HealingWell
Search Close Search
☰

I Want to Hear Your Pericardiectomy Story

Support Forums
>
Heart & Cardiovascular Disease
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/19/2012 8:46 AM (GMT 0)
hi leo89
i am sorry you have this condition or possible , and yes it is scary , very! i hope you dont but i do hope they get to the bottom of it soon, i know when we were told about my husbands condition i wanted to scream and still have those days, for some reason this is one of many medical problems that can be head scratching. my husband has had mri, eco, chest x ray, but with him it started with blood work, bnp, brain neuropathic peptide, this tells them what level of hormone your body puts off due to stress on the heart, my husbands was 444, on his first one that took him to the other test, along with that your liver needs checked, along with kidneys, these get stressed with heart issues. his last ones were at 154, normal is 0 to 125, they also sent him to infectious disease docs to find the cause, non was found. may i ask where you live? usa? and what part, i ask since we are in missouri we willl have to travel to mayo or cleveland for the surgery, not all hospitals can do this surgery. we were told that the heart cath was needed, to get the inner pressure, i read this is standard for this condition. the heart cath can tell how many gallon of blood your heart is able to push per min. normal resting is, 150 gallons per min, active is, 300 gallon per min. i understand there are more measurement they take,we were told this is used as a base line to measure progression of the disease. reading your symptoms you do have the common ones for this condition. my hubby has the late condition of this, constrictive pericarditis, only sure is surgery.... for now its a waiting game till he progesses to later class of the disease. he seems to be advancing quickly, was told end of august and now he is worse, it seems about every 2 to 3 weeks we move closer. he now has chest pressure, winded, fluid/edema. did they tell you that you had heart failure? its not really heart failure but a symptom of the contriction from the pericardium. we were told to lower sodium and fluids to 50 ozs, other then that not alot, now i do know now to take motrin if you have heart failure symptoms its makes it worse.... as in how you feel, for us its been a struggle for balance and stability, i awalys worry if its something we are doing wrong or if its progression, or both. if i am unclear on anything just ask, i dont mind, so please ask, i do find myslf on the phone with the docs on a bi weekly sched. i hope i amswerd some of your qustions of not just reply back...... can never have to much info..... great to hear from you, and look forward to more post....... i personaly got more from this forum then any other place.... i dont feel alone....which is worth ... priceless.... thanks ... lisa
Posted 10/23/2012 4:52 PM (GMT 0)
hi leo ,
sorry your not feeling well, this is scary stuff, it was for us, but his is advanced, (constrictive) most of the text they do is to confirm the pericarditis, the heart cath tells them there is no blockage as a 2nd issue along with thy use this at times for a base line to know when to do the surgery, most of what i can tell the surgery is done when the person have severe symptoms, it is a high risk surgery. the MRI I was told was the best test or a ct scan, my husband is on low sodium diet and restricted fluids to 50 ozs a day, he is to take water pills as needed with over 3 lbs of weight gain, we did have some issues when he caught a virus , he took motrin,this caused him to swell more, retain fluid, so that took a few days to get that back on track..... the doctors told my husband to do what ever he wanted.... the symptoms would stop him, if it was to much. i do wish he had said not to take motrin... lol, but after we talked to him, he said you can take it, 1 or 2 now and then, not every 4 hours..llol, well with fever, most would..... so let me ask... are they saying pericarditis or constrictive? pericarditis is curable in most cases with out surgery.... keep me posted... oh and btw.. i posted to you days ago, not sure why its not here.. hmmm..
Posted 11/2/2012 12:51 AM (GMT 0)

To rockchick63, Trevor, and anyone else trying to navigate the complications of constrictive pericarditis and when to have surgery:

When I developed constrictive pericarditis at age 47, I did a lot of research into the disease, prognosis, and surgical options.  Last year at age 48, I had a pericardiectomy.  The following is only one man's opinion.  I am not a medical doctor, but I've read a lot of research and spoken with many doctors and surgeons, so please at least consider my advice.

If constrictive pericarditis is diagnosed very soon after the initial symptoms appear, there's a chance that it can be treated by anti-inflammatory medications, but this works successfully for fewer than one person in five.  If the anti-inflammatories don't work within 3 or so months, the only possible cure is surgery.

Don't delay surgery.  The success rate for surgery is much better for people whose constrictive pericarditis has not progressed too far.  Furthermore, your heart is being damaged every day that you have constrictive pericarditis.  There is evidence that the myocardium is damaged over time just by being constricted.  It can become fibrotic.  Over time the pericarditis can harm the electrical system of the heart.  The rhythm of the heart may be affected (often A-fib). The heart chambers can change size and shape, and be damaged just by being constricted. And other internal organs can be harmed as well.  Most people with constrictive pericarditis develop an enlarged liver and spleen (though they can usually recover following successful treatment).  Blood flow issues can affect the kidneys.  It's a bad overall situation.

