Pericardiectomy

Welcome to HealingWell, Storri!!

 

I'm so glad that you've found us and I hope with some of the others here and their help, that you'll find you are definitely not alone!

 

You sound like you've put yourself in excellent hands!~the Cleveland Clinic has an excellent reputation and I wish you all the best!

 

Teri

 

PS  Make sure if you have any other questions, you be sure to ask!

While this disease is not completely unknown to me, I'm far from being experienced with this.  I've done some research trying to get some help that may give some of you, like HaveFaith, that are still having some questions, some new thoughts re this to discuss with your Doctors.

HaveFaith you mentioned that pain from chest to back?~and shoulder?  That is a tough one.  The problem here is that we tend to focus on the reason you are here, what you are currently seeing your Dr. for. The Heart Problem.  It could be from many things, including the pericarditis, or  esophageal irritation, gall bladder, etc.  Have you ever been diagnosed with another disease like Lupus, or Scleroderma?  That can alter things a bit...

 

What I can tell you is that chest pain under the sternum (the Breast bone) in Percarditis is generally from the inflamed pericardium rubbing against the heart.  It may increase while you lie down, or you can have SOB (shortness of breath) from the pain, a dry cough, fever, chills or weakness can be present.

 

When you lean forward does it seem to relieve the pain?

 

Constrictive Pericarditis may cause swelling of lower extremities, or your abdomen, along with a bulging of the neck veins.  (This may help to explain your enlarged abd. and legs.)

 

When you have this chest pain you should refrain from any heavy physical activity as well.

 

I still think with all this info. other things should be ruled out as well, so don't give up!!  We're behind you all the way!!

 

If there is anything else that I can help with, please be sure to ask!

 

Teri

Thank you both for your concern and willingness to help.  I was told that I probably have Scleroderma because of severe Raynaud's, positive ANA, arthritis in the hips and shoulder, thyroid, malar rash, etc  Not to mention, whatever is wrong was triggered by surgery-a hysterectomy.  Surgery can be a trigger for connective tissue disorders.  It is still undecided which connective tissue disease I have but I'd say it's not Scleroderma seeing as a year has passed and I seem to fit more with Lupus.  The "heart problem" is also undecided.  It seems that they rule out everything.  They see that I have some abnormalities but not enough information to give them an answer.  They have left me now with "we don't know" and you may just have to learn how to cope that the connective tissue disorder may just have done this damage and we can't do aNYTHING ABOUT IT.  mY PROBLEM IS THIS COMES FROM THE SAME PEOPLE(SORRY HIT CAPS LOCK)  that were ready to give me a diagnosis of restrictive cardiomyopathy(which is fatal) and then when that was ruled out said it was probably constrictive pericarditis and that didn't show up so now they've given up.  I feel something is wrong that does fit the constrictive pericarditis. I wonder if it was too early on to actually show up.   When all of this started, I had the pains that started in my chest and went through to my back or right shoulder blade just like I've been having now.  It's very painful.  Only at the time they thought I had Scleroderma so they blamed it on GERD(Scleroderma does severe damage to your esophagus).  But then later saw that there really wasn't much going on with my esophagus at all.  My hands and feet, legs are swollen.  My stomach feels bloated all the time but I don't know if that is from "delayed gastric emptying" another connective tissue disorder problem.  My chest feels as if someone steps on it at times worse when I get the chest pains like lately.  Yes, sitting forward relieves it.  My shortness of breath is whenever I do anything even walk across the room to quick and gets real bad after I eat too.  I also cannot lay back at all or I can't breathe.  I'm thin and only 28 so there is no reason for me to be out of breath.  I have tried steroids.  If they help, it's only temporary.  Perhaps, I'm just holding on to constrictive pericarditis because ther's some kind of a fix.  But it has always seemed to be the only thing that explains my symptoms.  I really think whatever it is will show up eventually.  There's no way my breathing can be this bad forever and not have it show up.  I don't know how to be patient especially when I'm in an active flare up phase.  It's hard not to think about something when it causes so much discomfort and worry.  Good Luck to all of you with your surgeries and congratulations for overcoming suich an ordeal to the rest of you.  I guess I'll take my own advice and-have faith.

