I am SO open to some HONEST KIND thoughts!

Chest and lungs
1

I'm feel like things are trying to spiral out of control on me!

I went to bed one night in Feb 2000 and was so far as I knew healthy. I woke up the next morning short of breath. It's been a downhill slide from there! Here I am 16 1/2 yrs later. I'm on 6L of oxygen at rest and 8-10L on exertion. Not only can NO ONE figure out what's wrong with me, but they don't even know why I need the oxygen. In all the years, there have been over 30 hospitalizations with multiple intubations after I've gone into respiratory failure and I have been told on as many as 3 occasions that I ALMOST died! AND YET . . .  EVERY SINGLE TIME I have to go through a psychiatric evaluation to determine to SOMEONE'S satisfaction that there is no psychosomatic componant. EVERY TIME! They always tell ME that I'm fine that it's not psychosomatic, and yet no one will let it go! It's truly putting my health at risk. I don't suffer from anxiety, I have no fear of dying. I'm in the hospital for God sake. That's the best place to be to be taken care of. I may be physically MISERABLE, but they'll do what they can to take care of me. So I try not to focus on not being able to breath and have developed excellent coping skills to attempt to stave off the normal anxiety. I almost NEVER feel anxious. At least not because of my breathing. I do get a liitle worried when I feel like I'm not being taken seriously though and I'm concerned about the additional health problems that may be being added to my current problems from the stress my body suffers from not being properly treated at times.

Perfect example is what I've just been through. I hadn't been feeling well, like at my base line. So I checked with my doctors schedule to see what his upcoming availability was like. That was June 6th. He had ONE appt on Tues. the 7th and then NOTHING for two weeks. That meant he was most likely going to be out of town and if I did have a problem and have to go to the hospital, there would be NO ONE around that knew me. Where ever I went they'd call his practice which is quite large and get whomever was on call to look into my records and the wouldn't find anything helpful because, well, NO ONE can figure out what's going on! So I decided I'd better take the appt with him the next morning the 7th. I drove the hour to his office and got 5 min out I drove through and area where I could smell fresh cut grass. I knew in SECONDS that I was in trouble. Normally it doesn't bother me. But if I'm below my baseline functioning everything seems to bother me. My airway becomes very twichy. I got to his office, and within 45 min I was in an ambulance going to the ED. I spent 2 hours in the ED and was then admitted in CRITICAL CONDITION to the Medical ICU. Within 30 min I was intubated due to respiratoty failure. I spent two days on the ventilator while my body tried to reset itself. On Sunday the 12th I was transferred to the regular floor, where on Monday I had another flair up. It was totally predictable. But there were some issues, and as a result I didn't get the treatment that I should have when I should have. I was supposed to have an inhaler to use, but it hadn't come up from the pharmacy, by the time I got it I was unable to use it. By the time I got a nebulizer it had been an hour without treatment. I went unresponsive so they called the rapid response team, a highly trained specialized group of doctors, nurses, respiratory thearapists etc that respond to emergent situations through out the hospital as needed. By then it had been almost two hours since it had started. IN TWO HOURS NO ONE PICKED UP A STETHASCOPE TO LISTEN TO MY LUNGS!!! NO ONE! When rapid response got there, they listened and said I was moving almost NO AIR . But I was moving JUST ENOUGH to have the gas exchange happen which aloud my body to keep my O2 sats above 90%, the acceptable range. Never mind that my VERY normal blood pressure of 90/60 SORED to 206/77 because I was working so hard to breath! But NO! I don't have a problem!!!! I test NEGATIVE FOR EVERYTHING!!! I might have MILD asthma, but supposedly NOTHING that would cause me this much trouble! I have been tested for SO MANY THINGS!!! Always, NEGATIVE, NEGATIVE, NEGATIVE!!! I was sent home on June 15th. I'm still so far from baseline that I can't even bathe myself yet! It's really to the point where it's ridiculious!

I can't stand it anymore. Part of me, and PLEASE DO NOT READ INTO THIS WHAT IS NOT THERE!!!, but part of me almost wishes that I would just die from it and we'd all be done with it. But THAT'S NOT what I WANT! But the stress on my body is really beginning to take it's toll. My family is just beside themselves with concern and not knowing what to think. 