The good news is that there is at least the potential for a complete cure through surgery, and the success rate has been improving in recent years.  The published mortality rate for the surgery is about 6-15%, which is very scary.  However, by going with one of the major heart centers that deals with this kind of surgery, and a surgeon that does lots of these, you can improve the chances beyond that.  My surgeon thought that in my particular case, the mortality risk would be closer to 2% - which scared me far less.

My local cardiologist suggested that there would be little harm with waiting for surgery, but after reading the research literature, I think that his information is out-dated.  Yes, there are risks in having surgery, but my quality of life was not good with all the heart failure symptoms, there was long-term damage that might be occuring to my heart, and the surgical results might be better if the operation were to be performed sooner.

I took the initiative to send my records to cardiologists at both Mayo and the Cleveland Clinic.  At Mayo, an expert in constrictive pericarditis is Dr. Jae Oh.  At Cleveland Clinic, the local expert is Dr. Allan Klein.  These two hospitals perform more pericardiectomies than any others in the country, and Drs. Oh and Klein have published many papers about the disease.  I don't think that you can go wrong with either of these two doctors and hospitals.  In the end, I had my surgery performed by Dr. Hartzell Schaff, who does many of these surgeries at the Mayo Clinic, with Dr. Oh as my Mayo cardiologist.  My recent cardiac tests show absolutely no signs of constriction.  My heart failure symptoms have disappeared.  My blood tests and recent ultrasounds show that my liver, spleen, and kidneys have returned to normal.

I highly suggest that you contact Dr. Oh or Dr. Klein now, even if your local cardiologist thinks that you should be near death before opting for surgery.  It's your life, so take control of it.  Make sure to have the pericardiectomy done by a surgeon that does many each year, at a hospital known for specializing in this procedure.  If your cardiologist suggests that you wait until late heart failure for the procedure, I think they are giving you bad advice.  Take the initiative to speak to a cardiologist and surgeon that specialize in constrictive pericarditis, and do it now!

Best of luck,

RedBear

 

Posted 11/2/2012 8:07 AM (GMT 0)
hi redbear, great hearing from you and ty for your help here, glad you are doing well and this horrid thing is behind you. i have made some headway but not without a struggle, trying to get a surgical opinon is not easy, not sure what im doing wrong but we seem to have to go through the ins company to get permission if we want them to cover it.... frustrating. so i have to look into this more as well, but this week was not bad, his symtoms seem to have leveled out... but, i am trying to figure out if my husband has mild or advanced, constrictive, he has heart failure symptoms, edma, ect, his is with calcium, 8mm thick, cause unknown, he has always been sleepy so i cant judge this one, but more so now, he cant run now, but seems to tollerate most things ok, if he lifts things i see him getting winded too, his labs all look good but bnp a lil high, kidneys and liver all donig well, they did not try him on anti drugs, docs said it would not work its to late, i wanted them to try.. but i know he cant have motrin, that makes heart failure worse.... edema, which is odd, since most on here are treated with that but he dont take water pills often, so it may be a doc preference. he does have chest pressure, on and off, through out a day , what kind of symptoms did you have before surgery? i know for him its mainly chest pressure and odd small things like if he eats to much he gets pressure in his chest, he does get winded time to time but not bad most days, he sleeps alot but still works, for the most part i cant tell anything is wrong other then edema, but he never complains i have to ask and hope he tells me, he is talking more then he first did which is good, other then this he has always been healthy and active, i did notice his activity levels dropping, was not sure why. i must say this is odd stuff, his doc tells him, he only has 60% chance of relief from surgery, which is old data... like you said.but if he sees something diff on his scans he (doc) is not telling us that part, i just know he has calcium and 8 mm thick but his doc here wants him to wait it out i like you think this is not a wise choice, i see you waited a year? rt? did yours progress? or just thgouht it was best? love to hear more, cant know to much on this subject.... :) thanks for your help, till then take care.... lisa....
Posted 11/2/2012 5:24 PM (GMT 0)
Hi rockchick63,

The first symptoms that I noticed were a feeling fullness in my chest and stomach, early fatigue while exercising, and pressure in my head when bending over.  My doctor noticed that some of my liver enzymes were increasing beyond normal range, and my jugular vein became visible.  Soon after, I started having some edema in my ankles, and my gut started expanding (ascites).  I would feel very full whenever I ate.  I started hearing some rattling in my breath while lying down.  Over the course of the next year, the ascites got worse and I became winded a lot more quickly.  Just before surgery, I started to lose muscle - I think that the pericarditis was starting to impact my digestion.

My constrictive pericarditis was likely caused by earlier cardiac surgery.  I was born with a bad aortic valve, and had surgery to fix this about 6-9 months before the first symptoms of pericarditis.  I tried anti-inflammatories for three months with no luck.  You mention bnp - mine was slightly elevated at 134 when first diagnosed, and this rose to 204 six months later.  My right atrial pressure was more than 20, and although the doctor was noticing some bad changes in my echocardiogram, I still needed to push him to let me expore surgical options.

I was becoming increasingly miserable.  Previously I had been very physically active.  I was playing with my kids less and less, and not living the life that I wanted to live. 

