Pegasos with physical + mental dx

[zevon]

I have begun my application with Pegasos. Just received a nice email confirming my membership and that they will be sending me something in the post soon.

I was impressed the person who replied to welcome me to Pegasos seemed to recall exchanging emails with me several months ago despite putting my membership under a different email address.

I'm in my late mid 30s and do happen to live somewhere that has legal VAD but I do not qualify as I'm not terminal and won't die in the next few months from any of my conditions. I have several complex physical, neurological and mental health diagnoses. However, I have been beginning to show possible symptoms of early onset dementia and am being referred for further neuro-psychiatric testing by both of my neurologists and psychiatrist. Since this runs in my family time is now of the essence!

As one might tell from reading this I do have a great sense of wanting to share what is happening with this process and I'm obviously hoping they approve my application. I may have difficulty with this so if anyone has any specific questions please do or reply in this thread and I will do my best to keep up with it. Please have patience with timing of my replies as I am clearly struggling like so many of us are.

My feeling based on our communications thus far is that I am a viable candidate for their VAD despite having some mental health dx: treatment resistant depression for which I've been trying to treat my entire life and ended up doing ECT. Boy, do I regret that. Didn't help one bit. Anxiety panic disorder, agoraphobia, adhd and complex/chronic PTSD with a little complex grief thrown in for good measure.

Where to even begin with the physical issues, and the fact that even my doctors recognize that my mental health sucks due to the novelty of some of my conditions? Thankfully that has been noted many times in my medical records over the years.

Of course nothing I have will kill me now nor are there "cures" for anything. I'm in so much debt after fighting for SSDI. I haven't been able to work and I rose up into a position of leadership in which I tried to model compassion for all people. That's not a welcome mentality to have when your boss things it's your job to fire their employees on a Sunday, but I digress. This probably sounds selfish or greedy but I'm glad I finally got my SSDI and back pay so I can now afford the deposit and final payment as soon as I send over my medical records.

I'm not entirely sure how many records they need and what kind -- awaiting a response to that question. They are quick to reply so hopefully I'll have more information soon.

Ideally, I would not have to die in another country and essentially be forced to be cremated. I read an article about the US state of Washington approving human composting farms which would be so interesting to utilize. Plant my favorite tree or plant and help its growth process with compost made of my hurts and pains. Allow me to rise again, anew, again, you see.

Is there anyone else currently considering Pegasos or has an approved application? Once approved do they want you to get it done asap or is there a little wiggle room time wise? I know they ask for a preferred month and will work with me on figuring out a specific date. I would love to see another autumn but don't want to leave my husband behind during the darkest and most depressing time of year.

I've discussed this at length with him. He understandably hates that this is even something we have to consider, but he supports me 100%, which may sound strange to some of you and, if so, please refrain from expressing your negative opinons. I know life isn't fair, but forcing someone to continue living in agony is even more unfair.

I'm losing track of where I'm going with this so thanks for reading if you made it this far.

TL;DR Pegasos member and VAD applicant with possible early onset dementia (runs in my family) rambles and loses track of what else to say.

I wish the world wasn't so cruel.
Well, it's not the world.
The earth itself is a wonderful place when you really sit back and think about it, the environment, biological processes....I'm so sad I won't get to see the world as I'd wanted to.

Thanks again for reading.

TL;DR

 

[mini_weeny]

Hi, I'm very interested in following the process with Pegasus, I inquired if they would take my case and said yes but haven't done anything else yet. I have scleroderma, possibly MS but can't get a positive diagnosis until I get an MRI which I can't get because I caused myself Hyperacusis after a gun went off and destroyed my ears. Hyperacusis is my main reason for wanting to go to Pegasus. I hope you can keep us updated please!
What is the second step after they say they can take my case via Email, become a member?

 

[zevon]

Hi, I'm very interested in following the process with Pegasus, I inquired if they would take my case and said yes but haven't done anything else yet. I have scleroderma, possibly MS but can't get a positive diagnosis until I get an MRI which I can't get because I caused myself Hyperacusis after a gun went off and destroyed my ears. Hyperacusis is my main reason for wanting to go to Pegasus. I hope you can keep us updated please!
What is the second step after they say they can take my case via Email, become a member?

Hi mini_weeny (dachshund fan by chance? I grew up with them )

First, I'm so sorry to hear about your scleroderma dx. I know the actor Bob Saget does a lot of work for the scleroderma foundation because his sister passed away from it.

I have had awful tinnitus since I can remember and also have hyperacusis. It's the pits, isn't it. One of my favorite bands, Einstürzende Neubauten has a song called, "Silence is Sexy." Indeed.