AlLL I want is to be given palluatuve care!  We often only think of palliative care as being for the dying. But that's not true. Not anymore. I have a chronic illness of some kind. I DO NOT CARE IF THEY GIVE ME A DIAGNOSIS!  I just don't. All I want them to do is when I show up keep me as comfortable and safe and they can in order to assist me to returning back to my baseline as possible and help me maintain as high a standard as living as I can. THEY DON'T HAVE TO FIX IT!!! BECAUSE THEY CAN'T! If something new crops up, like the acute eposodic heart failure that I've had. Treat it. Fine. But I'm so sick of because a doctor isn't taught to be comfortable with saying "I don't KNOW!" Then its ME that there must be some HIDDEN SECRET problem with or something! I'm beginning to FEEL like I SOUND psychotic when I talk to them about it! They asked me in the ED if I wanted to be intubated. IT'S A  SIMPLE QUESTION! ONE I WAS AFRAID TO ANSWER BECAUSE I WAS AFRAID IT WAS A TRICK QUESTION! I WAS IN FREAKING RESPIRATORY FAILURE!!! ARE YOU KIDDING ME!?!?! WHAT THE HELL IS WRONG WITH ME!?!? I feel like they are CREATING a psych problem, or that they certainly will if they don't leave me the hell alone with this crap.

PLEASE!?!? Tell me I'm not sounding as off the wall as I feel like I do! I'm feeling like I'm FAST running out of rope! 

Feel FREE to ask what ever questions you want! Please be honest with me and give me your thoughts. I don't have to like them! I just want to know what other people think about this! Just be kind, gentle, and loving in your approach, because I'm REALLY feeling like I've just been beaten by the local mob! I really just don't know how much more of this that I can take. I have done EVERYTHING that has been asked of me. I am a VERY compliant patient. I don't doctor hop looking for someone to tell me what I WANT to hear! I would LOVE to be well! I would LOVE to join the human race again! I just someone to take me seriously and believe me without having that DAMNED QUESTION MARK hanging off the side of their head!

Please guys. Something. ANYTHING!

2

Wow you have gone through the ringer...I am so confused how can you have a o2 level at 90 0/0 . I have asthma and my o2 is like 91. So sorry you have gone thru this. There has to be a answer to what is going on. I have a g/for who had surgery but the surgeon put something in her he shouldn't and she is going thru similar problems. She has been in and out of the hospital for collapsed lungs etc.you might look into that

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OMG! I feel your pain, but you need answers it must be driving you mad.  I have been ill this past 10 years, maybe more.  I have Asthma, Samter's Triad and Auto immune diseases. Nothing as bad as you.  But, yes me too thought, and sometimes still do, think its in the mind, but luckily each ailment I can eventually be linked to Auto-immune or allergy.  Could this be an auto-immune disease?  I say this because I have nothing as bad as you, but a lot of my friends have.  My breathing can sometimes go, no warning at all.  Luckily I have a nebulizer and often have the medication by the side of it ready to put in and on.  It has saved my life many times.  And no, after all these years nobody understands how my attacks happen and why, but they put it down to my auto-immune disease.  There are various, funny enough this site helped me find out various types and understand them.  Have you been tested for Vasculitis?  Read on here Vasculitis, quite a few types have Asthma/Breathing problems.  There are various sites/support groups if you have.  I wish I could offer some help, I understand your desperation. It took me to email an allergist to find out what was wrong with me, I had seen everyone at my local hospital, everyone.  It was not the breathing side at that time it was the gut.  It could well be an auto-immune disease of which there are many.  I never believed in this allergy stuff either, but I was proved wrong.  My type of Vasculitis causes allergies.  I have always been allergic to Aspirin, but I am also allergic to Steam and water up my nasal passages too. That stops me breathing.  I am also allergic to foods and unfortunately a lot of medications.  Steriods are the only thing keeping me alive along with chemotherapy.  I was lucky one Asthma/Allergy attack happened in hospital, it was normal for me, but my local hospital staff were totally shocked and fortunately it got properly documentated.  Sorry long reply, but I feel your desperation.  If it is a form of Vasculitis then there are many good help groups.  You say ED are you in USA/Canada?  If so there are quite a few good clinics in USA for Vasculitis and also a very good Vasculitis association which may be able to help you.  Hope you get some answers soon because I know before diagnosis with me it broke me.  If you find out, please post on here because I am sure you are not alone.

