Hey John,
Boy, I am so baffled by what has transpired with you. YOU have all the symptoms, it just does not make sense. What did DR. KLEIN say was wrong with you? DO you have arrythima's, or rapid heartbeats??? WHAT DID HE FEEL was causing these symptoms with you?? DOes he believe its your heart????? If he felt it was not CP, in his opinion, than what is his diagnoses with you?? Yes, John, I can sleep, on my back, stomach, anywhere now, BUT, back then, I had a hard time catchingmy breath....I had found that sitting up in bed, and leaning forward helps a bit, but it feels like someone is SITTING ON YOU; and you cant catch a good breath, they ended up giving me xanax, because sleep was a HUGE PROBLEM for me, before the pericardiectomy. The only problem now is my stamina, el-gone-o....I think it is from being bed bound for so long, that its going to take awhile for me to build my energy levels back up. John, one thing that CLEVELAND is awesome about, is you can call them, and ask them to fax you ALL of your reports, doctors notes, and test results, everything!!!! if I were you, I would request them all, it takes about three weeks to get everything, but, they will send you the films, reports, CD's, you name it....omg, I requested everything from my surgery, as I felt, since I live in las Vegas, what good does it do me being there, I want to have everything, as you never know....it would be interesting to see what Dr. Klein wrote in his notes, and what I have found out, is what they tell you verbally (all doctors) and what they write in their notes can be quite telling, and somtimes different, and you can find out so much more, as to what he is thinking on your own. This is how it progressed with me.....first, I started having arrythmia's...then the fatique, it baffled me, I would get in the shower to get ready; and I would start thinking, I have to blow dry my hair, put on my makeup, etc, and it overwhelmed me, and it would really upset me, as I was always a HYPER person, and I thought, why is everything becoming so difficult for me, I IGNORED IT for FOUR MORE YEARS.....remember, I had been 115pds to 118pds the last 22 years...so when the swelling started, it was extremely noticable. I was at a birthday party for my friends daughter, and, all of a sudden my stomach starting to BLOAT, to the point she had to run to her closet to find me a blazer to put on to try and hide it, that is when I started to see doctors...and John it was a joke.....I was diagnosed with anxiety, mitral valve prolapse, leaky heart valves, and, you have probably seen me write this before, but, they ordered a chest xray, and the tech wrote at the bottom, "possible pericardial calcification", and it went ignored. I found it after I was diagnosed and went back to every doctor I had seen; and requested every record in every file. The doctor either didnt' see it, OR, he thought, no way, this is too rare, no way she has this....I will never know. I continued to ignore all the symptoms, until, finally I saw a doctor here in las vegas, now remember, I was at 11mm's at that point, which is severe......the chest xray showed it, the cat scan showed it, and the MRI showed it...they shipped me off to cedar sinai medical center in LA< for a final diagnoses, I was told the only POSITIVE TEST that can tell if you are RESTRICTED is a heart cath, well, had that, and when they woke me up, I asked if I was restricted, and they said yes! THey then said, I was too severe for them to operate, they suggested I go to MAYO or Cleveland, and within weeks, I went to both. They both confirmed the same thing......I didnt' know what jugular vein distention was, but, as I told you, if you lay on the floor, with a hand mirror, and if you jugular vein is pronounced, that is a SURE FIRE way to see if you are constricted. John, you can have pericarditis, and NOT have calcification, and you can have calcification; and never become restricted...its a crap shoot. Mine was without a doubt progressing to the point where they said, I would be dead in six months if I did not have surgery because the weight of the calcification was caving in my right ventricle, so, for me, at that point, no one could miss it, I was FULL BLOWN, BUT..after I had been to CEDAR, MAYO and CLEVELAND, I came home and my local cardiogist ordered an MRI, and my diagnoses??? PERICARDIAL FAT!!! My cardiogist almost fell out of his chair, he called the tech/doctor, and argued with him; and told him where I hd been, and he would NOT change his diagnoses, he ALMOST COST ME MY DISABILITY! The strange part, is so many doctors