Have Faith...

Your story sounds so familiar that my heart is breaking for you.  I too went for over a year of "we don't know"...ruling out this and that..."let's check again in 6 months" etc.  I was afraid of losing another year just for the sake of ruling out!  I decided to go for a second opinion and went to Mayo Clinic.  My MD there took one look at me and had it figured out in 10 minutes.  They did a specialized echo with a nose clip that measures right sided heart pressure in conjuction to breathing.  That, plus the fact that you could see my pulse up by my ear, plus the CT...was enough.  Do you have a visible pulse on the right side of your neck?  That is a "hallmark sign" of constrictive pericarditis.  I too had "flare-ups", that's exactly what I called them.  I also had terrible shortness of breath and bone-aching fatigue just from going up the stairs.  Anyway, the best thing I ever did was go to Mayo.  They do more pericardectomies there than anywhere they said.  The trouble with connective tissue disease, if it's definitive, is that surgery doesn't always fix the symptoms.  But from what I understand, not removing the lining can lead to long term problems for your heart and liver.  I also had swelling in my legs and abdomen...it's from fluid being backed up as your heart can't beat.  Sometimes I looked 8 months pregnant!  It was awful.  These symptoms are all now gone 12 weeks after surgery.  Sounds like you need a second opinion.  If you are having these symptoms, then it is bad enough to see in the right testing.  Where do you live again?  Is there heart specialists near by?  I could give you the name of my cardiologist that your MD could call or look up research etc if that would help.  He was great.  Let me know.  Hope you find relief soon.  Nan

Wishing you the best Have Faith and I think Nan2's advise is excellent!  Go for a 2nd opinion!  God Bless and hope they get to the bottom of this soon!  Hugs, Pat

I don't know where the Mayo Clinic is.  Someone at my husbands work told him to take me there.  I've gone to Mass General.  Around here no one will even see you if you've seen them.  They are considered the all-knowing. 

I'm going to have to do something.  I can't settle for their sit and weight for the bomb to drop approach.  I'm starting to drop weight again.  I lost 30lbs when this started and had severe nausea.  The nausea is back and chronic is the word.  It's been bothering me ever since the chest pain started again but now it's real bad.  I've lost 5lbs in two days and can barely see straight.  Losing the weight was my favorite symptom(HaHa) but it was also the one that made them really take notice.  And this time I don't have any pounds to spare.  I'm definitely having a flare-up.  My primary care is being replaced in two weeks.  Maybe, this will be a good thing for me.  Thank you so much for talking with me.

NAN, and everyone who replied...GOD BLESS YOU!!!

I have been like a puppy chasing my tail for so long; and if I told you the list of doctor's I have been too for this you would be amazed...so many ended up looking at my MRI's and ended up calling in everyone in the office, and looking at me like I was a freak of nature.  I had one doctor tell me, well darlin, I have never done one of these, but we can give it a try; and if I need, I will just roll out the ole heart lung machine..needless to say, I bolted out of there...

I searched the first year I was diagnosed to find someone with this and found one lady who's husband had gone though it...his surgery WAS NOT SUCCESSFUL, and the surgeon bailed after an hour in surgery.  The doctor did not come in and see him again, and sent him home, he was so traumatized, that he would NOT even go back to any doctor, his wife continued to communicate with me, and finally got him to go to another doctor, who said he NOW needed a heart transplant.  HE is in the last stages of congestive heart failure, and not doing well.  SO, only hearing that experience was a bit upsetting for me, along with many doctor's telling me that the mortality rate is high, and they did not know or would tell me how I would do.  I spoke with Dr. Lytle last week; and they said that the weight of the calcification has caved in the right ventricle, and that they are not sure how the heart muscle underneath will react, and that I may need to go on a heart pump until it recovers, and if it doesn't, then, I will need to go directly on a heart transplant list.

