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Pericarditis & Pericardiectomy Part V

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Posted 7/13/2005 4:05 AM (GMT 0)
I'll be praying for you Brenda!!!!!!!!!

Nan
Posted 7/13/2005 5:09 AM (GMT 0)
btw can anyone tell me what the 'stuff' in the nose is about?

Hugs, Teri :)
Posted 7/13/2005 8:53 PM (GMT 0)
Hi everyone...

just checkin in on ya all........I guess Brenda has gone in....I hope all is well!

I have been SLEEPING a lot, I guess my body needs it. Still can't sleep on my sides, and can't eyawn..owie!

Andrea, I would love to send you the newspaper articles, there are three leading up to the surgery, and the BIG one, that comes out in a few weeks..the reporters and photographers traveled with us, and it should be interesting , I haven't a clue as to how it will turn out.

I can forward you the old ones, and will send the new one as soon as it comes out.

Teri...I have missed ya girl...I will be glad when the tiredness fades....love ya, cathy

Post Edited By Moderator (els) : 3/4/2006 7:13:41 AM (GMT-7)

Posted 7/13/2005 10:04 PM (GMT 0)

Hello ladies and gents,

Although I have been following this thread for about a month now and have read thru all 5 parts, this is my first post. I have found the posts informative and inspirational. I wonder how Barb3 who started the original thread and some of the earlier long term CP survivors are doing. Though I have not been formally diagnosed with anything yet but that is because the local physicians are clueless. My symptoms appear to match CP as a diagnosis so I have appointments this Monday and Tuesday at Mayo since they appear to be the leaders in recognizing pericarditis. scool

Post Edited (John99) : 7/13/2005 4:38:17 PM (GMT-6)

Posted 7/13/2005 11:58 PM (GMT 0)
Hi John99,

I think you should ask for a CT-scan. In my case the diagnosis was confirmed immediately. You should also look for a swollen vein in your neck on the right hand side. A very good cardiologist can also make a good guess from an ECG, because of the constriction, the filling of your heart stops abruptly, you can see that on an ECG. Also it shows up as a 'knock' in your neck vein. Alas, manu cardiologists do not bother to look, that is my experience.

I live in New Zealand. I had my pericardium removed last year in December. I have been doing well. I guess have been very fortunate. The condition is rare, fortunately I had a surgeon who had done one or two operations before. A good outcome is not always certain, but no treatment means pain and slowly but surely going down hill. So you do not have much of a choice if you want to live. It took me about three years to accept the inevitable. I was ready to give up gently. My cardiologist never pushed me into having an operation, the whole procedure carries quite a bit of risk.

I hope the doctors will be able to tell you what is wrong with you. Very best wishes.

henk

New Zealand
Posted 7/14/2005 12:33 AM (GMT 0)
Thank you henk!! I hope that you have been feeling better and able to do more now?!

Hugs, Teri :)
Posted 7/14/2005 12:38 AM (GMT 0)
Hi and Welcome (formally) to HealingWell tongue John!!

 

I'm sorry to hear that you have been having this happening to you and will hope that the Dr.'s that you will see next can help find out what is going on with you!! 

 

Have the Dr.'s that you've already seen mentioned Pericarditis as a possibility?  I really hope that you get this solved quickly - sometimes the 'unknown' is the hardest!

 

My best wishes to you!

 

Hugs, Teri tongue

Posted 7/14/2005 12:41 AM (GMT 0)
Cathy?  Me, tired? lol  I've just been battling some depression, but am going strong.  Thanks for thinking of me, 

 Hugs a Bunch, Teri xoxoxo tongue
Posted 7/14/2005 3:35 AM (GMT 0)

Thanks for your insight Henk, I've had 2 stress echoes and 2 regular echoes since last Feb but nothing showing up only trivial mitral regurgitation. Yes, a CT scan is my next step.