had told me, had they caught it in the EARLIER STAGES, my life would NOT have been at so much risk during surgery, but it went missed from so many doctors. JOHN, my advice to you, is to call Cleveland, and ask for ALL OF YOUR RECORDS, tell them YOU want everything, that might really help you mentally to see what Dr. Klein wrote in his notes about what he feels is causing all these symptoms, that are mimicing this disease. Dr. Klein is right, this disease is a curse, and if you don't have it, that would be awesome, but, what the heck is causing all of this?? If you look at my chest xray before surgery, YOU can see it, its like a white cloud around my heart, I can NOT read xrays, but, this was clear too see. Dont give up John, you are a fighter, and YOU WILL FIND out what this is, and YOU will be cured, and this will all be in the past, as it finally is with me...hopefully, unless it comes back..:::shutter:::: CHRISTINE!!! CONGRATULATIONS AND WELCOME BACK! Your whole life is going to change, as mine has, and so has Nan's, and so many more.. I am so glad you are on the other side, and now you will heal, heal and heal. Take it SLOW, do not do anything, stay in bed, rest, and recover, the best medicine in the world. I am SO happy for you!! VICTORIA< welcome to our site........this place was A LIFE SAVER FOR ME, and had I not found it; and the courageous people here, who know's, I may have still been postponing this surgery, as I COULD not find a SOUL back then that had this, and the only one I did find, went to an inexperienced center, with bad results. My surgery was seven months ago; and my entire life; and BODY has changed...no more of ANY of the symptoms. IF you want the best advice in the world, and trust me, and all of us that have been through this will agree......GO TO EITHER THE MAYO CLINIC IN ROCHESTER, MINN, or TO THE CLEVELAND HEART CLINIC and see Dr. Klein and Doctor Lytle, they are the most experienced surgeons/cardiogists with this RARE problem, and we have seen so many people come and go with this "rare", ( i don't believe it too be so rare anymore) disease, and had a pericardiectomy and come through it with flying colors. Your life is worth it, I had to travel a LONG way, but, I am alive, and honestly, they had told me the mortality rate is high; and everyone here has done EXCELLENT in surgery; and if you go back and read some of the old posts, this surgery will change your life.....no more pain, no more symptoms. Good luck too you; and feel free to ask any of us anything......boy, we have been though it all. NAN, really INSPIRED me to have surgery, and I am FOREVER GRATEFUL TO HER>>>>>>>, yes, NAN, you know you were KEY in getting me to finally SET A DATE FOR SURGERY!!! And last, but certainly not least...WELCOME WAYNE>>>as for your sister, our prayers are with you and her and your family...its not easy on family members, as I watched my sons and family members go through this; and its heartbreaking. WITHOUT A DOUBT.......constrictive pericarditis can be caused BY RADIATION, and if you type in CONSTRICTIVE PERICARDITIS, and do a search on the internet, you will find, that radiation is without a doubt a cause......all of the rest of us, that have not had radiation, have what Christine called CORRECTLY........IDIOPATHIC CONSTRICTIVE PERICARDITIS, they have NO clue how we got it, or why. One thing I have done, was conducted a little survey with everyone on here, that was NOT SUBJECTED TO RADIATION, about a SEVERE FEVER sometime in their life.....it happened to me when I was 19, a complete "shake and bake", I went from SEVERE hot, to cold, for so many days I lost count. In all my years, that was the only time I was ever ill, and because I was so advanced, it made sense.......I am 43 now, and altho, it progressed SLOWLY, it progressed to a point, that my life was threathened. I hope I was able to offer some help, I have a tendency to get a bit winded on here, and sorry NAN>>>LOL, I beat you on the longest posts, and I hate doing that, as they get boring when they are too long, but sometimes, there is just too much too say.....sorry guys this got so lengthy, I just really wanted to address you all. Please all remember, and JOHN this espeically goes out too you.....its not a question of IF they will find out what is wrong, its just a question of when, and you have certainly taken the BEST steps to find out. This disease is tricky; and remember why they call MEDICINE A PRACTICE>>>>because they do not always know themselves! Hope you all had a happy holiday, and HUGS to you CHRISTINE and WELCOME WELCOME HOME! Cath