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Thanks Michelle! You're so sweet! I am actually in the US. I live in Greensboro, NC (southeastern costal state)

As for the vasculitis, negative. They've looked at that too. I've been VERY careful about keeping my healthcare centralized over the years because I didn't want anyone thinking I was trying to "doctor hop" either looking for attention or drugs or anything else OTHER THAN getting better! Years ago when all this started, I lived in Chapel Hill, NC where UNC Hospitals is located. It's a university teaching hospital and they have some of the finest, nationally recoginezed doctors in the country. Some are even internationally recognized. So, it's not likely that I could get better health care anywhere else. Which is a double edge sword. It's nice to know that you're getting the best of the best, but at the same time, it can be a little daunting to realize even though they can't figure it out, there's really not anywhere else TO go! 

You know, what I feel is really kind of oxymornic, in that I can deal with the being sick part. What I CAN'T handle quite so well is that because they can't figure out, and because they aren't taught and therefore are uncomfortable saying, "I don't know.", and because it HAS to be something . . . right!?! Well, then if they can't figure it out, then that only leaves psych. But it's NOT psych! I PURPOSELY have maintained a 15 yr relationship with a WELL known and WELL respected psychiatrist JUST so I could create and maintain a SOLID record of mental and psychiatric stability. I've done everything I've been asked to do and then offered and done above and more than I've been asked, and yet, EVERY TIME I get admitted to the hospital, I've subjected to ANOTHER psychiatric eval. And of course because they don't KNOW you the opinions have varied WIDELY! Except for the people that I see on a regular basis that DO KNOW me! Part of the problem is expectation. They EXPECT that when someone can't breathe properly that the person is going to suffer from varying degrees of fear and aniexty. That in fact at some point the body's physiology takes over and you begin to enter into respiratory failure the chemical changes that occur actually can, will, and DO create anxiety. But, over the years, I've had SO much practice with this that I've actually managed to develop distraction techniques, if you will, that have allowed me to actually over ride those changes. Basically, creating a mind over matter situation. I KNOW that if I concentrate, focus or anything similar to the fact that I can't breathe properly then I WILL become anxious! GONNA HAPPEN! So, I try to NOT think about it. I may even go so far as to try to play games on my cell phone, not that I'm going to do well at it, but that's not the point. The point is to REMOVE/REFOCUS your thought processes onto something OTHER THAN the acute problem! I add to that two things. 1) First and foremost is my VERY DEEP faith and belief in God! I'm TOTALLY confident that He has EVERYTHING under control! That were I to do, I'm CONFIDENT of where my soul/spirit would go! I don't HAVE to worry about! He has a plan! And regardless of the outcome of the situation at hand, His plan is ALWAYS going to be far superior to anything I might have come up with!  2) I'm in the RIGHT PLACE! I'm IN THE HOSPITAL! If ANYONE can make it (being the symptoms) better,  . . .  it would be RIGHT THERE in the hospital, whether its in the Emergency Dept. (ED), or whether its in the Medical ICU. I'm IN THE RIGHT PLACE! So, again, I don't feel the NEED to "worry" about what's happening to me. And actually there is a third component. I went to nursing school. Unfortunately, at the time I had 3 children that were under three when I started! My husband, at the time, since divorced, drove a truck cross country and was gone for 4-6 weeks at a time. I got SO tired taking care of the house, the kids, going to school and studying that I hit that proverbial wall and HAD to take a break! I WAS 9 WEEKS from being DONE and being able to sit for my boards! AHHHH!!! I always meant to go back, but life has a funny way of happening, so it DIDN'T happen. But the fact is, I HAVE the knowledge! I know SO much more than the average person about what is going on with me and my body! I KNOW what all those numbers on the monitors mean! It REALLY makes a difference in being able to remove any "fear of the unknown" factors! So, do I ever get anxious with any of this stuff? Sure I do! BUT, I also know HOW to deal with it! And even better yet, I know how to IDENTIFY WHEN I've been UNSUCCESSFUL in dealing with it, and I know WHO to tell and WHAT to ask for! It's a beautiful system! And . . . it works  . . . for ME! So all that said, I have this wonderful relationship with a psychiatrist that I DON'T NEED, (he really is a great guy though). I have a 15 yr record of ROCK SOLID psychiatric stability, and yet . . . EVERY TIME I get admitted, I have to go through yet ANOTHER psych eval! AND . . . were I to REFUSE . . . it would only serve to confirm in their minds that there is indeed something to the psych angle! So, I don't even feel like I can say "No!" I just want to look at them and screem, "When is it EVER going to be enough!?! WHEN!?!" Well, yeah, you can't do that either! Would have the same result. But what makes it SO maddening is that I ALWAYS give the new psych consult person ALL the contact info for the guy that I've been seening. And they always say that they've contacted him, and yet, when I talk to him, he informs me that NO ONE has called him! NO ONE! So, YET AGAIN! THEY'VE LIED TO ME! AND I'M THE ONE PLAYING GAMES!?! SERIOUSLY!?!