Well Teri, back in late March, I experienced pain and chest tightness along with low grade fever and cough which lasted about 6 weeks. Also I complained of pain with deep inspiration. But when I went to my primary and cardiologist, they would not recognize it as cardiac related, misdiagnosing it as heartburn or reflux. So I started doing my own research and in retrospect I realized that it was probaly an acute pericarditis attack which when left untreated can lead to constrictive pericarditis. But my doctors still don't believe me which is why I am going to Mayo next week. Although pericarditis is not common, clinically it gets missed quite often which is why I think CP is more common than what the health authorities think.  

Then around late May my body started feeling weird SOB, fatigue then progressing in late June to irregular heartbeat or faster pulse and some tightness in the left abdominal area with left hip pain after long periods of immobility. Sleeping has been difficult because when I wake up in the middle of the night I can actually feel my heart jumpstarting itself and I get numbness in my extremeties as well. The lightheadedness seems to have completely disappeared the last few days, ususually it is with me the whole morning. But I read somewhere that the symptoms go into remission temporarily only to return with a vengeance. 

And you are right Teri, it is so frustrating when one does not show visible symptoms and doctors rely too much on tests that often do not show anything significant during the early stages of a condition. More d nono ctors need to be trained more on closely listening to the patient themselves describing their symptoms/signs and trying to diagnose based on it.  

Posted 7/14/2005 4:37 AM (GMT 0)
John, you are definitely on the right track!  I can tell by your posting that you are a very persistent person and that is a good thing when it comes to one's health!  I've said it time and time again...you must be on the same playing field with your medical team!  It's your body and it sure sounds as if researched this and are taking an active part with your health - you rock!! yeah

 

Would you please keep us posted re your trip to Mayo?- and please keep dropping by here whenever you'd like! 

 

Hugs, Teri tongue

Posted 7/14/2005 2:08 PM (GMT 0)
Good morning to all of you! tongue

 

I was thinking of you, Brenda and hoping that you are doing alright!!  Let us know, when you are able, how you are feeling.

 

Big gentle hugs, Teri tongue

Posted 7/15/2005 12:56 AM (GMT 0)

John99..you are smart to go to an experienced center.  For some weird reason 99% of the doctors will not acknowledge this disease, unless it hits them in the face, like mine did..some many many years later.  And having 12mm's encased around my entire heart.  I was told by Cleveland last week, that I was by FAR the worst case they had ever seen, and rarely are they surprised, but were with me.  Some 12 years ago, I went to a cardiogist, who sent me in for an xray...the tech wrote at the bottom, "possible pericardical calcification, follow up with catscan"  My cardiogist never said a word to me; and the ONLY reason I know about that is when I was finally diagnosed, I pulled every doctor record that I could find for the last fifteen years, and low and behold there it sat, at the bottom of an xray report, that either no one cared to follow up on, or was just plain missed.  If you have read our posts, it seems the only places that seem to recognize and are able to treat, or Mayo Clinic in Rochester, and Cleveland Heart Clinic.  I was baffled as to why when I saw everyone that came out of surgery, had a complete pericardial stripping; and they were told that all the calcificaiton was removed.  I wondered why mine had not.  After speaking with Dr. Lytle and finding out, that I was indeed the worst case on record, I realized that they wanted to save my life, without risking it any further.  I think they thought, even if we can buy her another ten years...that would be good.  First time I heard the words "heart transplant".  So, I know my journey is not over...but hope that the symptoms continue to get better. John, you certainly have had some symptoms that point in the direction of cp, and one thing is certain, to get it early in the disease, is no doubt the way too go!!

WELL guys, I have dropped 20pds, and it feels good.  I was 150pds for the last three years, from a normal 120 pds that I had weighted my entire life...I am hoping it keeps on a dropping..

Ter, why depressed mama??  The queen of the upbeat personality could never be depressed...you are the glue that keeps us all together...I found myself falling down a hole last week, but mostly think it is due to staying home so much, so we went and saw War of the Worlds today...felt good to be out.