My pericardium was not calcified, and it was only a little thickened, but it was still hurting me and my heart - it turns out that people can still have severe constrictive pericarditis with no thickening whatsover! 

I started taking daily diuretics soon after the initial diagnosis, but reducing sodium made an even bigger difference for me.  Even post-surgery, I feel a lot better when I avoid sodium.

There are a couple of reasons why I waited a year for surgery.  First, I was hoping that anti-inflammatories would solve my problem.  Then my local cardiologist discouraged me from having surgery.  It wasn't until my symptoms got worse and I read a couple of research papers that pointed to the benefits of having surgery earlier that I really pushed the issue and made it happen.

Health insurance can be a big, big hassle.  You should try to get your husband pre-approved for all of the expensive procedures.  I'd recommend contacting a Mayo or Cleveland Clinic cardiologist, find out what tests they want to perform (MRI, x-ray, Cat, Echo?), and then work with the hospital in advance to make sure that insurance will pay for it.  Even though I had a pretty complete policy, I spent 6 months working on getting insurance to pay for my heart cath test because the hospital and insurance companies used different coding schemes....sigh.

It can take some time to improve after surgery.  One doctor told me that I had been sick for a year, and it might take a year for my body to adjust back to normal.  It was only after seeing last week's echocardiogram results, which were suprisingly normal, that I felt that I really got through it all.  Best of luck to you and your husband.  Don't hesitate to ask any more questions.  I know how much of an ordeal this is.

RedBear

 

Posted 11/2/2012 7:52 PM (GMT 0)
hi redbear,
hmm alot the same on him as with you.... he has had edema in both legs for appox. 6 years, we thought along with docs this was due to leg injury, now idk. but he tells me he has what feels like a balloon blowing up at times in his chest then going back down, on and off... with eating and so on..... he is always tired so i am not sure on this one.. i always thought it was due to his activity levels, when he is up and moving he was a non stop busy man doing heavy duty things but now i dont see this... he does have pressure in his head if he bends over ... and his juglar viens are same as yours... they tell me he has some fluid n stomach too, this i cant see... he has a odd cough.... when he inhales or talks alot, i am not sure if this is related. he never smoked. all his labs look good, his first bnp was 444, this is what made them look, he has had... mri, eco and chest x ray and lots of labs and heart cath... i dont know his heart cath numbers but they did say its normal for what he has.... @@.. his bnp went from 444 to 197 to 154... its 154 as of a month ago. this was after he reduced sodium to less then 2000 and liquids no more then 50 ozs DAY, i have read things that say the calcium dont matter.... i find this hard to believe but.. im not a doctor, i know they can see the edge of the pericardium on a mri and see (most of the time) if there is any damamge to the myocardium, i heard the words, fibrous and elastic like, but reading all things on this condition i think its normal for most to have this, its what turns it constrictive, the key is that it dont go to the heart it self.... but for us my fear is how long he has had this, i have tried to get him to think on when he felt different, he cant pin point it... if the leg swelling was a sign then its been a while, and he may just have progressed more slowly, this idk.... i still think there is a under lying cause for his, that no one has located and since there are so few of these cases no research goes here.... other then cleveland and mayo i think still does some... his cardio here wants him to go to barnes, st louis, sure its alot closer but closer is not what im looking for, like you, we want the top, i know mayo is know for more aggressive cases, like the calcium and they attempt a full removal from what i read.. the back as well.... of the pericardium, did they remove the back of yours? i know more risk with the back side, oh and on the bnp, this is what i am concerned with.... most things i read tells that most with constrictive pericarditis dont have high bnp like his... 444..... so this is why i worry on the exterior of his heart, his heart cath showed his heart was not restricted. he does have some regurgitaion of one valve due to constrition.. cant remember what one... i remember the day of his heart cath, the one doc looked at him and said oh your very healthy, your a ways out for surgery , only the really sick get surgery, i wanted to choke him, lol, i really did, i am thinking to myself, so we make the man sick as hell before he can have surgery which will only cause more issues later or perm, damage. i am worried to have him have it and not to have it. what a place to be in...... so you have had 2 of these heart surgeries wow, my son was born with a bi cuspid arortic heart valve, so far so good, but he is only 18.... get back to me... thanks, take care... lisa
Posted 11/3/2012 11:54 PM (GMT 0)
hi redbear, real quick add to my last post, today seemed ok, he wanted to go to the woods ( he loves to hunt) dear season is coming up soon, he wanted to check his abilities in the woods, as you know or can imagine the woods.. hills, going up and down and not even ground can e challenging, well he is still now home, but i did talk to him on the phone, he said he did fine while walking but after it seemed to get worse, as i was talking to him the cough came back that had been calm for few days, along with he did seem winded and was even having trouble talking a complete sentence without taking a special breath to complete it , if this makes since. i know in march of this year he was able to go to the woods and cut wood and split it and load it, he loves to cut fire wood, i guess this is a outlet for him and its great exercise, as he has always done this yearly, i dont think he will be able to this year. i guess i still try to figure out what happened to make this problem and just cant come up with anything.... the doctors here tell me it dont matter the damage is done , i understand that but still would like to know. :) i hope you are doing well and living life as you once knew it, its a scary thought to think things may never be the same as even last year, and most of all that one can live a long normal life. hope to hear from you soon... lisa
Posted 11/4/2012 5:39 PM (GMT 0)
Hi Redbear,

Thanks for the sharing your experience with this awful condition. I'm so glad to hear you had a successful outcome at the Mayo Clinic. I'm heading out there in a couple of weeks for surgery with Dr. Joseph Dearani.

