of a dreaded operation.

The worst thing about reading what you are going through is that it may not be last. I am a strong supporter of obtaining and retaining services for my husband who has PSP. I am up to any challenge and in good physical and mental health, reasonably articulate and present myself well in a public arena - can address a large audience comfortably etc. (Well like to think so!) Nevertheless, I had to get an advocate to support me to be heard! It appeared the only way to maintain my strength and get some of the services that my husband required.

For me - it was Carol who is a registered nurse, has an adult son with a rare disease, and one who is prepared to fight a battle. Whenever I was having difficulties regarding medication, care of injuries, medical equipment funding, care in the home and hospital and respite and found I was getting nowhere I'd arrange a formal meeting, around a table with those in charge - CEO, financial manager, floor manager, regional coordinator etc. It was then that Carol sat alongside. She was introduced as an advocate to support me and the best interests of our family. She did not need to say much but it seemed that purely with her presence (and knowledge to all parties that there was a third party involved - and by the way Carol's medical knowledge was not divulged) that I was able to get the ball rolling.

To get an advocate on board for me took a bit of left field thinking. I felt I was going round in circles til I put on my 'working hat'. When I revisited the organisations I had already contacted they were then prepared to place a note in their newsletters, send out emails and make me an agenda item at their next meeting. Anyway, one thing leads to another and then I received a call, held a meeting with Carol and our time together begun. So maybe this is something for you to consider, if you have not already.

I imagine you may not have though. Well at least until recently because you have probably until now been the one there and doing things for your children. You come across as a pretty strong willed person like me and think you can do all - most times because you can't find another option. However, things as you are finding out quickly grow and can become too much, (Which with PSP they quickly do!).

So perhaps my rant is something to take on board and to add to your vast collection when you next speak to your neurologist.

In the interim, rest well!

Regards,

Alana - Western Australia

[JudyJ in reply to SharonAB]

Alana:

Oh, I do need an advocate. I'm pretty much it. My best friend, Connie, who has my POA and is my health directive agent, lives out of state about 260 miles away so it's impractical for her to get up here, unless it's via the phone. But Connie has been my best friend for 30 years, is my touchstone, is grounded, and knows me inside/out, as well as my intentions going forward. Unfortunately, I don't have as close of a friend locally. And, my immediate family is fractured & those I'm in touch with are remaining in selective denial and refuse to embrace what PSP is. Most of all, I gave up just recently trying to get them on board; it was too exhausting to keep repeating myself like it was new info every time I brought it up. And, they strongly prefer only cheerful information which was, uh, almost impossible to come up with sometimes along the way. I ended up feeling humiliated. If there was ever a time they need to operate on my terms, not theirs, it's now. I'm in the poorest position to be my own advocate (should I get sicker), tho I'm holding my own for now; some days are better than others.

I'm 54 and the Mother of two 21-year-olds who still look for guidance and leadership from me, especially my oldest who has special needs. I've been her advocate from the beginning. Dad was disinterested (being polite) and didn't get much help from family members either. She still needs my advocacy.

Having gone down the road of county social services before with Katy, and myself to a brief extent, IF you qualify for social services, and it's a huge IF, since the funding for those programs have been slashed to nothing and contrary to the IDEA (Individuals With Disabilities Act), it's surprised me more than a few times over the years that the strength of the Federal Laws mandating programs for the disabled are as worthless as the paper it's written on by the time it gets to the County levels. Every County has some flexibility to do what they want with their funding and can restrict qualifications to the point of ridiculous to turn people away, therefore spending less money. Going thru that with my daughter now. It's a huge complicated tedious energy-sucking mess. She did and always had services since pre-school. If you do qualify in this County, or the one we move from, the agenda is to get you on a program called Medicaid which is state-run but a companion to Medicare which both my daughter and I have been on for a long while.

The gist/push to getting you on Medicaid is to open a plethora of services you would otherwise be unable to receive, providing you qualify within the narrow edicts of getting County services. Oh, yes, all kinds of things become available like in home care, help with shopping, transportation, job finding given a person's skill set, etc. There are even more helpful services than I mentioned.