I am still sending good thoughts and karma to Brenda...who we hope to hear from soon!  love ya all, Cathy

Posted 7/15/2005 1:32 AM (GMT 0)
Cathy, you sound so wonderful and unlifting!! What a great thing! I had been so very worried about you and now you are loosing the weight you wanted (though not a diet that is recommended) lol, and you are just over all sounding great! Keep it up!! :)

Re depression...I was diagnosed with clinical depression a couple of months after I was diagnosed with Heart Failure, 2 years ago. They put me on medication and I was doing very well during this time. However, I think the accumulation of this past year of different things
finally got to me a bit. So I had to go off of one med. while by trial and error of starting the other and adjusting the dosage. I'm coming back :) don't you worry!! :) But thanks for caring...even mod.'s have problems sometimes. :)
Very Big Hugs, Teri
xoxoxo
Posted 7/15/2005 1:55 PM (GMT 0)

Hi everyone....welcome John!!!  Are you going to Mayo in Rochester?  Which MD are you seeing?  They are good there.  The tip-off for my doctors to keep looking was an enlarged liver...I had several normal echoes but if they aren't looking for it on an echo I think it is easy to miss.  I had my surgery at Rochester Dec 15 of last year and it has definitely been life changing as well as life saving.  Let me know if I can help in any way! Good luck next week!  I hope you find answers!

I'm thinking of Brenda...hoping all is going well!

Cathy...they left some of my pericardium on over my phrenic nerves...they said it was not worth the risk of nerve damage (pain, trouble breathing) when they had opened up the rest of the surface for my heart to have room.  They said that was common.  Did they leave quite a bit on for you?  They did more than a window though right?  Were they able to fix the ventricle that was weighed down?  Sorry if too many questions, just curious.  Congrats on the 20 pounds...doesn't it feel great?  Can you breathe easier?  Is the pressure gone?  Are your symptoms going away?  That is fantastic.  I'll be looking to see your article too!  Keep up the great recovery!

Teri...you must be one amazing person to listen to all of us when you are going through all of that yourself!  I hope things are getting straightened out and you are feeling relief!

Later all...Nan

Posted 7/15/2005 7:27 PM (GMT 0)
Hey Ter, I have read so much that after having any type of open heart surgery that depression follows, they do not know why, but said they see it in 99% of all cases.  In fact, when I was in surgery, they had a class that my family had too attend.  They told my family to expect depression, and that it could LAST a VERY VERY long time...so, I have no doubt you are experiencing the expected blues that follow such an invasive surgery....I know we all look to you, and that you are without a doubt one of the most unselfish persons I have ever met!!  I am so happy to know you!!

NAN...

where do I start....WELL< today I signed all the paperwork to have ALL of my records sent too me, I faxed them to Cleveland, they will be sending ALL films, (altho charging me ten dollars per sheet) and all doctors notes, ICU notes..hospital notes, and anything and everything that pertains to me and my surgery.  SO, I have a the feeling I will find out more once I read those, BUT, Dr. Lytle told me that he took a lot off, and that the surgery was a success.  I wonder how much was for the newspaper that was hovering around, and how much was real.  BECAUSE when I was in the hospital, the resident surgeon who assisted came in and said that how shocked they all were at the amount, and how Dr. Lytle only took off what he could wihtout risking my life.  HOW much that is, is in question..he said area's as big as silver dollars, and of course in the back nothing...I wonder what happens if your constriction is IN the back of your heart...and if they have not removed any there, if a person can get better??  How do they know which PART of the calcification is the constricting part.