Do you have an email or instant messenger account where I could chat with you in greater detail about your case?
Posted 11/4/2012 5:58 PM (GMT 0)
Hi Lisa,

At Mayo, I had what they call a "total pericardiectomy". They removed as much pericardium as they could reasonably reach, even on the back of the heart. My understanding is that even with a total pericardiecomy, the surgeons still have to leave some - maybe 10-15%, but they said that shouldn't impact the heart. There is research out of Mayo that total pericardiectomies have the best outcome - and their choice to do a total pericardiectomy was one of the reasons that I decided to have my surgery done there.

I think that if the pericardium is calcified, it can be more difficult to remove. If it adheres too strongly to the heart, the surgeons remove strips of pericardium to allow the heart to move well again.

Your husband's cough / breathing problem is scary. I wonder if he has developed pleural effusion as a result of the pericarditis, if the ascites is impacting his breathing, or if the pericardium is also adhering to his diaphragm. After about a year of symptoms, I started having difficulty taking a full breath, and my respiratory symptoms were another motivator for surgery.

I'm sure that there is really a cause for constrictive pericarditis in the so-called "idiopathic cases". Maybe your husband caught some kind of virus / flu that caused it. The good news for you and your husband is that the idiopathic cases have the best results after pericardiectomies. You've probably read this article already, but if not, you should definitely read: http://content.onlinejacc.org/article.aspx?articleid=1135537 . At some level it's reassuring for idiopathic cases, but some of the long-term survivability numbers are at the same time scary.

Another article that discusses survivability after pericardiectomy is this one: http://circ.ahajournals.org/content/100/13/1380.full . It says that age and NYHA class are two of the three big determiners of long-term survivability. This suggests that your husband would want to have the surgery sooner rather than later. It sounds to me like your husband might be NYHA class 2 or 3. What do you think?

I agree with you - I think it would be crazy to choose a hospital just because it is local. This is your husband's life after all! I've heard that some surgeons want to perform the procedure just because it is rare and they may not have had a chance to do it before. I don't understand why someone would choose such a surgeon.

It's really disturbing that different cardiologists have radically different guidelines for when to suggest surgery. It's as though some are unfamiliar with the latest research.

One of the big motivators for me was that I was feeling lousy, and I knew that I was going to feel progressively worse without surgery. Another motivator was the research that, at least to me, suggested early surgery had better long-term results.

It's great that your husband is getting to spend some time in the outdoors. Maybe that will allow him to better assess how he's doing, and give him some time to reflect on how he wants to proceed. It is difficult to figure things out!

RedBear

Post Edited (RedBear) : 11/4/2012 11:02:17 AM (GMT-7)

Posted 11/4/2012 7:00 PM (GMT 0)
hi redbear, i had seen that mayo was the most aggressive on total pericardectomy , this is why i feel more comfortable with them, i am not sure how much calcium he has, i know this causes more concern for the surgeon, but worse is the fibrous tissue, i am not sure how much of this he has or the severity of it. i do know this word was used by the local cardio via mri scan, but i believe all pts have that with constrictive, unless i miss understood him. last week docs did another chest x ray due to the cough, nothing was seen that was not there, lungs clear... i do know he seems to have more issues with the diaphragm as in, hic ups, pressure if drinks to fast or eating .. seems to burp a lot, things feel like they get caught in his esophugus alot as well, his stomach dont look any larger then it ever did, he has a small beer belly but always has.. maybe smaller :) , i have no clue what class he is in, i cant make since of the graphs to see, based on his numbers it looks like class 3, going off a bnp, at 444, with lower stuff, salt and fluids he drops to a 1, so idk, but with out id say class 3, which to me is already past surgery time.... bad thing is i have a husband that is very hard headed and waits way past the line of safety, i know i cant change this part, i do put the pressure on him to get this over with then wonder if i am doing the rt thing, lol, i want this to be his choice but he dont rread nothing, look nothing up, just goes with what is told, this is why im working on mayo sooner the better, so they can tell him, not me. :) you and i are on the same page but i am not the pt. what was your surgery like? that eve and following days? where you on a bypass machine during? and where you left on a vent post for a time? i know each case is different... but still like to know, i dont do well watching things like this, its hard, sometimes harder then being the pt..back to the class of hf , he has had the edema for some time now, in the legs.. years.... like 5 , so not sure why but he does have vericous veins too in one leg, (sp) this all happened after the injury to the leg. his cardio came from cleveland this is why i get frustrated with the doc, he came from there he should know the sooner the better, but instead he talks of.... this perfect window, not to soon and not to late... to me from what i read , he is there now....i may call this week to get cath numbers... dont know what those will tell me but i will get them and see when this tells me. he keeps telling me he wants to wait till may for surgery... i thiink he knows he wont be able to work for while and thinking summer will be better to sit around :) i guess i dont look at it that way.... but :) good hearing from you and hope your day is good.... :) thanks , lisa
Posted 11/5/2012 2:48 PM (GMT 0)
Hi Lisa,