BUT...the catch...there's always a catch...to get on Medicaid, you have to declare yourself asset-free; believe that's completely but don't quote me; believe you can only have $2K to your name and the rest goes back to Medicaid to cover all of the costs they will be spending on you going forward.

Right now, I have Medicare & a good Medicare replacement policy which costs between the 2 about $350 a month. Even with prescription care, tho, my out-of-pocket expenses are over $200 a month. Tough on a fixed income. But I have to have them.

Katy has excellent insurance. She too has Medicare but is covered under her father's Blue Cross Blue Shield policy til she's 26 (possibly 27).

So the dilemma is throw all of this good insurance away to go financially destitute to get what we need in terms of services. I believe I need to go back to the insurance carriers and see what we are eligible for under their policies. I know for instance, under my insurance, I'm not eligible for in home therapies of any type. Now that I'm not driving, it's just harder to arrange getting to these places when I need to.

So what has this become. An "All or Nothing" situation? Have I mentioned yet "I'M ALL FOR UNIVERSAL HEALTH CARE.", tho I know it's not a perfect system either, but it's better than this all-for-profit medical care system we have here, including the uber-rich pharmaceutical companies that are the strongest lobbyist in Washington D.C. Not just myself, but a growing mass of people, are of the belief that these uber-rich pharmaceutical companies are less about finding cures for diseases because it's not as profitable as 'treating' the diseases with their oh so many medications. It wouldn't surprise me in the least if cures haven't already been found but were erased, so-to-speak, because of how powerful these drug manufactures are. Paranoid? Not in the least. I've watched this evolve over the decades.

I do, I do, I do, need an Advocate, especially for the PSP. Seems like a daunting task to find one because of it's rarity. I at least need a medical advocate outside of my Docs who can step in and help when need be. I'm so accustomed to being the strong Advocate, I will go to the mat for you advocate, with my daughters. Now I need one, badly.

Thanks for listening to all of this; need to get it out.

Fondly,

Judy

[Hidden]

Judy, hang in there, you are doing a brilliant job. Well done for complaining-this behaviour towards pwPSP has to stop.It stems from ignorance of the condition. I had similar issues with mum's GP-her own man was lovely but as soon as we needed to speak to ANYONE else in the building they had not a clue. SO I sent a load of paperwork to the practice manager and insisted she made the staff read it. It was too late for mum as she passed on a week later but it might help the next person. I had to do the same for the continuing care people before we got anywhere. I think it is up to your neuro to educate those who will come into contact with you. Can you put that to him? Can you send a copy of your experience to him? I definitely would if I were in your shoes..Do you have a Parkinson's nurse? See if she can be with you at appointments and admissions. Take care Judy, I am thinking of you.

Dianne xx

[JudyJ in reply to Hidden]

Dianne:

All excellent ideas, and I'm sorry to hear it was to late for your mum, but you're right, anything you do pro-actively will help someone down the line.

The irony-actually a maddening irony- is the ER Doc who saw me that afternoon was hyper-familiar with PSP because his Mother had just passed away from it. My male nurse told me it was my lucky day because he was on his way in and I wouldn't have to waste my energy educating him. In fact, my nurse, was very verbal/educated about PSP from the working relationship he had with the ER Doc and going thru the experience with him, regarding his Mother. I really did feel lucky.

The ER Doc told me he talked by phone with my Neuro who is on staff there as to what kind of tests/monitoring should be conducted overnight. He also told me he "talked to the Doc upstairs" - the one who showed up after midnight after I layed there for 8 hours twisting in the wind only to get hit with his pissy attitude, pardon the expression, about what was to be done for me.

I don't think the cause of what happened on the floor was a complete break-down in communication; the ER Doc was nothing but knowledgeable, kind, informative, and communicative as well as with my personal Doc and the "Doc upstairs".

I believe in every profession most are in it because they love it and are committed to it, and then there's the small percentage who need to find a different line of work. I do believe I got the rogue doctor. I swear he didn't come physically closer to me than 10 feet, was in the room for roughly 5 minutes before I told him I wanted to be discharged because it seemed he just wanted to engage me as an adversary.