To answer your question:

I created an account on their site, paid the €100 membership fee and waited for a confirmation email with a link to sign into a private area for members only where you will find several sections of information to fill out. Some of the questions are presumably pre-screening questions to guage where you're at and if they can rule you in or rule you out as a candidate. Some just sound like "getting to know you" questions, which I appreciate. They want to treat you with dignity and respect and know a bit about you.

I seem to have been "ruled in" thus far. I need to get a copy of my medical records and forward them on. At that point it sounds like they need to make a determination if my physical ailments outweigh my mental health issues.

It sounds like you have an acceptable case with scleroderma on its own. But that's just my opinion since I am aware of how it effects you.

It doesn't sound like there is any one right or wrong way to go about it but you do need to pay the €100 fee to become a member and get access to the private area to complete your VAD application, so that is where is recommend you start.

I hope this info helps.

 

[mini_weeny]

Are you from Germany by any chance??? I Studied languages and I was about to start German when my h started so had to quit. I think yes scleroderma and possible MS would probably suffice my only fear if accepted and if I can complete the process is how can I make the flight with H? but at the same time I have no choice since H is just unlivable and having no family makes it even more impossible.

Thanks for your answer it's really helpful, I'll try to get an all clear to fly from my ENT first and if I get it then will try to proceed with the application with them but I feel it so impossible to happen, still I must at least try because cbt by other methods is just impossible!

 

[zevon]

Are you from Germany by any chance??? I Studied languages and I was about to start German when my h started so had to quit. I think yes scleroderma and possible MS would probably suffice my only fear if accepted and if I can complete the process is how can I make the flight with H? but at the same time I have no choice since H is just unlivable and having no family makes it even more impossible.

Thanks for your answer it's really helpful, I'll try to get an all clear to fly from my ENT first and if I get it then will try to proceed with the application with them but I feel it so impossible to happen, still I must at least try because cbt by other methods is just impossible!

Hallo, Ich bin Ausländer und Ich spreche eine wenig Deutsch. Dein Englisch ist viel besser als mein Deutsch :)

I actually live very close to an airport and it is hell. I don't think my case is as bad as yours but I can certainly sympathize and empathize. If you can tolerate ear plugs I would highly recommend wearing them. It can be a challenge if you also have tinnitus. Then wear over the ear noise protection (headphone/"ear muff" style) in addition to the ear plugs. Your ENT may be able to recommend ear plugs you can buy online or otherwise recommend a place that will make custom ear plugs for you. I have tried so many different kinds! You can also find DIY molding kits to try and make your own at home.

I apologize for so many days passing since my last message. I am still waiting for a reply from Pegasos regarding a few questions I had about some documents I need to send them.

If you are in Germany, would it be possible to take a train or drive, or have someone drive you? I've taken the train we have here and, while it is slow, it is much quieter. Pegasos is already so much money, at least for me. I'm making the journey as easy as possible and I still have to save for two first class tickets by air and one return ticket for my companion. I need to fly first class for the space and ability to lie flat due to my other conditions.

If you have the funds, or the ability to save for them, would renting a private cabin on a train be a possibility for you?

I'm far from bougie, quite the opposite in fact. Planning for Pegasos feels a bit like planning a luxury vacation. Sometimes I wonder if that is intentional on their part, making it so expensive when you take travel and lodging costs into consideration for not only yourself but whoever may be accompanying you.

Is your ENT willing to prescribe you a medication to help calm or sedate you during your travel journey? In lieu of prescription sedatives I have used something called Phenibut before which you can order online. Perhaps that is something to look into.

Oh, mini_weeny, I wish I could be of more help to you. My father and I suffered together through hyperacusis, tinnitus and he was finally diagnosed with Ménière's Disease. He passed away a few years ago in my arms and is finally free from all of his suffering I using these curses you and I continue to suffer from. He also had AML (leukemia), fronto-temporal dementia and his brain finally gave out after countless strokes. We both have other issues but this feels like enough to share for now.

It doesn't look like I'm able to send private messages yet but once I'm able to I will send you one or you can try sending me one first. I was on here under a different name a few years ago and know I have to post a few more replies before I get my messaging privileges. In the meantime, I'm thinking of you and your aching spirit, even though I don't know who you are. If that makes any sense!

I wouldn't wish hyperacusis on my worst enemy. Do you also have an extremely sense of smell and taste?
I live near an airport and I can smell the jet fuel constantly. I can hear the planes taxiing the runway, I can hear them idling, I can hear when they are getting situated at the gate. People think I'm crazy and don't believe me. They don't think sound can hurt your entire body unless you're involved in an explosion or don't wear ear protection at a loud concerr. I would imagine you've been treated similarly and have found little support in your suffering. I know it likely doesn't help to know that an internet feels your pain.

