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Pericarditis & Pericardiectomy pt. 7

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Posted 1/29/2007 9:53 AM (GMT 0)
Hi everyone here I am back again! My husband went in to theatre on 25th. Was in there 7 hours. Seemed like a year. Surgeon said pericardium was thick and stuck fast. This had only taken 9 months to get like that so thank goodness we didn't wait. He was kept anaesthetied and vented for another 12 hours in case of bleeding when they would take him back to theatre. Came off vent 12 hours later and back in his room a few hours after. Every bit of pericardium has gone and he also had a double by pass. 2 arteries were a bit furred and he has history of fatal MI in his family. It seems he could have lived without it ever being a problem but surgeon said 'I thought I might as well do them while I was in there just in case' Yesterday was day 3 post surgery and he is up and dressed and waliking. Very tired and no rest in hospital is there? He has just rung very down as they have begun a betablocker today because his heart rate is still as high as pre-op around 100 bpm. He said they told him might not be for ever. He is just not a tablet taker and thought he would skip out and never need to see a Dr again. Oh forgot - drains were in longer than bypass etc because of bleeding so in until over 48hrs later. Also he has done so well because he was otherwise fit, never smoked etc. Some poeple having cardiac surgery were on vent longer and in ICU longer. Will keep posting but thankyou so much all of you for putting your tale on to encourage others. My nephew is a computer guy and I'm going to get him to set me a site up in UK/ Surgeon took pics during op so if we get copies will put them on. He is HOPING to be home Weds or Thurs. Re recurring pericarditis there is a man in America put film of his op on and he had had it years previosly and then settled. If I can find it I will post address. Bye. XX

Posted 1/29/2007 12:04 PM (GMT 0)
Excellent news Sherwood. Wish him my best. Glad things went well. Nyonuk.

Posted 1/31/2007 5:32 PM (GMT 0)
He's home!! Yesterday am he had to walk up and down stairs to prove he could and was allowed home that afternoon. Surgeon said was amazing recovery. He is very sore, they only gave him paracetamol so I have bought some co-codamol, has lost more weight and is falling asleep regularly. Is anaemic because of blood loss but hospital not keen to transfuse as he is considered young and healthy and will soon make up lost blood. Can't believe this time last week we were going in SO scared. Nyonuk thanks for your good wishes. Aren't you waiting for this to be done in London? Any news?

Posted 1/31/2007 5:47 PM (GMT 0)
Hi Sherwood;

Excellent news. Both of you need to get plenty of rest now I guess. Probably one of the toughest weeks you'll ever go through! Bet your glad to be out the other side. I'm still waiting. Latest is that they want to do yet another echo at GOSH to double check / confirm the diagnosis then they'll put me forward for the surgery. I've a consultation on the 7th (next week) but don't expect to hear much now until they've done the echo. To be honest, I'm not feeling too bad at the mo, now the fluid has mostly gone (Close on 3 stones worth!!) I am still fairly active and working, albeit on reduced hours. I never did receive your emails, guess they got lost in cyberspace somewhere! I've checked my spam filters etc. and can't find anything. Best wishes, Nyonuk.

Posted 1/31/2007 5:55 PM (GMT 0)
Will keep checking to see how you get on. My husbands surgeon said was like huge fist squeezing his heart and sooner this surgery is done the better. He also went back to work initially like you on reduced hours but within a v. short while [weeks] couldn't manage the walk to office and had to get canvas bag as briefcase too heavy for him. Hope you are soon as euphoric as we are.

Posted 2/5/2007 4:07 AM (GMT 0)
Sherwood,

Your surgeon's image of a fist clutching the heart is similar to what my surgeon told me post surgery, that both my ventricles were being "squished" by my tough pericardium. That had been my own internal perception for 2 years, that my heart was being held in a tight fist which hampered my physical activity. If I tried to walk more than 2 blocks, I got exhausted. This forum was very helpful to me in matching my symptoms against others'. I recall one of the posters here describing a symptom like feeling a foot pressed across their throat. This matched what I was feeling. I read as much of the constrictive pericarditis medical literature as I could and never found that described. CP is a bizarre and insidious condition and here is where fellow sufferers can be helpful in a different way than medical specialists. One of my first perceptions after I regained consciousness post surgery was that I could take a deep breath and fill my chest even with the pain from my chest wound which made me feel that I was going to get my life back.