After I made the decision to have surgery, I sent my medical records to the constrictive pericarditis cardiology specialists at Mayo and Cleveland Clinic (Drs. Oh and Klein), and asked that they review them.  Both doctors thought that I was a good prospect for surgery, so then it was a matter of scheduling additional tests plus surgery.  I live far away from both hospitals, and I only wanted to make a single trip - so I asked that they schedule tests and surgery together.   They will schedule your husband for an additional day or two of tests, followed by surgery if the tests show that is the right approach.    If you live nearer, I suppose you could do this in multiple trips.  I ended up choosing Mayo because my surgeon there did more of these procedures, I liked the aggressive approach of total pericardiectomy, and the scheduling worked better for me.

In the two days before the surgery, I had another echocardiogram, MRI, x-rays, blood tests, and a cath test (the cath was optional).  I then met with my cardiologist (Dr. Oh) who recommended that I go ahead with the surgery, and then immediately met with the surgeon (Dr. Schaff) to review the procedure and what to expect. 

I had a weekend between my last test and surgery - though I think it would be just as good or better to have the surgery done the next day.  The night before the surgery and the morning of the surgery, they had me use a special disinfectant soap to shower with at the hotel.  I also asked for some medicine to calm me and so that I could sleep well.  The day of surgery, I went to the hospital with my wife.  When they took me to surgery, my wife was led to a special waiting room.  They put me on an IV, and the next thing that I knew the surgery was over.

I was very scared of intubation (the breathing tube), so I asked in advance that they try to remove it before I was lucid.  I don't even recall being on the breathing tube.  They decide during the surgery whether or not to use bypass.  They did so on me - I think it allowed them to get more of the pericardium off.

During the next couple of days, I stayed in ICU.  I think that I got out of bed to eat the following day.  There were 4 chest tubes attached to me - two to drain the lung cavity, and two to drain the cardiac cavity.  During the next four days, they noticed a lot of blood draining from the tubes, and eventually decided that I was bleeding internally and needed to be opened up again.  I asked that they call my wife to let her know that I was going into surgery again.  Before I knew it, the re-operation was over.  Apparently, one of the sternal wires had snagged a rib artery when they had closed me up previously.  This is the one thing that disappointed me about the Mayo surgery - that they had to open me up a second time to stop the bleeding, which could have been avoided if they closed me up correctly the first time!  (I don't think this was Dr. Schaff's fault - he did the hard work, and I think one of his assistants closed me up).

The average stay in the hospital for a pericardiectomy is around 10 days.  I stayed about 3 weeks because it took a longer-than-usual amount of time for my lungs to drain.  My wife stayed with me most of the time.  Thoughout my stay, I was on some pretty good pain killers - there was a lot less pain than I expected.  The doctors want the patients to start getting some exercise as soon as possible, so I did lots of circuits around the hospital ward, rolling my IV stand with me. 

The rest of my hospital stay was pretty boring!  I slept a lot, watched a lot of tv, was schooled on how not to use my arms to support any substantial weight until the sternum heals, and ate lots of bland hospital food.  There were additional tests, like x-rays and echocardiograms.  Surgeons and cardiologists stopped by to see me regularly.  Each morning, we looked at how much had drained from my chest tubes, to see if I was ready to come home.  I took longer than most, but physically was ready to come home after three weeks.  Mentally, I was ready to come home quite a bit sooner.

RedBear

 