Ahhhh, and they wonder why I get so frustrated! But after writing my intial post above, I came up with an idea. I REALLY hope it works. I actually saw my primary doctor today. I've typed up a document that he, of course will have to rewrite, but the idea is that it contains the information that ANY doctor would want if I show up in the emergency room and/or get admitted. It presents to them me, the patient, who I am, what we know about my situation, what we don't know. What we do to treat it, how long it takes to see results, the fact that I will almost assuredly get worse before I get better, the fact that I may well have to be intubated for the interium, that ALL I want as an impatient is to be kept as safe and as comfortable as possible, to help me regain my base line status and help me retain as high a functioning life and quality of life as is possible under the circumstances. That I DO NOT want them to spend any more time and effort in trying to diagnose this. But that if something new comes up or if the current symptoms appear to be worsening, then fine! They're welcome to investigate the new, but the old, just needs to be left alone! After 16 yrs, it's not terribly likely that anyone is going to figure this out. it just is what it is. I want this document to be the "front page" if you will of my medical record so that if anyone from the UNC Hospital system pulls up my record, that will be the FIRST thing that is seen. There would be NO missing it. That way, what ever facility/hospital that I end up going to, if, rather when, they call UNC for my records they'll be given this document and they'll know how to proceed. I gave him the write up that I created today, of course with the understanding that he will have to rewrite it in his own words. But after doing so, I have to read it and agree to EVERYTHING that's in it. That EVERYTHING that I covered in MY write up MUST BE covered in his rewrite. I know we can't tell other doctors what to think, or how to practice medicine. They're going to think and do what they want. That said, if this goes into play, and if it will just dial back some of the insanity for me and my family AND for the doctors who treat me emergently, I think EVERYONE will be better off for it! I'm hoping to create a WIN - WIN for all involved!

But, back to one of your original questions, as to it being something auto-immune. That's kind of where/what we've been thinking from the beginning. That it's probably a combination of MULTIPLE auto-immune disorders. But the problem is, everything we test for comes up negative! This time, though, as strange as this sounds to say, I actually had some "stuff" show up that NORMALLY checks out ok, even when I get admitted. Along with going into respiratory failure, it was somewhat precipitated by some small amount of plueral effusion and pulmonary edema. I FINALLY just today got to see most of the blood work results, xray results, the CT scan results (that I didn't even know that they'd done, while I was intubated), etc. . . And MAN! I was REALLY a SICK PUPPY this time!!! I was actually VERY SURPRISED at just how sick I was this time. No wonder I felt SO bad! But, that's what makes this so hard for them, the doctors. Because I WAS SO SICK. And THAT'S what they're there for, to either fix it or make it better, but they can ALMOST ALWAYS tell us WHAT'S wrong. But this time they can't. I'm just hoping that if I can convince them that I'm okay with them not knowing, that it's okay for them to be okay with it too. ALL THAT SAID, I also realize that the ONE BIG problem with all of this great PLAN of mine, is that, to treat this kind of stuff, you USUALLY TREAT the UNDERLYING CAUSE! But, NO ONE KNOWS what THAT IS! So, it kind of creates a conundrum for them, how do they treat the symptoms, if they don't know the cause!?! Because, somethimes, depending on the cause, you treat the same symptoms differently . . . Don't know how that;s going to work out! I guess time will tell! :-)

Michelle, thank you so much for getting back with me. It's REALLY nice to hear back from people! And you thought YOUR answer was LONG!!! Ha-Ha! 