I've been told I give very good, warm, comforting hugs. If you like hugs, let's pretend that I can actually give you one. I'm so sorry I can't do more.

I'll keep you updated on the rest. Thanks again for your patience, my friend. Hope you don't mind if I refer to you as a friend.

 

[mini_weeny]

Hallo, Ich bin Ausländer und Ich spreche eine wenig Deutsch. Dein Englisch ist viel besser als mein Deutsch :)

I actually live very close to an airport and it is hell. I don't think my case is as bad as yours but I can certainly sympathize and empathize. If you can tolerate ear plugs I would highly recommend wearing them. It can be a challenge if you also have tinnitus. Then wear over the ear noise protection (headphone/"ear muff" style) in addition to the ear plugs. Your ENT may be able to recommend ear plugs you can buy online or otherwise recommend a place that will make custom ear plugs for you. I have tried so many different kinds! You can also find DIY molding kits to try and make your own at home.

I apologize for so many days passing since my last message. I am still waiting for a reply from Pegasos regarding a few questions I had about some documents I need to send them.

If you are in Germany, would it be possible to take a train or drive, or have someone drive you? I've taken the train we have here and, while it is slow, it is much quieter. Pegasos is already so much money, at least for me. I'm making the journey as easy as possible and I still have to save for two first class tickets by air and one return ticket for my companion. I need to fly first class for the space and ability to lie flat due to my other conditions.

If you have the funds, or the ability to save for them, would renting a private cabin on a train be a possibility for you?

I'm far from bougie, quite the opposite in fact. Planning for Pegasos feels a bit like planning a luxury vacation. Sometimes I wonder if that is intentional on their part, making it so expensive when you take travel and lodging costs into consideration for not only yourself but whoever may be accompanying you.

Is your ENT willing to prescribe you a medication to help calm or sedate you during your travel journey? In lieu of prescription sedatives I have used something called Phenibut before which you can order online. Perhaps that is something to look into.

Oh, mini_weeny, I wish I could be of more help to you. My father and I suffered together through hyperacusis, tinnitus and he was finally diagnosed with Ménière's Disease. He passed away a few years ago in my arms and is finally free from all of his suffering I using these curses you and I continue to suffer from. He also had AML (leukemia), fronto-temporal dementia and his brain finally gave out after countless strokes. We both have other issues but this feels like enough to share for now.

It doesn't look like I'm able to send private messages yet but once I'm able to I will send you one or you can try sending me one first. I was on here under a different name a few years ago and know I have to post a few more replies before I get my messaging privileges. In the meantime, I'm thinking of you and your aching spirit, even though I don't know who you are. If that makes any sense!

I wouldn't wish hyperacusis on my worst enemy. Do you also have an extremely sense of smell and taste?
I live near an airport and I can smell the jet fuel constantly. I can hear the planes taxiing the runway, I can hear them idling, I can hear when they are getting situated at the gate. People think I'm crazy and don't believe me. They don't think sound can hurt your entire body unless you're involved in an explosion or don't wear ear protection at a loud concerr. I would imagine you've been treated similarly and have found little support in your suffering. I know it likely doesn't help to know that an internet feels your pain.

I've been told I give very good, warm, comforting hugs. If you like hugs, let's pretend that I can actually give you one. I'm so sorry I can't do more.

I'll keep you updated on the rest. Thanks again for your patience, my friend. Hope you don't mind if I refer to you as a friend.

Hiii, you are so kind for answering me :) living near an airport seems like hell indeed, yes my H is severe I have been mostly homebound the last year since it all started and it has gotten steadily worse so my tolerance to sound is decreasing. This scares me a lot and makes me wonder if I can actually make the trip to Pegasus, I don't know if my ears can take the many noises of the journey and I live in America so it's a 12 hour flight. Seems so impossible . What also scares me is getting barotrauma or something awful from the pressure changes, I have a semicircular Chanel deshicience in one of my ears so who knows how air pressure changes can affect me.
yes i tried earplugs in the beginning but now can't tolerate them, they hurt my ears so I use headphones and muffs when necessary, still I just can't manage life with this condition it's just impossible so it is my main reason to wanting to go to Pegasus.

I'm so sorry to hear you have been going through so much pain it's really unfair how some people have long healthy lives and some of us have a bunch of disorders that won't let us enjoy life. I wish assisted dying was available everywhere and was not as expensive as it is now, dying well is a basic human right that we should all have access to.
I'd be honored to be your friend and you seem to be such a warm kind soul, I would love to know about your progress and we can chat more if you like. A good friend is always appreciated. And I send you back a warm hug!!