You can't know how BADLY I wanted to ask him if he knew what PSP is (he was a young one) but didn't. I didn't because I was very afraid if he said no, or tried to bluff his way thru an explanation, I would surely lose it as I was so scared & agitated, and he would've made his point I was a psychiatric case and there was NO way I was going to allow that to happen. Of course I was anxious, no doubt. Admitted I am depressed and have been for a number of years, but that's not what brought me to the ER that day.

What better way to intimidate and shut-up a 'nuisance' patient than pull out the 'you have a major psychiatric problem'. I was a nuisance because he had to know on some level that as his patient for the duration of my stay, not to see me for the 1st time until 8 hours after I hit the floor was wrong, at best neglect. To have to crank up my volume and pester my nurse around 10 pm to get my meds which were overdue and adding to my instability is inexcusable. It was clear she was intimidated by this Doc and was reduced to tears in front of me because he wasn't responding to her pages and she couldn't give them to me because he hadn't seen me to approve them.

What a nightmare. Truly. It was an unnecessary scene and to my detriment. And I should not have to be comforting a distraught nurse over a doctor's bad behavior, bordering on malpractice, but for sure neglect.

I have always been a sickly person since a child to the present. My girls were born with a life-threatening genetic disorder and were horribly sick during those early years tho they are more stable now. Factor in my own problems during the 2,000's. I learned to find my voice, mostly by learning how to become a good advocate for my girls.

I've had mostly good care, and some not so good care, a bit of shoddy care, but this was a situation of no care. I've learned when to let things go in other words pick my battles, but this hospitalization??? And the extra rub is I had so much confidence going onto the floor because I was lucky and had the most excellent care from an ER Doc and Nurse who were not only familiar with PSP, but intimately familiar, which brings it to an even higher level.

Then...just dumped in a room with the curtains closed, door shut for hours. Did hit the call light for help to the bathroom and would ask the attendant what the plan was, where was my doc, etc. Always replied with "I'll check with your nurse." who never showed until she dissolved into a puddle of tears around 10:00 as I was pushing for my evening/night meds. Obviously this DOC has been a problem for her before and I had affirmation about that from other nurses on the floor as I was signing out.

NO MORE. Can you tell I'm still angry about this? Sure am. Look, I'm not out to save the world; I am not deluded. But when an opportunity falls in my lap that screams "FIX THIS" I will do what's in my power to do so. And not just for me, but for anybody else who runs into this Doc and his ginormous attitude; don't care if it's PSP (well obviously I do care), but whether it's a gall-bladder gone bad, diabetes, or whatever, NO patient should have to endure the kind of treatment I received from that doctor.

I spent about 30 minutes on Friday on the phone with the appropriate person at the hospital filing a formal grievance against this Doctor. I have to have faith (tho I'm not 100 percent confident based on past experience), there will be a thorough investigation which will be overseen by the Medical Director. I will get a report in 30 days. As sick as I was when I went into that hospital, tho my tremors calmed with meds in the ER, they were still there. To ignore me for over 8 hour was plain dangerous. That Doctor got lucky.

I know my Neuro wasn't happy about what happened and ordered all of my records from that hospitalization. As I said, I'll see him on Thursday. My experience with him is he won't be happy.

I can hear the hospital Doc's excuses now...'it was a busy day and she wasn't sick...'. Oh yea? I acknowledge there were sicker people than me that night but perhaps he shouldn't have come in late as my Nurse told me with a certain amount of frustration early on in the evening. We all have bad days, but I think due to the nature of the high ethics and standards of a Doctor, he can't pull that one out of his hat and expect it to be plausible. I hope he gets sent to some Patient 101 Care Classes, The Importance of Being On Time Classes, Developing A Good Bed Side Manner Classes, but most importantly, an intensive class on PSP and all it entails.

Okay, think I'm done now. This is cathartic. It was such an upsetting, nightmarish situation that was completely preventable. He put me at further risk and needs to be held accountable, and by more than a slap on the hand with a couple of papers signed.

Stay tuned. Thanks for your support.