I hope you continue to do well. It sounds like your on the right track. For me, the concensus is that it's PROBABLY some form of auto-immune related Interstial Lung Disease. Right. There's only about 130 or so diagnosis' that fall under the ILD umbrella of diagnosis', so I've been told, but there may even be more. but, until something starts showing up on tests, I'm content with being kept comfortable. I mean, really, realistically, if they can't diagnose it after 16 yrs, IF they could figure it out, I SERIOUSLY DOUBT they'd be able to treat it any better than they do now, let alone "cure" it! 

Bottom line is this, I'm okay! I was having a MAJOR spaz out moment of frustration when I posted. I guess we're all allowed to "lose it" occassionally! But I really am okay, and I will be okay. As long as I can get these guys to stay out of my head! I don't really think that's to much to ask!

Please feel free to stay in touch! 

Shelly (which by the way, is actually short for Mishelle!)

5

Ha!Ha! Another Michelle.

Thank you for your reply. OMG! What you have been through, believe me you are not alone.  I still have loads of unexplained problems, nobody seems to care here.  Fighting all the time even with diagnosis.  But that is terrible that you have to go through all this.  Have they tried steriods or some form of chemo?  A lot of my USA friends swear by Cleveland Clinic.  I do/did have another friend who was/is suffering so with undiagnosis, she did for years.  Unfortunately, with my illness etc I don't get on Facebook much, but she joint a group on Facebook called "Limbo Land - Waiting for Diagnosis" its a closed group and mainly people from USA.  Unfortunately and bad of me not been on there for a year or so.  I should because this friend is a wonderful lady.  Just with fighting for GP and Hospital appointments and living with this I am not on internet that much.  Might be worth a try especially as there are people similar to you on there.  As I say it was my allergist who eventually diagnosed me, although I had joined a group like the one I quote, a USA one and they did thing I had Churg Strauss Syndrome (EGPA) but I thought no it cannot be, they were right.  So I may have got diagnosed a year earlier if I had the guts to confront my GP. 

I understand, re the medical stuff, I too was lied to many times by Doctors/Nurses.  I am always in trouble.  Everyone who knows me thinks I am jinxed. I always expect problems because nothing goes right.  Ha!Ha!

Do you use Facebook, I do, don't know what I would have done without it.  Finding a group who can support you, a closed group is wonderful.  I have learned so much and been helped so much more by fellow sufferers than any Consultants.  I would be dead without my USA fellow sufferers, they told me to get a Nebulizer.  Here in England they don't let you have them for Asthma etc.  But they all wrote me emails with the pro's and cons and how it had saved their lives.  My Respiratory Consultant was adamant that he would not let me have one, but after producing all the emails and documents I got one straight away.  It has saved my life many times. My breathing suddenly goes.  My asthma is silent, I never have infections etc, I can be fine one minute, next thing I cannot breathe at all.  I have my nebulizer loaded just in case, I have actually passed out with it on several times and come around an hour or so later.  Yes I would be dead without my USA fellow sufferers advice.

Feel free to stay in touch.  I am on Facebook if you want too.  There is a picture of a black dog, not me. 

I hope you get answers soon. It really is better to have a diagnosis even if its a bad one. Not knowing must be driving you around the bend.

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Hi Michelle,

Yuppers! Another "Mishelle"! Only I NEVER use Mishelle unless I'm FORCED to do so legally. The only time I ever heard Mishelle while growing up was when I was in trouble. So, I "bound" to Shelly MUCH better!