I had my surgery 6 months ago. It lasted 3 1/2 hours with no complications. My coronary arteries were clear but the surgeon had warned me that even so, I might need CABG if the arteries had to come out along with the fibrous pericardium. I got lucky. I walked around the ward with the receptacle for my chest tubes in a cart 24 hours after surgery and climbed stairs the day after that. I was very motivated to get out of the hospital! Having the chest tubes taken out was no fun. I asked for extra morphine and got it!

Nan,

I'm going to ask to have my thyroid hormones checked at next doctor visit. I've become suspicious of my metabolism slowing down because I've put on weight which I'm finding hard to take off even though I've resumed my pre-CP level of physical activity.

Eukard
Posted 2/5/2007 6:56 PM (GMT 0)

Hi eukard and thanks for posting. It's only 11 days but I see such a difference. It was affecting his liver and he was becoming jaundiced but already the whites of his eyes are clear and his abdo. [full of fluid despite diuretics ] is flat. On downside he has a weekend of pain, insomnia and not able to eat. Our Dr said no wonder as hospital sent him home on paracetamol. He now has more effective pain killer. Also I think euphoria of 'I'm alive!' had worn off. He had no pain at all when drains removed but they had given him the devil everytime he did coughing and deep breathing so he was really glad to see them go. His weight is now 11st 4lb  [158lb to you across the pond] and he is 6f 2ins so keen to see him gain some weight but will be watching his TFT's having read so much about it on this site

He has lost that awful 'heart failure' cough and although not walking far is now walking not shuffling. Incidentally our Dr also said that by rights he should still be in hospital - what is it with you guys that you bounce back so quick?

Posted 2/6/2007 1:01 AM (GMT 0)
Hi all..I have to say that I am soo glad that i found this site. I am having my pericardectomy next week....actually probably on Valentines day. Did anyone have a Cath done before their surgery? My surgeon is doing that a week from today, thenhe said he would do the surgery Valentines day. I am pretty scared about the whole thing partly because I am so young to be having this done (21yrs) but i have also heard that it is better to get it done while your young. They have been contemplating this surgery for awhile and I am glad that they are finally going to have it over with. How was the Cath for anyone who has had one? Can you tell me anything I should do before I go into the hospital to be prepared for when I get home to make things easier? Any advice on what to expect after the surgery? Thanks for reading this...I guess I am just looking for a little bit more of what I should expect. Thanks everyone and have a good night
Posted 2/6/2007 5:50 AM (GMT 0)
Snurse611,

It's normal to be scared. I was terrified by the idea of surgery for over 2 years and my symptoms were variable enough that my doctors didn't press surgery. I tried a series of drugs and kept hoping to find a magic bullet. Finally the swelling in my abdomen and legs - venous congestion because of pericardial constriction became overwhelming and I came to the conclusion that surgery was my best (and only) option left.

I had catheterization of both sides of my heart a few weeks before surgery. They do the left side of your heart to check coronary arteries and the right side to check the intra-chamber pressures which establishes the conclusive diagnosis of CP. Your surgeon must be pretty sure of your Dx already to schedule both cath and surgery. CP is invariably progressive and you are correct that it is best to get it over with sooner.

I had my cath under conscious sedation. I was awake throughout, had slight discomfort from the initial artery puncture and then noticed nothing. My groin was a little bit bruised afterwards but that was it.

People have written a lot here about their surgeries and recoveries. I found their posts extremely helpful and suggest you read them all. CP is a rare enough condition and people sharing their experience is priceless. I had felt so lousy for 2 years that my relief from symptoms made my surgical recovery seem easy by comparison.

Several folks here have recommended that you keep diligent with the incentive spirometer they give you to promote deep breathing after surgery. I support that. After a few weeks, I slacked off and developed fluid in my lungs which got me back to using it religiously!

Eukard
Posted 2/6/2007 2:15 PM (GMT 0)
Hi snurse611. My husband had cath done as soon as he started having problems. He had a local in his groin and was fascinated to watch it all on a screen above him. I am a nurse and had found patients seemed to forget it was them up there and it distracted them. When he had had surgery the pressure in his right atria had gone from 30 to 15 like magic. It seems that is the definitive test and if pressures are up you know it's CP. It's scarey-I've never been so scared so goodness knows what it is like for you folk having it but you are young and will do well. It is a condition that can only get worse and this way you will be cured and able to enjoy life again. It's only 12 days since mu husband had the op but he went out for a short walk today, helped dry dishes after lunch. He couldn't do that pre surgery. I clung to this site like a lifeline. Time passes and soon you will be like all the others saying 'I did it I'm fine'   Chin up.X
Posted 2/6/2007 2:18 PM (GMT 0)
Forgot to say. My husband says make you sure you keep taking pain killers and make them as strong as you need, He put himself back a day or two trying to be brave. Also take anything offered to prevent constipation. Only other tip is go homa asap!