Going in to the unknown has been so scary for me, and unlike all of you, I seen a LOT of BAD doctor's before I finally decided to go to MAYO (Rochester, saw Dr. Gorden Danielson) and CLEVELAND (Dr. Alan Klein, a pericardial expert, and Dr. Bruce Lytle, the cardiothorasic surgeon).  ALtho, they still NOT tell me the stats on success or failure on the surgery.  CEDAR SINAI did, they had only done four of them, and they said two died, BUT, said everyones case is different.  I suffer from JUGULAR VEIN DISTENTION...ASCITES...major swelling of the abdomen...I can be fine, and within ten minutes, I look like I am six to seven months pregnant...I feel like I am suffocating...I have horrible chest pains, and they have been on high doses of morphine, which I try my best to not take.  I am in and out of atrial fib all the time, and my mitral valve and tri-cuspid valve leak moderately, and I have bi-atrial enlargement..........and basically my whole heart is enlarged.

Dr. Lytle had spoke of going under my left breast rather than down the center of my chest, but a local cardiothorasic surgeon just recently told me that would NOT be a good idea....so I am perplexed.

I am so thankful to have found this site, and am AMAZED at the positive stories here, and you have all given me such HOPE, when, I really felt like all hope was lost.  I have tried very hard to remain positive, but, have written journals to my son's, and have had a hard time picking a SURGERY DATE.  I know if I stay home, my chances of dying are not great, but, going into surgery, there is a chance I won't come home, so that has weighted heavily.  My doctors have NOW told me that this is LIFESAVING SURGERY for me...BUT, still say the mortality rate is high with someone with SEVERE CALCIFICATION, and that if I had been diagnosed early in the diease I would have been better off.  I had a cardiac catherization at Cedar Sinai Medical Center, where they confirmed that I was indeed constricted, and that the pericardium was adhered to the heart, with NO fluid between, and that it would be a 12 to 18 hour surgery to slowly chisel away at the "cement", he said it can produce a HOLE in my heart, and that would cause me to bleed out....one of the major complications.

Anyone who has been diagnosed with constrictive pericarditis, I would LOVE to hear from, I have felt so alone in this disease, and felt like a freak of nature with the CREEPING CRUD on my heart....

Have you all had chest pains and atrial fib?  DO you all know how thick your calcification was?  When i was first diagnosed three years ago, I was at 12mm, then the next year I went to Cleveland it was at 14mm, and now they believe it to be between 16 to 18mm, they believe it is increasing at 2mm's or more a year.  Do you all suffer from the ascites (stomach swelling) and do you take directics to relieve it?  They told me everytime I swell, it does damage to my liver and kidneys.  AS I stated earlier, they have written three newspaper articles about me in my local paper, I live In Las Vegas, and they are traveling with me to Cleveland for the surgery, they spoke to other cardiothorasic surgeons, and this is a quote I cut and pasted from one surgeon who wrote about the surgery:

"

"Cathy is in the moderate range now, but if she continues to wait for surgery, it may be harder to scrape off," Klein said. "If she wanted to wait six months, it probably wouldn't change much; but then again, in one year, the calcification on her heart grew 2 millimeters more."

Most of Brown's heart is now covered with a 12 millimeter thick coating of the substance. Klein believes her surgery should be a success. The caveat, though, is that it's difficult to tell how serious the calcification really is until she's opened up.

"If the calcium has been there for a long time, like perhaps in Cathy's case, it can actually grow into the muscle of the heart, making it more difficult to remove," he said.

Appleton said the heart can get "really beat up" in the operating room.

"It doesn't just pop off like the shell off a nut," he said. "You have to take a scalpel and separate the calcification from the heart muscle. The surgery is really quite dramatic."

WELL, I have taken up more than my fair share of space here....God bless you all; and you all have been so BRAVE, the ones that have gone through surgery, I am amazed at your stories.  Thank you for your words of encouragement and hope.  Catherine....

Thank you everyone for all your wonderful responses here!!  I know that you've helped out more than one person here by telling your stories, and I hope that anyone else that has these problems will come forward and tell us of their experiences!

 

Much good luck to all of you-You Rock!!  Teri

Hi there,

I do not understand the word "tiote".

In NZ we have a public health system, we do need insurance or have to pay anything for treatment. But you can not choose the surgeon who is going to do the operation. Any way I do not really understand how people choose a surgeon, probably by word of mounth. In NZ if doctor performs poorly his or her contract is terminated or has to work under very close supervision. There are private hospitals , but they do not anything complicated and they do not have intensive care facilities.

henk

NZ

Hi Teri,

You are right about the low blood pressure. Thank you for the time you take to read all the posts and jump in with a thoughtful reply!!!