Posted 11/5/2012 6:54 PM (GMT 0)
redbear,
thank you for sharing your story with me. did the doctors at mayo ever tell you your outcome of what they expected prior to the surgery, if it would give relief in your symptoms, if i am correct the most important one is the heart failure symptoms, rt? also, did you hand select the doctors that looked at your file or was it random on there team of doctors? by reading i take i tthat you selected the two. ?
we live 12 to 15 hours from both places so we are not close either.... barnes is 3 to 4 hours, but i dont feel this is a option since i cant even pull a single thing they did on this surgery and not to be a sexist but its a female doc as well, i have mixed feelings on this. but... my choice in the beginning was mayo, due to they opt for total pericardectomy and they use the old fashion way... via sternum, where cleveland prefers the rib entry and they dont seen to be as aggressive in trying to get most of it, but either place i personally would feel safe :), i know these are the two that are highly noted for this operation. that would be horrible to have to be opened again, but i can see how can happen, and the vent tube, funny you mention it, that is one of my worst fears medically, i have not had a lot of medical surgeries but that is my fear (the vent tube), my father was placed on this 2 times for a lung condition, one time he had coded, the other time he was very awake..... that was horrible to see, so yes i fear i will walk into icu and see him on one, i try to prepare for this as i now its only temp. but its still hard to see one of those, since i know what they mean.. my brother who had a 7 hour long brain surgery was taken off before he got to the unit, but brain surgery is a lot different then heart. and for your wife, i am sure it was all just as hard on her as it was you, i think often what this will be like and wonder who will bring me a IV full of meds to cope:), was your wife alone, meaning you and her only went? i am planning on my sister going with me, she is not real reliable, during my brothers brain surgery and my mothers and fathers illnesses she was never around, so i may not want to count on her to be with me. when i called cleveland for the docs to look at his test /file, i seen where there may be a charge, did they charge you to look? we have ins. but we have hmo, which requires the doc here to request this and since he dont think its time he puts on the stuff, family wants this.... not him.. so, that changes things for ins. but i know cleveland says there will be a fee for the readings..... of his file, but never says how much... thinking of radiology that can be a lot of money... id like to get it all going since his things are not old, MRI, eco, ect, are all with in 3 months old. also... did they have good rates on hotels by mayo? 3 weeks is a long time to stay in a hotel , i am sure this was not cheap. a week would be bad enough...

yes reading your story this will be hard for my hubby, mind you the worst thing he has ever had was the heart cath.. or a broken bone as a child, wisdom teeth pulled when he was much younger.. so yes, he has never had anything really... i remember one time few years back i had to have a minor surgery, still causes panic no matter how simple, lol, but the night before is sheer horror as you sit and think of everything possible, its like writing a horror novel in the OR, lol, i remember him patting my leg and saying it will be ok... lol, which only made me more mad, as you know its not ok.. when you are scared to death.. i reminded him of this day recently, he smiled , know understanding its not ok no matter how big or small... but i wont tell him its ok, since i know its not, there is very little anyone can tell you when you are terrified. hmmm, thinking again on the drip i will be needing for myself.:)

so also i was reading ... you were placed on a bypass machine? wow... those are wild to say the least... i know if they try... taking any of the back of the pericardium they normally have to, in his case i look for this to e used as well, since he has calcium, i know cleveland uses a special tool..... that cuts through the calcium , if i recall so does mayo...... i know the fibrous that is stuck to the heart i believe they move around it.. leaving patches. as you know how ones mind can work over time, i often worry that they will come and tell me something even worse... after the surgery... like... welll his heart has alot of atrophy ect... ive lived it all in my mind. i envy those who have this behind them.... looking forward is nothing but dread.... if you dont mind me asking.. what kind of work do you do, white or blue collar? are you able to work now? and if so how long was you off? he works blue collar, so i dont know what to expect there, i was reading that it takes 6 months for the chest to be strong.. but if he waits much longer i dont know if he can do his job, its a struggle now, he works and sleeps..... period.. its taking a toll on him, i can see it in his eyes, he trys to work over time to afford the trip and ect. that will be will have to make, i tell him not to, but he insist, it seems to me the worse he gets the more he tries to do,not sure if he is testing his body or what, but at times he appears to be his worst problem. also i dont think he will be able to go deer hunting, after this weekend, i think he knows he cant.. but that will be his call, not mine. today when he called me from work on break i could tell that he was winded, and needing more air to talk then normal. he sees a change in himself after he does things, like.....his heart beating harder and longer..... gets winded... when he works some eves it takes couple hours for him to start to breath more normal, not all days only some, the thing that may change this idk??
his weight is the same each am lately , so tht is good. he is 6 ft tall and 207. i know he will lost some of this weight before and during and after thhe surgery. is there a way to get you my number or email , w/o posting it here???????? oh.. how many hours was your surgery? i hear 4 is typical...... and does your chest on the inside feel any different? i look forward to your reply.... thanks :) lisa
Posted 5/27/2013 5:00 AM (GMT 0)
Hey MELJP123

My name is manek, i am also 19 years old, 20 in august. I was diagnosed with pericarditis in end of january 2013, since then my condition has not got any better. i have pretty much felt the same and has gotten worse if anything. i have to stay in hospital on three different occasions and have had to make numerous visits to the ER and to my GP. I have had to take morphine, tramadol, colchicine, prednisone, ibuprofen, paracetamol, codeine and omezol. None of these medications have helped. I have had nearly all types of tests conducted on me and all these keep saying are theyre normal. The doctors keep telling me i have to put up with the pain and it will just go. I attend university in new zealand, but i am originally from London, i was first diagnosed with this while i was visiting family in london january 2013. I continually feel tired, keep clenching my chest in pain, i have not been able to sleep properley for the past 5 months. I am getting quite sick of this and do not know what to do. I am wondering if you are able to chat to me sometime and let me know what happend to you and if there is anything i can do. Your case is the only one that i have found so far that is most similar to mine.
I would appreciate it greatly.
Thanks, Manek
Posted 11/12/2013 3:01 AM (GMT 0)
30 days from today I will start my pericardiectomy story. I have a heart cath scheduled with Dr. Schaff at Mayo Rochester on Dec 11th to confirm test in mid September that supported Constrictive Pericarditis. Pericardiectomy scheduled for Dec. 12th. I am at peace with the actual procedure to be performed because the quality of life right now can be summed up as "Nonactive". No real pain being experience just severe lower extremity edema, pitting, abdominal swelling and shortness of breath and wheezing (asthma for 30 years) with any physical activity. Any deep breath, cough or sneeze causes a tightening sensation or clamping pressure around the heart.