Love,

Judy

[Hidden]

I also had huge issues when mum was admitted to hospital with a vomiting bug. To say she nearly died is no exaggeration. For 2 days she was unconscious then bless her my lovely mum sat up on the third day and ate breakfast as if nothing had happened! However I then spent 3 weeks trudging in and out of the hospital making sure they fed her appropriate food and drinks for her needs, The most worrying thing was the lack of understanding of her meds needing to be on time each day and the right dose(basic stuff you would have thought). But day after day with new staff and things that cropped up all this was shockingly loose! They said they would keep mum in to mobilise her and then didn't even get her out of bed as she was 'too wobbly'. No amount of explaining would have them believe that mum was always wobbly but could still walk! After returning to the care of the Nursing home mum got on by her own sheer will power and at the end of the month was walking with help and all was well again. I take my hat off to pwPSP you are the strongest bravest and most determined people.

Dianne xx

[JudyJ]

It is just the most frustrating, mind-blowing, irritating, desperate feeling, isn't it? To top it off, repeated several times over during a stay. It's been my experience, the medical professionals, no matter what level, who ignore me, talk over me, do against what I tell them works or is normal such as 'wobbly' (I too am wobbly) are the ones who know nothing about PSP. Shame on them for letting their ego and ignorance get in the way. Someone will be seriously hurt or die because of it, and one life is too many.

Judy

[jimandsharynp]

Judy, remember surgery on nose requires anathesia which can effect PSP patients adversely. I wouldn't do it. Just my opinion.

Jimbo

[JudyJ]

I'm seeing my Doc tomorrow to get the results of the sleep study as well as other matters.

I do remember what you said about anesthesia and do not take your advice/concern lightly, and plan on having a detailed discussion about this.

However, I am wondering if the pro may be above the con in this instance. It was clear from the sleep study and what little the nurse did say, I have it; to what degree I don't know. If it is toward severe in nature it may be worth the risk.

As I've mentioned in a previous blog, I found out by happenstance that might right nostril is quite narrow at the top of the airway. I can feel the restriction by simply placing my hand over my left nostril blocking the airflow; I get little in via the obstructed right side. MY ENT Doc said because there was no other sign of trauma around the deviated septum, he believes I was born with it.

Also because I still have my tonsils and adenoids, and as I understand it, sometimes there can be additional extra soft tissue in the palate area that is unnecessary, all of this plus the deviated septum can be contributing to the apnea.

I admit I'm a little desperate to be feeling better and having more energy. I've dragged myself around chronically tired and with poor sleep patterns as far back as I can remember. Another surgery is the last thing I want, but it may be what I need. It may not affect the PSP, but it may positively affect the quality of my life if I'm getting proper oxygen both awake and a sleep.

I'm a tall-ish but petite person. All my life I've been told I have small veins/arteries when needle insertion has been necessary, a small mouth when dental work or intubation has been necessary. I have small ear canals which backs wax up and have to have my ear canals professionally cleaned out 2-3 times a year or I experience profound conductive hearing loss. I have small hands and feet. I'm just proportionally small, inside and out.

So my thinking is and only if the doctor agrees and the apnea is toward the serious to dangerous end of things, I can't help but think removing unnecessary tissue and widening my nasal airway might do me a world of good.

I will proceed with caution and certainly take your advice in the spirit you intend it; it's reassuring to know someone's watching my back. My biggest thing now is Hope. I need Hope, To have even a possibility I might be able to have more energy because blockages are removed is exciting to me in a way there are no adequate words. I also don't need blockages remaining in place that will make my cognition worse with my PSP, as I understand it will anyway. At least I'd have a jump on it.

I have a left hip that was due to be replaced last summer, and a right knee cap to be replaced this year (born mal-aligned). I decided over the last year there is no way my body can endure that kind of invasive surgery, anesthesia, and recovery. I wilI just have to live with the discomfort. I think it was just short of a miracle I was able to pull thru my right hip surgery last April, pre-PSP diagnosis, followed by an emergency gallbladder removal a few weeks later. I had never felt so sick and the recovery was tediously slow; almost unbearable.

So be assured, I will only go forward with surgery to correct these airway obstructions if it is of a severe enough situation and with much discussion about the effects of anesthesia with my Doc. I'm only 54. A girl has to have hope even if I have a disease that I know carries a poor outcome.