Posted 2/22/2007 5:51 AM (GMT 0)

confused  Hi Guys, Iam a 50 year old man and I have had recurring Pericarditis since last April and had a strong episode that has now lasted 6+ weeks. I have found very little inforamtion online about a complete Pericardial stripping that my Doctor is now suggesting.

 I have been concerned about long term side effects but the pain is terrible like everyone has posted. I have an MRI tomorrow.

 I just want to get back to being active again, Golf, biking etc.

 How long does the average person need off from work. I own my own business and I am wondering how long I need to shut things down.

 Are there any restrictions that come with the Pericardiectomy after you have recovered?

 I don't drink alcohol much but like to have a glass of wine or a beer when my wife and I go out to dinner on Friday nights. Is that now out of the Question after full recovery? I suppose spicy food might have some limitations as well. It has been months since I have had a dinner at a good Mexican Restaraunt and I sure miss that.

 I have no other issues that show up other than a slightly enlarged Atrium.

 The whole thing is scary but I know it is something I need to get on with.

 Has anyone heard of any long term risks associated with removing the Pericardium?

 Thanks to everyone for your posts as I have been really stressed until finding this site. Any feedback is greatly appreciated!!!                        

Posted 2/22/2007 7:15 PM (GMT 0)
Hi Boog, We were told by both the cardiologist and the cardiac surgeon that this is the one heart condition that is curable. Anything else they said you are buying time but this, once done, is a cure. It is 4 weeks today since my husband had a pericardiectomy [he is 58]. He is now walking one and half miles a day. eating well again, has lost 5" off his waist where fluid has gone and liver is returning to normal. He is enjoying a glass of red wine with meals on Dr's advice. Easy for us as we are through the worst but we were told the sooner done the better. This is a horrible time for you and your family, I hope you feel better soon.  Cheers Sherborne.
Posted 2/22/2007 7:18 PM (GMT 0)
Oops forgot! Told that 6 weeks off work is minimum but 12 weeks is better if you can manage it.
Posted 2/23/2007 8:45 PM (GMT 0)

Thanks for responding Sherwood,

 Did they mention any long term risks of the procedure with your Husband?

 I have 2 doctors who disagree with what to do.

 I have pressure but that is about it. No other signs other than discomfort which has come and gone in the past.

 In December I had no signs other than a little inflammation. I then got the Flu and things went downhill fron there.

 I told the Doctors I don't even want the MRI results until next week. I just want a clear mind for the weekend.

 The pain comes and goes so I am not sure if that is hope that it might stay away as 1 Dr. has suggested.

 I can't thank you enough for responding as I feel like I am in the dark since this condition is so rare.

                Boog

Posted 2/24/2007 4:16 PM (GMT 0)
Re risks. There are all the risks associated with heart surgery BUT it was impressed on us that because my husband was young [58!!!] not overweight, non smoker etc the risk was reduced and surgeon expected him to be OK. Once pericardium is removed that is it, gone. No-one seems sure exactly what it is for a bit like appendix but you can quite well do without it. I would imagine the only long term problems would be if the constriction carried on long enough to cause other problems. My husband only got pericarditis last March and never suffered the pain etcthat you are just went into heart failure which quickly escalated as pericardium became more constricted. He did not have MRI but I think that was because he had already decided he could not live like that and was having the op. If MRI shows thickening and scarring I think you have to go for it. We were told too late for steroids and diuretics although helped initially soon needed higher doses and still not helping. I really do feel for you because we were so out on a limb. I contacted British Heart Foundation and Zipper Club but no-one seemed to know of anyone who had had this done. This site was a godsend and really gave us cause for optimism.  Chin up you can cope! Sherwood.
Posted 2/27/2007 10:37 PM (GMT 0)
Hello all...just happened to check back into this forum, I had been actively on here back in December 2004, when I was diagnosed, and treated, for a severe case of Pericarditis. I am now over 2+ years post-surgery, with no ill effects. Still on diuretics, and Heart meds.