 

[pen]

Don't mention Mental disease there, they don't accept this as a valid reason, you'll lost your dough.

 

[Pookie]

I'm so sorry you're suffering like this. I've contacted Pegasos and they seem lovely. I emailed and asked them if letters from specialists would sufffice for the VAD application and this was their response:

"Yes, letters from specialists are good. Generally we would ask for the most recent and relevant reports, we don't require your full history, the documents that have your diagnoses would be preferable.
I hope that this information helps."

Their application process seems much easier than Dignitas.

And yes, you can choose your date or even postpone the date of your VAD. You can even cancel the entire thing at the last minute. They can't force you to commit suicide, it has to be totally voluntary.

There's also a lot of info under the FAQ section on their website.

Wishing you all the best with your application.

 

[mini_weeny]

I'm so sorry you're suffering like this. I've contacted Pegasos and they seem lovely. I emailed and asked them if letters from specialists would sufffice for the VAD application and this was their response:

Their application process seems much easier than Dignitas.

And yes, you can choose your date or even postpone the date of your VAD. You can even cancel the entire thing at the last minute. They can't force you to commit suicide, it has to be totally voluntary.

There's also a lot of info under the FAQ section on their website.

Wishing you all the best with your application.

Thanks for this info, yes these guys are definitely nicer than dignitas guys. Hope we have luck!!

 

[Desdemona]

Hi, I'm very interested in following the process with Pegasus, I inquired if they would take my case and said yes but haven't done anything else yet. I have scleroderma, possibly MS but can't get a positive diagnosis until I get an MRI which I can't get because I caused myself Hyperacusis after a gun went off and destroyed my ears. Hyperacusis is my main reason for wanting to go to Pegasus. I hope you can keep us updated please!
What is the second step after they say they can take my case via Email, become a member?

fellow h sufferer here, I know what it's like and It's also mainly why I'm here. I had an MRI for another chronic pain condition and it made my ears so much worse and didn't help at all with the other diagnosis

 

[mini_weeny]

fellow h sufferer here, I know what it's like and It's also mainly why I'm here. I had an MRI for another chronic pain condition and it made my ears so much worse and didn't help at all with the other diagnosis

Ohh noo so sad to hear! Yes, so many people have got their H from getting an MRI. It's such hell. Have you thought about the Pegasus option? How severe is yours? Mine has robbed me entirely of my life 100%, my life has been reduced to existing in the couch terrified to death for 19 hours a day.

 

[Desdemona]

Ohh noo so sad to hear! Yes, so many people have got their H from getting an MRI. It's such hell. Have you thought about the Pegasus option? How severe is yours? Mine has robbed me entirely of my life 100%, my life has been reduced to existing in the couch terrified to death for 19 hours a day.

Im sorry you're in a similar position. Mines bad, I haven't really left my house in close to 6 months, very much disabled by it. The tinnitus is killer too. I haven't looked into Pegasus because there are a few drugs in trials that could maybe help us

 

[Nymph]

Good luck, hope it works out for you

 

[the_final_countdown]

I know the feeling. Terrified to exist for most of the day, lying on the couch in perpetual pain.

 

[zevon]

Hiii, you are so kind for answering me :) living near an airport seems like hell indeed, yes my H is severe I have been mostly homebound the last year since it all started and it has gotten steadily worse so my tolerance to sound is decreasing. This scares me a lot and makes me wonder if I can actually make the trip to Pegasus, I don't know if my ears can take the many noises of the journey and I live in America so it's a 12 hour flight. Seems so impossible . What also scares me is getting barotrauma or something awful from the pressure changes, I have a semicircular Chanel deshicience in one of my ears so who knows how air pressure changes can affect me.
yes i tried earplugs in the beginning but now can't tolerate them, they hurt my ears so I use headphones and muffs when necessary, still I just can't manage life with this condition it's just impossible so it is my main reason to wanting to go to Pegasus.

I'm so sorry to hear you have been going through so much pain it's really unfair how some people have long healthy lives and some of us have a bunch of disorders that won't let us enjoy life. I wish assisted dying was available everywhere and was not as expensive as it is now, dying well is a basic human right that we should all have access to.
I'd be honored to be your friend and you seem to be such a warm kind soul, I would love to know about your progress and we can chat more if you like. A good friend is always appreciated. And I send you back a warm hug!!