So, It's Wed, July 7, 4:30 am here.  And once again, I just got back from another hospitalization about 12 hours ago. I went back to the Emergency Deptarment at around 6:30pm on Sat. July 2 and was readmitted to ICU early in the morning on July 3. They almost reintubated me, but managed to pull me back from it. More steroids, lots more breathing treatments, and then FINALLY! When I was discharged, they said I was medically stable, but still had dimished breath sounds. 

The absolute worst was that while I was in the hospital this time, I was able to access my discharge summary from the hospital stay in June. It was absolutely devastating to me! I could not believe some of the things that they said about me without even knowing me. Totally discounting the things that people/doctors that have KNOWN me for 15 & 16 yrs have said. I feel like I'm fast approaching the place where even if I show up, I won't be properly treated medcially because of the garbage that's being put into my medical chart. Things like I exihibt narcissistic personality tendencies.or borderline personality traits . . . I mean GOOD GRIEF! They HARDLY KNOW ME!!! Those are some pretty DRAMATIC statements to make about someone that  you hardly know! NOT TO MENTION, yeah, remember that psychiatrist that I've been seeing for the last 15 YEARS? The one who's supposed to be maintaining a LONG STANDING record of Psych/mental stability? Yeah! HIM! HE SAYS . . . "NO WAY!!!! Don't worry about what they're saying! They're WRONG! THEY DON'T KNOW YOU!" So, yeah, okay. That makes me feel a LITTLE bit better. but, still, now I have all this crap written in my record for ALL to see. It scares me to death to have it in there, if for no other reason than NOW, when I show up, they'll likely not treat the MEDICAL condition with the same verasity as they otherwise might have. These people may very well UNITENTIONALLY get me killed! I don't understand how one person can do everything that's been asked of them, and been as compliant as one can know how to be, and still . . . just because  THEY can't figure it out . . .it HAS TO BE psych in nature! I've never been so humiliated and embarrassed in my life. I don't even want to show up in the ED anymore, as I'm never sure what's going to happen! They are CREATING an anxiety component, allbeit unintentional, they're still creating it. I fight it, but I'm only human, and it frightens me sometimes because I feel like I sometimes feel the solidness under me begin to slip away. THAT does bother me. I just pray and believe that God has it under control. I have no other recourse. I truly do NOT know how other people walk through this kind of mess without a FIRM belief in God! As long as I leave it with Him, I'm okay, but as soon as I start trying to carry the load myself, yeah, not so much! So, the true test becomes learning to leave the burdens with Him.

So yeah, I'm home, and for the moment okay. I still feel pretty sick and quite weak, But I can only hope that that too will improve day by day. I go back to my regular doctor tomorrow. We'll see. One of my biggest fears is that I'm going to lose his confidence in me because of what these other hospitalists doctors say. I just pray that doesn't happen. I would be SO LOST with out his backing! 

Talk to you later - Shelly - ps. took awhile to write this - kept falling asleep. As I hit the "Reply" button it's now 9:22 am Thurs. Jul 7th here . . . 

7

Hey! Thank you so much for responding! You know, I actually typed out a response to you right away. I'm not sure what happened to it, but if I were to guess, I'd say that I did something stupid like typed it up, THOUGHT I hit reply then closed the the tab, which would have basically erased everything that I typed WITHOUT having sent it! So, my apologies! WHAT A HORRIBLE thing for your girlfriend to have to go through! I'm so sorry! I hope that she finds a resolution SOON! This kind of thing is SO hard to live with sometimes!

I again, just got back out of the hospital yesterday. I had been back to the ED a total of 3 times since the first hospitalization in June, but this last one on Sat. July 2, they readmitted me to the ICU then down to the stepdown ICU, then to the regular floor. And finally I was discharged home yesterday afternoon. They almost intubated me again, fortunately, they were able to avoid it. So, we'll see what happens. But yeah, I'm REALLY getting tired of being the medical conundrum! And as such, seeing as how they can't figure it out, somehow I suddenly become the resident psych patient! It's wearing REALLY THIN!!!

They've looked into "everything" and find NOTHING! There in lies the problem! I truly hope your girlfriend gets better soon!

And again, thanks so much again for caring enough to touch base with me on this! 

Kindest Regards ~ Shelly