Always happy to lend advice. Just scanning the posts, I wanted to lend my personal experience. If anyone is looking for the best of the best (my humble opinion), have your surgery done in San Francisco, CA, at UCSF Medical Center.

The head of Cardiothoracic Surgery is Dr. Scot Merrick, he is #1 in my book ( and my heart :) )

take care!!

Eric

OLD POSTS::::

Good afternoon...

So glad to have found this site, this forum....

My story, in a nutshell..

( I am a 37 year old male in good health, other than my heart troubles
for the moment.... )

I began a posistion in a warehouse, full time, lifing, packing
shipping, genral labor, back in Sept of this year.

On Sept. 9th, I suffered an abdominal muscle strain, and subsequently
went to my company's Occupational Health Clinic for treatment.

The MD on staff noticed my enlarged liver, and immediately referred me
to the County Emergency Room, where I was seen, that MD also addressed
my condition as relating to a liver infection of some sort.

He, in turn, referred me to a Gastorenterology specialist, who looked
at the bigger picture, noting that I had had similar liver syptoms in
1999, which had passed, but still leaving me with a jaundiced look.

My liver levels ( platlets, bilirubin, etc. ) were all haywire, so, he
ordered a liver biopsy. Although the bioposy did not work on the day
they tried it, I did get a full chest Xray.

The severity of my constrictive pericarditis was obvious in the film,
showing a shadow around my heart.

I then had an echocardiogram and EKG.

THEN, I got the news, surgery was iminent.

I could not have been more blessed with the doctors I have seen thus
far, as I am being treated at the #6 rated hospital in the United
States ( according to US News and World Report ), which is the
Univeristy of California Medical Center, located in San Francisco.

My surgery is scheduled for Dec 16th at 6:00 AM.

I will be sure to check in here often now, and relay my progress, and
to pray for all of you out here...

Regards.

Eric
Posted 2/28/2007 4:43 AM (GMT 0)

Hi All,

 Sherwood, I hope your husband is well and continues to improve. Is he still getting more energy?

 Eric, Thanks for the post, I am here in the Bay Area as well and have opted for Stanford as I had had a slight mishap during an ablation at UCSF which created the problem. But I know those are the risks with Heart surgery. UCSF is really highly regarded. I love all the Doctors up there but I needed a little more attention than they could provide and it is further from where I live. (2 miles from Stanford)

 about 2 weeks ago I was told I probably needed the Pericardiectomy and scheduled an MRI. They called yesterday and felt now that a shot at steroid therapy would be worth a shot as the MRI report wasn't as bad as they thought it would indicate. I am not sure of Steroid therapy success but it must work for some people.

 I am scheduled to meet and discuss this with the Doc on Thursday.

 I am not sure what they found but they clearly think I should wait.

 Part of me wants to get it over with but I know I need to be patient.

 My wife is going through Chemo for Breast Cancer which is also creating stress on me and the kids. I am sure that isn't helping matters.

Eric , thanks again for checking in, I would sure like to stay in touch as well. As you know the mind wanders.

 It really helps to hear your stories and I appreciate the 2 of you responding to my questions. I will post on Thursday after my appt.

           Many thanks,  Boog

Posted 2/28/2007 7:07 PM (GMT 0)
Good morning, Boog...

Good to hear from you. I will keep up with you as best I can. You and your family are now offically on my prayer list, I empathize with you, as I speak I am in my Dad's hospital room, he is looking at a Cancer diagnosis, and we are getting prepared for hospice.

Just remember, when it rains it pours, however, things always happen for a reason, the way my pericarditis presented itself was confirmation of that.

Since my diagnosis put me on disability, every bit of my hospitalization and surgery, and recovery, was paid for. Imagine that.

The only I can think of for the moment, is, if you do go for the surgery, or, even if not, be on the lookout for the liver functions, as
they are comromised by the weak heart.

Also look out for swelling, and edema in the legs, and chest. I had a terrible setback after release from UCSF for the surgery, and went to an ER, where it was almost impossible to get the pain under control, as I remember, steroids was all that finally worked, though my MD's at UCSF were against that.

Be your own best advocate. Have ALL your meds listed at ALL times, in your wallet, on your person, accessible at all times.

Don't ever be afraid to call 911.