Hi there. I also SCD! It sucks to habituate to sound with these issues. I understand what you mean about earplugs. Even the custom ones. I have many other conditions which have no "cure" and like H, SCD, etc. it also hurts to know that our conditions are so low on the ladder of interest and priority for researchers to look into. I want to apologize for my recommendations regarding earplugs and such in case that hurt you. I get told I "just need to get out more", "take vitamins", "just breathe fresh air" and all sorts of worthless crap like that from people who don't believe me and can't even google what I tell them to so they can understand how insensitive they're being. I also know a lot of people just don't know what to do or to say to offer comfort, sympathy. Most lack empathy so the former are impossible for them anyway.

Don't mention Mental disease there, they don't accept this as a valid reason, you'll lost your dough.

Mental illnesses are the least of my problems.

I have things like MS, autonomic nervous system failure, the worst gastroparesis my doctors have ever seen. They keep making me trial medications, most of which are required to be taken with a glass of water or a small meal. If I do not vomit, everything sits in my stomach and rots and/or basically ferments. No medications work.... because they never make it to the party of my intestines where they can be absorbed properly. My case of dysmotility actually puts me at risk of unintentional overdose on the rare occasions experience dumping syndrome. It only happens a few times per year but it puts me in the hospital.

I am facing a stomach removal surgery if the ileostomy or diverting colostomy don't work. While waiting months for my GI doctors to decide what to do they fired me from their practice for having "recalcitrant systemic dysmotility aggravated by and compounded my a multitude of other complex conditions."
I was planning on N or SN but it wouldnt work properly with this condition alone.

I have severe mast cell activation syndrome, all foods and beverages now cause reactions. My MCAS is triggered by temperature changes, barometric pressure changes, stress, any physical movement, fragrances, and exercise intolerance. I experience anaphylaxis everyday and anaphylactic shock which epipens (epinephrine) do not even help anymore. I react to the epinephrine now, it's ridiculous.

Additionally, I have chronic tracheal stenosis which is suspected to be somehow related to the MCAS. They want to perform a tracheal resection and I refuse because the recovery involves having your chin stitched to your chest and is a fully open surgery for my case. I was born with pectus excavatum and have a deformed sternum which has already been cracked from CPR chest compressions and from nurses mishandling me when I have episodes of dystonia.

I have a severe case of POTS with pulses ranging from 30 bpm to 258 bpm and blood pressure that goes so low I faint every day. When I'm hospitalized I always have to be in ICU because I need a nurse to watch me when I sleep otherwise the monitor alarms are constantly going off due to my blood pressure falling below 70/50. It's just my "normal." So someone needs to physically watch me for me to get any sleep without crash carts constantly being called only for me to be conscious and confused as to why they are responding to me like I'm in cardiac arrest.

I have a mixed form of EDS but can't get genetic testing because no first degree relatives with it have been diagnosed and tested even though they have it too, albeit less severely. It's a stupid requirement to meet in order to qualify for testing my insurance will cover. I am on disability and can't afford the testing and doctor's fees out of pocket. The wait is 3+ years anyway and there isn't really any treatment that would work for me at this point.
I'm extremely hypermobile and have a morning routine of putting my joints back in before I can get out of bed. Currently typing this my shoulders are completely out as are my hips, knees and left ankle. My right ankle is only partially out. I'll eventually be able to stand and will have to push them all back in AGAIN before I can go downstairs. Everytime I sit on the toilet my hips dislocate.
My hypermobility is why I can't use any form of hanging as everything just stretches and moves around. I have no "sweet spot."

I have autoimmune conditions, kidney problems, genetic hearing and vision problems, multiple types of arthritis. Basically no discs left in my back.

Surgeries are difficult because my airway is tiny and likes to collapse. The type of anesthesia they have to use , well, most doctors aren't comfortable using them. The only ones that worked were for ECT which gave me brain damage and cause inflammation of the valves in my veins which causes my veins to collapse, as a nurse put it in layman's terms for me.

I'm not going to bother listing the other 30+ diagnoses I have that are physical conditions that any reasonable person would understand a person to have depressed and anxious feelings about. I dare you not to develop a panic or anxiety disorder from never knowing if you're going to lose the ability to breathe or what will make you lose consciousness next.

Don't tell me what nto put on my application or what not to. This is something I've looked into extensively and have been corresponding with them about. If you're very young and "only" have mental illness then, yes, you're going to lose a lot of your money.....should probably try spending your €10k (over $12K in USD) on actual medical help first.

Not sure how old you are or if you've even submitted an app to them but I really, really disapprove of your comment. It's condescending. You honestly think I haven't read their site through and through? I've been on this site since the beginning. I've been on the subreddit before it got shut down. I've been on a.s.h.

The last thing anyone needs in this community are ignorant, unhelpful comments like yours. You OBVIOUSLY didn't read my initial post. You must not be in correspondence with Pegasos and if you are I can see why they rejected your app because your low effort comment was rude and indicated an obvious lack of reading comprehension.