I like you, had an enlarged liver as well...three breadths, which is the amount of three fingers put together, I know your right in telling John if he can have his liver checked out, that is a big sign.  As far as my right ventricle, they said it did not POP out like they wanted, but felt that it would get stronger in time...I am planning on having an MRI, chest xray, catscan, and even possibly a heart cath in a few weeks, actually as soon as my records arrive, which they said two weeks.  TO compare before and after.  I think that is the only way to get an exact answer since Dr. and resident had different stories...also, its a big fog...the last days in the hospital, so I can't really recall all what they told me, it seems to me it was not a lot tho.  I was surprised they shared with us the fact that I had to be paddled during surgery, from what I understand, that is when they bailed...worried about stroke..heart failure from that point on..I do know this..THE pressure is for sure GONE....the ascites is FOR SURE GONE....also, the neck vein has gone down an INCH, and no arrythimia's since I have been home, which is so bizarre not feeling my heartbeat.....I LOVE IT...

The weight is falling off...I am now at 139 pds...from the 150pds I was in the hospital.  Also, remember the pressure in your head while laying flat on the back..that has lifted as well.  SO, all in all, I feel the surgery was a success...I just want to KNOW exact...exacts....exactly...its my personality.  I have to know everything!  Still can't sleep on my sides yet...arggg..and the pain is still jabbing and burning, but some days better than others...have a great day guys..love ya, Cathy

Posted 7/15/2005 8:04 PM (GMT 0)
Cathy...I read your posts with admiration because I believe you are a survivor and will always find a way!

Teri...our society places a great deal of attention to superstar athletes and famous entertainers which play a part in helping us take our mind off every day problems. But I think the real heroes and heroines are the people such as yourself that are dedicated in making others feel better. I applaud your daily efforts!

Appreciate your offer of help Nan...it is always nice to chat with someone that has been thru the same experience and at the same clinic. The cardiologist assigned to me is Dr Sarouk Mookadam in Rochester, he supposedly has me ordered X-rays, echo, and CT scan (probaly whole body) and blood work  according to the Mayo clinic scheduler, it is at least a 2 day visit. I will be bringing my X-rays and previous echoes with me for comparison. I believe you stated Mayo runs like a "machine" and I have heard mostly positive experiences from there but do you recall anything I should be aware of or specific questions that I should have the doctor address?

Henk...my wife and I visited Auckland and RotaRua back in August,1996 which is your winter so it rained quite a bit but at least the geysers and tourist sites were not crowded. I bet things have changed in 9 years. 

John 

Posted 7/16/2005 1:50 AM (GMT 0)
Hey Everyone!  Just doing my usual check in with you

all!! tongue

 

Brenda - wishing you a speedy, uneventful recovery!!  Please check in when you are able...

 

Thank you everyone for you kind and caring thoughts, I really do appreciate them! :)

Wishing you all a great, safe, healthy weekend!! yeah

 

Bunches of Hugs, Teri tongue

xoxoxo

Posted 7/16/2005 6:09 AM (GMT 0)
Hi Cathy,

 

You wrote.. "what happens if your constriction is IN the back of your heart...and if they have not removed any there, if a person can get better??  How do they know which PART of the calcification is the constricting part?"

 

You know I asked the very same questions...my understanding is that it is very rare that they remove the back part... only when it peels off...  when the top of the Pericardium is removed the heart pops and "automatically" adjusts... it moves around a bit into a comfortable - non-constrictive -  position...

 

I wonder if this is correct or somebody might have a more scientific explanation...

 

Mrozek

Posted 7/16/2005 6:25 AM (GMT 0)
John99, My symptoms were exactly like yours... Started about 2 years ago ...chest tightness, low grade fever, cough which lasted about 10 weeks. Diagnosed pericardial effusion...

Continued with several month of SOB, fatigue, tightness in the abdominal area.... lightheadedness in the morning... I was better in the afternoon... Finally I was diagnozed with CP last Sept.

By the way, I read that beyond a certain age CP is VERY common.. often with other illnesses some level of constriction develops... Since pericardiectomy is risky... docs don't want to it... I don't blame them.