Consider having a Cardiac Catheterization, to see what function your arteries and veins near your heart are.

Make sure your Advance Directives, DNR (do not recesitate), and Power of Attorney papers are in place, and perhaps for your wife too.

It's hard reality, but important just the same, it will actually bring you peace of mind, should you go into the hospital at any point, and they
ask these things.

Just an FYI, if, by chance, you were to go the east bay at any time, avoid Sutter Delta Medical Center in Antioch, I had horrific care there.

Well, good luck, and God bless.

Eric
Posted 3/1/2007 4:43 PM (GMT 0)
HI Boog. Worth trying the steroids I would think. Sadly by the time my husband was diagnosed it was too late for the condition to respond. Worth remembering as well that this condition, if it does get worse does so slowly and is not like heart disease of arteries where you can just drop!! we were lucky as we had private insurance so could pick and choose and had the best centre for cardio surgery on our doorstep. I would go along with getting things in order though. We went and sorted wills out etc. and although it was upsetting at least gave us peace. You really do have a lot to cope with right now. My thoughts are with you. Be brave. Sherwood.

Posted 3/2/2007 3:41 AM (GMT 0)

Thanks Eric and Sherwood,

 I had my Doc appt today. They reviewed my MRI with a few surgeons at Stanford who all agreed that I wasn't bad enough yet for surgery. They even held off on the Sreroids for a couple weeks since I am improving a little everyday albeit slowly. They also said I had 3 spots of adhesion but not bad enough to do anything about yet. As far as fibrosis they just can't tell but it is not yet constriting the heart function enough to warrent the surgery. My wife went with me and asked her questions. I am trying the colchicine thing and Motrin for a while longer and really watching the the stomach and liver thing as well. I am in pain tonight but a little better everday. I don't know much about this website and don't know about staying in touch with you guys without just posting here. I am so grateful to both of you for your messages.I wish I could email you directly to spare everybody else my long messages. I will post in a few days to let you know how things go. The pain does come and go now which a few weeks ago it was non stop. Eric, I will pray for you and your Father and for peace in your life. I lost my Mother last year to Cancer and it was tough but she remains in my thoughts and heart daily.

 Thanks again, Boog

Posted 3/3/2007 4:01 PM (GMT 0)
Hi again Boog, I will leave my e-mail address on for the next 48hrs in case you want to use it in future. You find it by clicking the little envelope under my user name I think. My husband never suffered the sort of pain you are getting so maybe pericarditis is still active and will all settle back to normal. I do hope so.

Posted 3/19/2007 2:41 AM (GMT 0)
Hi everyone!

Hi Boog...welcome...I wanted to say that they tried steroids with me too...and I was told if they would have tried them earlier I may have been able to avoid surgery.  It was too late for me but it's worth a shot if you can avoid surgery.  Hope it is going well.

It's been a while since I posted but I had a pericardiectomy in Dec of 2004 and have felt great ever since.  I have no meds or limitations other than a new hypothyroid problem...but no big deal.  I'm happy to share my story if it helps in any way.  I had my surgery at Mayo in Rochester MN...

Eric good to hear from you again!  We are on a similar timeline...

Hope you all are well...I'll keep checking back...

Nan

Posted 3/19/2007 3:17 AM (GMT 0)

Hi Nan,

 Thanks for the post. There is not a lot of places to go to learn or understand the whole Pericarditis thing. I will be posting as things progress so I appreciate your comments. I am limited physically but they said I have 3 small adhesions and am at the very high side of normal Pericardium thickness. It has stiffened from this thing recurring because a few hours after any substantial activity I get sore.

 I am also trying Serrapeptase in addition to Colchicine and Motrin. It does seem to help some but I don't know much about the product.

 I also have afib which flares up with Pericarditis. I hope that gets better as I have already had 2 ablations and the Pericarditis has made anti arrythmics off limits due to irritation of the Pericarium.

       Many thanks to all of you, Boog

          

Posted 3/19/2007 2:04 PM (GMT 0)
I am new to this site and I hope I am posting correctly. I'll write later about my pericarditis journey but for now I'll just say that my cardiology team at Barnes-Jewish Hospital here in St. Louis are recommending a pericardectomy. I'm going to the Mayo Clinic in Rochester next week for a "second opinion." Can anyone tell me if they know of a good place to stay there that is reasonably priced and clean, etc?
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