 

[the_final_countdown]

Hi there. I also SCD! It sucks to habituate to sound with these issues. I understand what you mean about earplugs. Even the custom ones. I have many other conditions which have no "cure" and like H, SCD, etc. it also hurts to know that our conditions are so low on the ladder of interest and priority for researchers to look into. I want to apologize for my recommendations regarding earplugs and such in case that hurt you. I get told I "just need to get out more", "take vitamins", "just breathe fresh air" and all sorts of worthless crap like that from people who don't believe me and can't even google what I tell them to so they can understand how insensitive they're being. I also know a lot of people just don't know what to do or to say to offer comfort, sympathy. Most lack empathy so the former are impossible for them anyway.


Mental illnesses are the least of my problems.

I have things like MS, autonomic nervous system failure, the worst gastroparesis my doctors have ever seen. They keep making me trial medications, most of which are required to be taken with a glass of water or a small meal. If I do not vomit, everything sits in my stomach and rots and/or basically ferments. No medications work.... because they never make it to the party of my intestines where they can be absorbed properly. My case of dysmotility actually puts me at risk of unintentional overdose on the rare occasions experience dumping syndrome. It only happens a few times per year but it puts me in the hospital.

I am facing a stomach removal surgery if the ileostomy or diverting colostomy don't work. While waiting months for my GI doctors to decide what to do they fired me from their practice for having "recalcitrant systemic dysmotility aggravated by and compounded my a multitude of other complex conditions."
I was planning on N or SN but it wouldnt work properly with this condition alone.

I have severe mast cell activation syndrome, all foods and beverages now cause reactions. My MCAS is triggered by temperature changes, barometric pressure changes, stress, any physical movement, fragrances, and exercise intolerance. I experience anaphylaxis everyday and anaphylactic shock which epipens (epinephrine) do not even help anymore. I react to the epinephrine now, it's ridiculous.

Additionally, I have chronic tracheal stenosis which is suspected to be somehow related to the MCAS. They want to perform a tracheal resection and I refuse because the recovery involves having your chin stitched to your chest and is a fully open surgery for my case. I was born with pectus excavatum and have a deformed sternum which has already been cracked from CPR chest compressions and from nurses mishandling me when I have episodes of dystonia.

I have a severe case of POTS with pulses ranging from 30 bpm to 258 bpm and blood pressure that goes so low I faint every day. When I'm hospitalized I always have to be in ICU because I need a nurse to watch me when I sleep otherwise the monitor alarms are constantly going off due to my blood pressure falling below 70/50. It's just my "normal." So someone needs to physically watch me for me to get any sleep without crash carts constantly being called only for me to be conscious and confused as to why they are responding to me like I'm in cardiac arrest.

I have a mixed form of EDS but can't get genetic testing because no first degree relatives with it have been diagnosed and tested even though they have it too, albeit less severely. It's a stupid requirement to meet in order to qualify for testing my insurance will cover. I am on disability and can't afford the testing and doctor's fees out of pocket. The wait is 3+ years anyway and there isn't really any treatment that would work for me at this point.
I'm extremely hypermobile and have a morning routine of putting my joints back in before I can get out of bed. Currently typing this my shoulders are completely out as are my hips, knees and left ankle. My right ankle is only partially out. I'll eventually be able to stand and will have to push them all back in AGAIN before I can go downstairs. Everytime I sit on the toilet my hips dislocate.
My hypermobility is why I can't use any form of hanging as everything just stretches and moves around. I have no "sweet spot."

I have autoimmune conditions, kidney problems, genetic hearing and vision problems, multiple types of arthritis. Basically no discs left in my back.

Surgeries are difficult because my airway is tiny and likes to collapse. The type of anesthesia they have to use , well, most doctors aren't comfortable using them. The only ones that worked were for ECT which gave me brain damage and cause inflammation of the valves in my veins which causes my veins to collapse, as a nurse put it in layman's terms for me.

I'm not going to bother listing the other 30+ diagnoses I have that are physical conditions that any reasonable person would understand a person to have depressed and anxious feelings about. I dare you not to develop a panic or anxiety disorder from never knowing if you're going to lose the ability to breathe or what will make you lose consciousness next.

Don't tell me what nto put on my application or what not to. This is something I've looked into extensively and have been corresponding with them about. If you're very young and "only" have mental illness then, yes, you're going to lose a lot of your money.....should probably try spending your €10k (over $12K in USD) on actual medical help first.

Not sure how old you are or if you've even submitted an app to them but I really, really disapprove of your comment. It's condescending. You honestly think I haven't read their site through and through? I've been on this site since the beginning. I've been on the subreddit before it got shut down. I've been on a.s.h.