It is very important to get immediate help if you suspect that you could have a constriction.

Keep well

henk

NZ

Storri...

I am really thinking of you...I totally hear you on the journal to the kids...worrying about mortality etc. Tamponade is fatal...pay attention to that. My surgeon at Mayo is Harzell V. Schaff...look him up on a search...he has written a lot on the topic. I also had acites...JVD (totally gone now...my neck is like 3 inches thinner!)..and distention and feelings of being choked.

My advice would be not to wait until June...Mayo does 60 of these a year...ask how many your hospital does a year. They are not that common, so experience is important.

My thickness was only 4-6mm...my lung was adhered to my heart. I did have to go on bypass during surgery...But as henk says, they don't really know until they open up and look there. I would also recommend the sternotomy vs the under the breast...from what I learned...the opening of the chest is the least risky part of the procedure...and recovery is no picnic...but I honestly think my first C-section was worse :) Knowledge is power...so ask away...don't be afraid to ask your MD's specific things...how many of these have you done? When do you think I should have surgery? etc....

I will keep checking the site...hang in there. You'll make the right decision for you...it never depends on just one factor, I know.

Nan

Thank you all so much for your replies....tiote...SHOULD have been DATE!
My cursor on my computer has been jumping around, and I have no clue how date turned into tiote...lol..
ANYWAY....I was asking how do you decide on a date for surgery!
Thanks for the education on cardiac tamponade, that was a new one, and I had not heard my doctor's speak of that before.
I can't have surgery sooner than June.  My surgeon is going out of town the three weeks out of April, and he is booked solid for May.  I have to believe after having this for so many years, that another two months would matter much.  I HOPE not..!
I have trouble sleeping; and this seems to consume my mind.  I find myself looking at things and wondering if it will be the last time I see it.  I have never feared death before, but this surgery does haunt me.
The strange part is how I was diagnosed.  I started having these weird sensations before going to sleep.  I honestly thought they were mini strokes, because right before falling asleep, I would feel this rocking sensation, and I would try to open my eyes, and couldn't, I felt almost paralysised, and I would feel this lifiting sensation, like I was leaving my body.  I went to a cardiogist, who said I was suffering from a condition called, "sleep paralysis".  I was so thankful that it had a name, because I thought I was losing my mind; and was embarrased to even tell him, thinking he would think I was nuts.  HE wanted to prescribe high doses of anitdepressants to surpress them, but I declined, I was afraid of them anymore, now that it had a name, and I was not going to die, which is what I felt, when I would feel the lifing out of my body feeling.
I came home and looked it up on the internet, and low and  behold...sleep paralysis is what doctors called "out of body experiences", they do not want to acknowledge them, but since so many patients have these symptoms, they have too.  At any rate, he called me the next day; and told  me he wanted me to have a chest xray and Cat Scan....and that is when we found out I had constrictive pericarditis.  I have not had the sleeping paralysis since, and what I found bizarre, is that is what led me to the doctor and the diagnoses, which was a strange way to find out.  

At any rate, I know I need to have this done, and I will not back out now.  I realize how serious the tamponade is...and especially the right ventricle caving in.

Did your doctor 's tell you, that if your heart was damaged underneath the calcification, you would need to go on a heart pump?

They have told me that, and said I would be on that until my heart either started pumping efficiently, or, I would have to go to a heart transplant list.

ALSO most important.......has anyone had the calcification grow back?  When I ask the doctors that, they will not give me an answer.  They tell me they do not know.

WOW, after being alone in this for so long, I can't even tell you how much it means to me to get to talk to people that have GONE though this, or KNOW about it even.  I am so thankful I found this site.  I will call Cleveland on Monday, and confirm my surgery date June 6th; if I can have it done sooner, I will, but Lytle is so booked up, I don't thinks it possible.

I will tell you, I would SO MUCH rather go to SAN FRAN...I currently live in Las Vegas, Nevada, and Cleveland is so far away.  DOES anyone know the names of the cardiothorasic surgeon there that has the experience.  I would LOVE to talk to them.

as ever,

Cathy