I wish there was a magic drug to do the job...!
Posted 7/16/2005 6:31 AM (GMT 0)
Hi John,

I live in Christchurch on the South Island of New Zealand, it is a long distance from Auckland. I have only visitied Auckland a couple of times. The North Island has all the volcanoes and geysers. We have the Alps and the forests!! You will find that change is slow here. The best time to come is April or August! If you ever come this way you should extend your trip to see part of Australia.

John, i hope you will know a lot more after your visit to the Mayo clinic.

An enlarged liver is also a very good indicator. My liver was also very much enlarged, it is now back to normal but some of bloodtest are still not right, but it is not something that is worrisome. My bloodpressure has stabilized to a nice 125/75. I used to take about 1000 mg of diuretic every day.

I was not on the heart lung machine during the operation, the surgeon removed the pericardium with my heart beating, very clever.

Unfortunately because I had the condition for so long my atria are permanently enlarged and I have therefore chronic atrial fibrillation, I have a pacemaker. I will never be really fit again.

That's why it is much better to have the operation done as soon as possible.

Cathy, if you think you feel better, then that is the case. It maybe alright to want to know everything, but at times it is also good to try and forget about it. That is easier said than done, this experience will be with you for ever. I can feel my pacemaker every day. i need bloodtests every fortnight, so I will always be reminded.

Terri, I was warned that depression was a great possibility after this operation. The best medicine seems to be a good caring partner or a caring family or community.

Very best wishes


henk

NZ
Posted 7/16/2005 6:42 AM (GMT 0)
Hi there again,

I was told by an Indian doctor in Christchurch that constricted pericarditis is not that unusual in India because of the prevalence of tuberculosis. In the past it happened because of radiation treatment, in this the outcome was usually very bad, but these days the machinery is much better focused, but heart damage is still a possibility, of course cancer patients do not always get this information. Very, very rarely it can happen after a bypass graft operation, the pericardium is cut into and it starts to scar and harden.

In my case most of the pericardium was removed, only a little bit was left, I do not know how much, I really do not want to know. But I think they got most of it behind the heart too. I have read somewhere that if the constricted pericarditis is because of tuberculosis the pericardium comes of more easily. But I am not an expert.

henk

nz
Posted 7/16/2005 4:07 PM (GMT 0)

Henk, thanks so very much for all your info!  yeah Since I began moderating this particular thread, I've learned so very much from all of you!  I continue to learn and read as much as I can, and I, too have heard that one of the most common causes of pericarditis is a viral infection. 

'However you are correct - there are other causes as well, including a Heart attack, Bacterial infections, Radiation treatments for cancer, Kidney failure, HIV infection, Tuberculosis, Hypothyroidism, Autoimmune diseases such as Lupus, or even  a chest injury and certain drugs!'

Keep all the good info coming!!  Hugs, Teri tongue

ttp://my.webmd.com/hw/heart_disease/hw169332.asp?src=Inktomi&condition=healthwise

 

 

Posted 7/16/2005 6:47 PM (GMT 0)
 

Henk,

I could be wrong... I read the opposite... if the constricted pericarditis is caused by tuberculosis.. it is harder to remove... fibrinous pericarditis...??? 

I got this link to a series of these photos, very interesting...  not the most appetizing of course...

http://www-medlib.med.utah.edu/WebPath/CVHTML/CV047.html

Posted 7/16/2005 7:30 PM (GMT 0)
HI All,

I just was dismissed from St. Mary's Hospital. The surgery went well. The surgeon came out and told my family, that it was pretty ugly in there. I guess I had a lot of calcium built up around the entire pericardium and heart. There was also some white goopy stuff that they sent to the lab. I have had a pretty good recovery so far. It was my back that is so sore but that will heal. Well, need to go and rest. Thanks for all the good wishes.
Brenda
Posted 7/16/2005 7:43 PM (GMT 0)
Mrozek, you were right...'interesting, but not appetizing' lol especially the "bread and butter".

Hugs, Teri :)
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