The last thing anyone needs in this community are ignorant, unhelpful comments like yours. You OBVIOUSLY didn't read my initial post. You must not be in correspondence with Pegasos and if you are I can see why they rejected your app because your low effort comment was rude and indicated an obvious lack of reading comprehension.

You have a challenging life my friend. I'm sorry to hear about your suffering.

I wish you well. Truly and sincerely.

 

[Foreversad]

I have begun my application with Pegasos. Just received a nice email confirming my membership and that they will be sending me something in the post soon.

I was impressed the person who replied to welcome me to Pegasos seemed to recall exchanging emails with me several months ago despite putting my membership under a different email address.

I'm in my late mid 30s and do happen to live somewhere that has legal VAD but I do not qualify as I'm not terminal and won't die in the next few months from any of my conditions. I have several complex physical, neurological and mental health diagnoses. However, I have been beginning to show possible symptoms of early onset dementia and am being referred for further neuro-psychiatric testing by both of my neurologists and psychiatrist. Since this runs in my family time is now of the essence!

As one might tell from reading this I do have a great sense of wanting to share what is happening with this process and I'm obviously hoping they approve my application. I may have difficulty with this so if anyone has any specific questions please do or reply in this thread and I will do my best to keep up with it. Please have patience with timing of my replies as I am clearly struggling like so many of us are.

My feeling based on our communications thus far is that I am a viable candidate for their VAD despite having some mental health dx: treatment resistant depression for which I've been trying to treat my entire life and ended up doing ECT. Boy, do I regret that. Didn't help one bit. Anxiety panic disorder, agoraphobia, adhd and complex/chronic PTSD with a little complex grief thrown in for good measure.

Where to even begin with the physical issues, and the fact that even my doctors recognize that my mental health sucks due to the novelty of some of my conditions? Thankfully that has been noted many times in my medical records over the years.

Of course nothing I have will kill me now nor are there "cures" for anything. I'm in so much debt after fighting for SSDI. I haven't been able to work and I rose up into a position of leadership in which I tried to model compassion for all people. That's not a welcome mentality to have when your boss things it's your job to fire their employees on a Sunday, but I digress. This probably sounds selfish or greedy but I'm glad I finally got my SSDI and back pay so I can now afford the deposit and final payment as soon as I send over my medical records.

I'm not entirely sure how many records they need and what kind -- awaiting a response to that question. They are quick to reply so hopefully I'll have more information soon.

Ideally, I would not have to die in another country and essentially be forced to be cremated. I read an article about the US state of Washington approving human composting farms which would be so interesting to utilize. Plant my favorite tree or plant and help its growth process with compost made of my hurts and pains. Allow me to rise again, anew, again, you see.

Is there anyone else currently considering Pegasos or has an approved application? Once approved do they want you to get it done asap or is there a little wiggle room time wise? I know they ask for a preferred month and will work with me on figuring out a specific date. I would love to see another autumn but don't want to leave my husband behind during the darkest and most depressing time of year.

I've discussed this at length with him. He understandably hates that this is even something we have to consider, but he supports me 100%, which may sound strange to some of you and, if so, please refrain from expressing your negative opinons. I know life isn't fair, but forcing someone to continue living in agony is even more unfair.

I'm losing track of where I'm going with this so thanks for reading if you made it this far.

TL;DR Pegasos member and VAD applicant with possible early onset dementia (runs in my family) rambles and loses track of what else to say.

I wish the world wasn't so cruel.
Well, it's not the world.
The earth itself is a wonderful place when you really sit back and think about it, the environment, biological processes....I'm so sad I won't get to see the world as I'd wanted to.

Thanks again for reading.

TL;DR

Could we pm whenever you can?

 

[mini_weeny]

Hi there. I also SCD! It sucks to habituate to sound with these issues. I understand what you mean about earplugs. Even the custom ones. I have many other conditions which have no "cure" and like H, SCD, etc. it also hurts to know that our conditions are so low on the ladder of interest and priority for researchers to look into. I want to apologize for my recommendations regarding earplugs and such in case that hurt you. I get told I "just need to get out more", "take vitamins", "just breathe fresh air" and all sorts of worthless crap like that from people who don't believe me and can't even google what I tell them to so they can understand how insensitive they're being. I also know a lot of people just don't know what to do or to say to offer comfort, sympathy. Most lack empathy so the former are impossible for them anyway.


Mental illnesses are the least of my problems.