Pericardial thickening was noted to be 7mm. I don't really know where this thickening test result compares to others that have had a pericardiectomy and levels of complexity that may be encountered when stripping the pericardium from the heart with this level of thickness.

We live in Oklahoma and plan on driving, 11 hours, rather than flying. Any feedback from others that may have driven similar differences after being released from hospital. Flying would be total travel time of 9.5 hours due to not living close to local airport.

For an in depth explanation of my journey up until now, I posted a topic "Pericardiectomy and Weight loss" on October 31st in this Forum. I have gained over 100 lbs during this 2 year diagnosis journey.

Thank you in advance for any feedback on experiences with similar thickening of pericardium or traveling experiences post surgery.

Donny
Posted 11/12/2013 9:23 PM (GMT 0)
Donny,

Good Afternoon and welcome to MN - and Mayo Clinic.  I live 45 minutes from Rochester.  I am glad you are feeling at peace with the decision to have the procedure. I pray you are treated well while in Rochester.

Driving makes more sense than dealing with airports when that involves 9 hours of driving. I am assuming you have someone to drive you and be with you here in MN.

Keep us posted and share your story with all of us as we have many people who read the forum that are not members of HealingWell so consider your sharing as a gift to so many others facing the same dx you are.

Gentle Hugs,

Kitt 

 

Posted 11/26/2013 2:34 PM (GMT 0)
It is 15 days until my scheduled heart cath on December 11th and then my scheduled Pericardiectomy on Dec. 12th by Dr. Schaff at St. Mary Hospital in Rochester, MN. It can not get here soon enough. The last 15 days have continued to be difficult with extreme shortness of breath, abdomen distention and lower edema making every day life miserable. Many of my close friends and co-workers have seen me in a full sweat after just walking from my vehicle to my office or into a retail establishment.

I don't know if others have experienced the same thought process I go through when going to the grocery store, Lowe's or some other retail store. That thought process is, "Oh, I hope I can find a parking spot that is close". It is difficult enough to walk through a large store, but walking the length of some of the big box retailer parking lots in cold temperatures just takes your breath away. This is ever more concerning when you have much less breath to give.

Even at home, I find myself maximizing the effort of going from one room to another so I won't have to back track to go get a coat from the closet, bring extra dishes from the media room to the kitchen or carry extra items from inside the house to the garage. In most every decision, I am evaluating how do I accomplish this task my exerting the least amount of energy so I won't have to repeat the same steps twice. These are just a few of the reasons the surgery can't get here soon enough. Oh I long for the day when walking, putting on socks, getting out of a chair again become second nature and not something that takes a full out effort to accomplish.

Donny
Posted 12/14/2013 3:44 AM (GMT 0)
Pericardiectomy was performed yesterday 12/12/13. Dr. Schaff said pericardium was very thick, larger than the 7 mm from original thought. He said it was stuck to the heart in several places but complete removal was a success. He mentioned that the heart immediately came to life after the removal of the pericardium. Surgery was completed around 300 pm and family came to see me in ICU around 600 pm. At 630 am 12/13/13 ICU nurses got me out of bed into a chair. I was feeling great and actually sent my wife and 3 daughters a text message letting them know everything was great. They were amazed i was already up and around. At 10 am I was ready to be moved out of ICU into a separate room. I have had soup, green beans and pork strips to eat today along with dessert of Custer and chocolate ice cream for lunch and dinner. I have walked 3 times today, doing the breathing exercises 10 times an hour and achieving around 1500 ml of inspired volume. Cathiter came out around 230 this afternoon and Lasix was started through IV. They plan to weigh me first thing in the morning so we will get our first look at how weight is adjusting. I am feeling great and as of day 1 post op, very glad I have had this surgery.

Post Edited (D R Johnson) : 12/15/2013 9:28:23 PM (GMT-7)

Posted 12/15/2013 12:05 AM (GMT 0)
Day 2 after pericardiectomy is winding down. It was a day of a little more sleeping as I was tired. I awoke around 530 am got out of bed into the chair. No significant pain today. I am on a 20 mcg pump of fentanyl if needed. Also receiving Tylenol and ultram on a rotating 6 hour basis. The jugular vein port was removed this morning around 10 am after the doctor examined me around 830 am. Doctor said again that the pericardium was extremely thicker than the originally estimated 7mm. In spots it was up to 1 cm. He also said it was obvious this thickening process had been occurring over several years. He mentioned there was one area of calcification but complete removal of the pericardium was achieved and the heart immediately leaped to life after the thickened pericardium was removed. They continue me on Lasix and would like me to lose 6 liters today. This will be about 13 pounds. Yesterday I lost 10 pounds so I think this is very probable. I am continuing to feel very good.