Judy

I'll let you know what I find out.

[JudyJ]

Oh...and I can't help but wonder if removing unnecessary tissue and widening my nasal passage to increase oxygenation would help reduce the number and severity of these fainting episodes I've been having since age 3. I may be way ahead of myself, but that's where HOPE comes in. My fainting episodes have been so debilitating just by itself.

I will either come away from my Doctor's appointment tomorrow disappointed or with the possibility of feeling a whole lot better on a few levels via an uncomplicated surgery but for the risk of anesthesia. If my apnea leans to the dangerous side, what's worse? Having a stroke or heart attack in my sleep because my BP drops too low, which is exactly what feels like has been happening, given how sick I am upon awakening.

Or, if I have a fainting event in which I go all the way out and my BP drops so low it stops my heart which was already proven can happen via the tilt table test I had during 1998. If it drops to low if I faint, that can also cause a stroke. People aren't always around me during the day, and it comes on so suddenly of late it scares me. If I remember correctly, it takes only 3 minutes or so of not getting blood/oxygen to your brain before brain death occurs. Once when I fainted, a well intentioned person held me up from my arm pits to prevent me from falling, and my BP dropped so low, I had a grand mal seizure. Those are dangerous in themselves and can cause brain damage if not brought under control in a timely manner; that episode landed me in the hospital for a few days, sicker than sick.

So, I'm absolutely between a rock and a hard place on a few levels, and PSP aside, have been dealing with them all my life, perhaps even the apnea if the deviated septum is a birth defect. Never have been a good sleeper.

So if I have to chose between the calculated risks of anesthesia which I've had several times before, or going to sleep every night not sure if I'm going to wake up the next morning, or experiencing the beginnings of my fainting events while up and around a minimum of 3-4 times a week which is especially frightening if a lone, the risk of anesthesia seems like the lesser of the evils unless my Doc tells me otherwise.

I apologize for beating this to death, pardon the pun, but I have this gut feeling, not without substantiation, that I'm standing on a precipice and time/correction if possible is of the essence. I want to live. I do not want to die. I have purpose that's unfulfilled. And I certainly don't want to be more impaired than I am already because appropriate and timely action wasn't taken.

Bottom line, this is the most scared I've been since I was diagnosed and am fighting to stay as rationale as I can and not let fear sweep me away.

My appointments in the morning; I will get concrete answers; wish me luck.

Judy

[JoJo-K]

Dear Judy,

Oh my days, I've been horrified to read your last 2 blogs, I can't imagine how frightening this must have been for you. To have to discharge yourself from hospital after what I can only describe your experience as being victimised !!! Please let us know how you got on with the sleep study reports. Thinking of you my lovely.

Sending warm hugs and lots of love

Jo xxx

[JudyJ in reply to JoJo-K]

Yes, it was a very disturbing event, for sure. I saw my Neuro yesterday for a follow-up to get my sleep study results - I will write a blog about it today - and we discussed what did and didn't happen during that hospitalization.

He was appalled at that Doctor to say the least. He said when the E.R. Doc called him (the Doc who's Mother died of PSP, so he was very informed), he wanted me monitored in more than one way.

He is suspicious that when my tremors become as severe as they did that day, they may be seizures. When they were the most violent, I only felt semi-conscious.

So it was a very wasted diagnostic opportunity as well as plain neglect. He was glad I filed a formal grievance. Hopefully, the hospital/Medical Director will take this seriously as I was assured they would, and that Doctor's ego will be brought down a few notches and be forced to take patient sensitivity classes at the least as well as other sanctions. Nobody should be treated that way. Actually I wasn't treated at all; simply put in a room and ignored for over 8 hours. Hideous. And dangerous.

Thanks JoJo, for your continued support, love, and kindness.

Judy

[JudyJ]

To follow-up, I received a letter from the hospital about my experiences in their facility.

It was straight-forward; the doctor was wrong on all counts and has been 're-educated' as well as other actions they didn't share with me. That's as good as it's going to get; I'm satisfied.

The letter also stated they were going to use my experience as an 'educational tool for other physicians" regarding improved communication with patients, appropriate response times, etc.

Judy