I have things like MS, autonomic nervous system failure, the worst gastroparesis my doctors have ever seen. They keep making me trial medications, most of which are required to be taken with a glass of water or a small meal. If I do not vomit, everything sits in my stomach and rots and/or basically ferments. No medications work.... because they never make it to the party of my intestines where they can be absorbed properly. My case of dysmotility actually puts me at risk of unintentional overdose on the rare occasions experience dumping syndrome. It only happens a few times per year but it puts me in the hospital.

I am facing a stomach removal surgery if the ileostomy or diverting colostomy don't work. While waiting months for my GI doctors to decide what to do they fired me from their practice for having "recalcitrant systemic dysmotility aggravated by and compounded my a multitude of other complex conditions."
I was planning on N or SN but it wouldnt work properly with this condition alone.

I have severe mast cell activation syndrome, all foods and beverages now cause reactions. My MCAS is triggered by temperature changes, barometric pressure changes, stress, any physical movement, fragrances, and exercise intolerance. I experience anaphylaxis everyday and anaphylactic shock which epipens (epinephrine) do not even help anymore. I react to the epinephrine now, it's ridiculous.

Additionally, I have chronic tracheal stenosis which is suspected to be somehow related to the MCAS. They want to perform a tracheal resection and I refuse because the recovery involves having your chin stitched to your chest and is a fully open surgery for my case. I was born with pectus excavatum and have a deformed sternum which has already been cracked from CPR chest compressions and from nurses mishandling me when I have episodes of dystonia.

I have a severe case of POTS with pulses ranging from 30 bpm to 258 bpm and blood pressure that goes so low I faint every day. When I'm hospitalized I always have to be in ICU because I need a nurse to watch me when I sleep otherwise the monitor alarms are constantly going off due to my blood pressure falling below 70/50. It's just my "normal." So someone needs to physically watch me for me to get any sleep without crash carts constantly being called only for me to be conscious and confused as to why they are responding to me like I'm in cardiac arrest.

I have a mixed form of EDS but can't get genetic testing because no first degree relatives with it have been diagnosed and tested even though they have it too, albeit less severely. It's a stupid requirement to meet in order to qualify for testing my insurance will cover. I am on disability and can't afford the testing and doctor's fees out of pocket. The wait is 3+ years anyway and there isn't really any treatment that would work for me at this point.
I'm extremely hypermobile and have a morning routine of putting my joints back in before I can get out of bed. Currently typing this my shoulders are completely out as are my hips, knees and left ankle. My right ankle is only partially out. I'll eventually be able to stand and will have to push them all back in AGAIN before I can go downstairs. Everytime I sit on the toilet my hips dislocate.
My hypermobility is why I can't use any form of hanging as everything just stretches and moves around. I have no "sweet spot."

I have autoimmune conditions, kidney problems, genetic hearing and vision problems, multiple types of arthritis. Basically no discs left in my back.

Surgeries are difficult because my airway is tiny and likes to collapse. The type of anesthesia they have to use , well, most doctors aren't comfortable using them. The only ones that worked were for ECT which gave me brain damage and cause inflammation of the valves in my veins which causes my veins to collapse, as a nurse put it in layman's terms for me.

I'm not going to bother listing the other 30+ diagnoses I have that are physical conditions that any reasonable person would understand a person to have depressed and anxious feelings about. I dare you not to develop a panic or anxiety disorder from never knowing if you're going to lose the ability to breathe or what will make you lose consciousness next.

Don't tell me what nto put on my application or what not to. This is something I've looked into extensively and have been corresponding with them about. If you're very young and "only" have mental illness then, yes, you're going to lose a lot of your money.....should probably try spending your €10k (over $12K in USD) on actual medical help first.

Not sure how old you are or if you've even submitted an app to them but I really, really disapprove of your comment. It's condescending. You honestly think I haven't read their site through and through? I've been on this site since the beginning. I've been on the subreddit before it got shut down. I've been on a.s.h.

The last thing anyone needs in this community are ignorant, unhelpful comments like yours. You OBVIOUSLY didn't read my initial post. You must not be in correspondence with Pegasos and if you are I can see why they rejected your app because your low effort comment was rude and indicated an obvious lack of reading comprehension.

So sorry to hear of your multiple excruciating diagnoses. I find curious the fact that many of these diseases come together. Did yours started manifesting abruptly but at somewhat the same time?? I got in a year and a half many of them almost together; started after ingesting home brewed kefir, a probiotic. I already had scleroderma but after that it was esophageal dismotility, no waves only tertiary waves present, now after 2 years I barely eat, I just get grossed out by food and eat little, wonder if my stomach is paralizing too, my doc suspect's dysautonomia (pots) too, and I have light headed ness when I get up and of course a handful of neurological and eye issues of undetermined cause and nature, seems like it all comes together with these diseases :( I don't think Incan make the 12 hour flight so I'm stuck.