Post Edited (D R Johnson) : 12/14/2013 7:21:35 PM (GMT-7)

Posted 12/16/2013 4:27 AM (GMT 0)
Day 3 after my pericardiectomy saw the two mediastinal tubes removed along with my IV removed. I still have the two pleural tubes that hopefully will be removed tomorrow. I am currently on two 500 mg Tylenol and 1 ultram every rotating 6 hours. I have been in very little pain and feeling wonderful. I went on 5 very long walks today around the cardiovascular floor today with no shortness of breath. I had no idea I would feel this well 3 days after surgery. I am a person that has pessimistic tendencies, so this was definitely not how I expected I would feel. I have a strong faith in God and have had many prayers offered up on my behalf, for which I am grateful. This just continues to comfort me on what an awesome God I serve. Donny
Posted 12/24/2013 1:42 AM (GMT 0)
I was released on 12/17/13 and am now back home after my pericardiectomy by Dr. Hartzell Schaff on 12/12/13. I followed up with my general practitioner today and all scars and drainage holes are healing well. My weight is down 41 pounds in 10 days. I now have ankle bone and muscle definition again in my lower legs and I am already wearing 2 inch smaller waist line jeans. My breathing is incredibly improved. The last three days I have gone to Lowes with my wife shopping and used those opportunities to walk a full circle of the store interior for exercise. Prior to my pericardiectomy, There was no way that was possible. I am so thankful for Mayo Clinic and their ability to diagnose my condition which had been undiagnosed for 18 months. There is no doubt this has giving me new life. I will begin cardiac rehab in a few weeks and can now see hope for getting back into shape that has not been possible over the last few years.
Donny
Posted 1/28/2014 2:44 AM (GMT 0)
D R Johnson, Wow, I am so thankful to see you that went to the Mayo. I'm 29 and was diagnosed with pericardititis. I was told that if I have another flare up that I am looking at going to the Mayo and possibly looking at have a pericardectomy. I heard some not great stuff regarding the Mayo so I'm really doing my research. I have so many questions but just reading what you posted has helped so far. :) Would love to chat more if you would be interested. Thank you!
Posted 1/28/2014 1:32 PM (GMT 0)
CKR,
Glad my posts have helped. It's now about 6 weeks since my surgery. During my 3rd week I experienced a little weight gain of about 10 pounds as the days I did not take my Lasix I would gain and when I did I wouldn't gain. It was like a yo-yo gaining a little more than I would lose. However when I started rehab at week 4, MWF, the weight began to fall off and no more Lasix. I have now completed 3 weeks of rehab. Doing 20 minutes on a treadmill, 20 minutes on an elyptical bicycle and 15 minutes on an arm elyptical. I am now down a total of 50 pounds since my surgery. The legs no longer feel like tree trunks having to be dragged around. I again have ankle bone and calf muscle definition. I get comments daily about how my countenance has totally changed. Some have told me there is life in my eyes again. And I truly believe I have been given new life. My wife and I talk all the time about the unfortunate circumstances where some may never gets diagnosed and continue to struggle for life. I returned to work half days during week 4. I have a desk job with zero lifting or standing requirements. I am now back at work full time when not at rehab. I have no problem trying to answer any questions you may have. I hope you get better.
Donny
Posted 1/29/2014 7:01 PM (GMT 0)
Donny,

Thank you for posting your post op journey and I am glad to read how well you are doing.  You are a great inspiration to many others who find themselves in the same situation you were when this all began.

Sounds like rehab is a blessing for you.  Keep on posting as this is so helpful to us now and will be in the future when people are looking for information on the very same procedure you have had. 

I am glad Minnesota treated you well and I will keep you in my prayers.

Kindly,

Kitt

Posted 3/24/2014 12:14 PM (GMT 0)
Hello everyone! I hope you are all doing well.  I've been reading your stories and wanted to know if anyone here has had any issues since their pericardiectomy?  How much did it help in your lives? 

Thank you all for any responses, take care and have a blessed day!

 

Posted 4/15/2014 7:14 PM (GMT 0)
Hi everyone, it has been really helpful reading everyone's stories knowing your not alone in this. My husband was diagnosed with constrictive pericarditis (7mm in places)in February. They believe it was from mitral valve repair 14 months ago. He has severe shortness of breath with exertion and chest pain. He is lucky that he doesn't have any edema but, does have some jugular distention. He is on 40mg prednisone, 800mg ibuprofen 3xday and 0.6mg colchicine 2xday. He has been on these meds since beginning of February. We have gotten two opinions, one cardiologist says pericardectomy the other one says his inflammatory markers are too high. In March his sedrate was 42 and crp was 123. Now crp is 13 and sedrate 21. Symptoms haven't changed but the cardiologist says numbers are still too high for surgery. My question is, does anyone know their inflammatory numbers before surgery or any information on this topic?
✚ New Topic ✚ Reply
123