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Posted 6/15/2010 10:01 AM (GMT 0)
Hi,

My husband Michael has constrictive pericarditis ( at least sme of the doctors think he does - I 'll say more on that later), with high pulmonary artery pressure.  Sometimes after flying he shows more signs of heart failure, such as swelling and shortness of breath.  This goes away in a gew weeks.  We have not really been told by any doctor that this is related, but we have seen a pattern.

My husband is scheduled for surgery on July 2nd at Cleveland Clinis Florida for a pericardectomy and a possible tricuspid valve repair/replacement.  We are meeting with their cardiologist on Wed.

My husband's local surgeon who did his pericardial window 5 years ago, diagrees with the diagnosis and thinks my husband has restrictive pericarditis and the operation will not help.

He gave us information ( med journals) which we faxed to Cleveland CLinic for our meeting on Wed.    Meanwhile , today we have an appt with the local cardiologist to try and make sense of this.

This can certainly be a roller coaster of a ride.

Take care

Diane

 

Posted 6/18/2010 11:19 AM (GMT 0)
Hi

Just an update to my husband Michael's condition.  after conflicting opinions, we are satisfied with Cleveland Clinic's opinion.  Dr Asher from Cleveland Clinic Florida, was very thourough in explaining to us why the other doctor would have come to his conclussion.  He said that constrictive pericarditis is the most difficult of the heart diseases to diagnose. 

If you could call an experience where you end up needing surgery as excellent, this would be it.  Cleveland Clinic was outstanding . The surgeon spent over and hour with us, the cardiologist spent about and hour and a half and that time didn't include the tests, just one on one time. 

We are scheduled to go to Cleveland Clinic on July 1st and my husband will have the operation on July 2nd.  It will be the pericardectomy.  After the constriction is removed, they will measure the pressures in the tricuspid valve and if necessary, do open heart surgery to repair or replace the valve.  Then also, they may be able to do a maze procedure for the a fib or a flutter.

I will keep the board posted on his progress. 

Good luck all.

Diane 

Posted 6/22/2010 6:40 PM (GMT 0)
  Hi everyone. I had my periacardectomy back in October of 09. Brigham and Womans Hospital in Boston performed the surgery. I have nothing but great things to say about that hospital. The facility and doctors were top notch. Along with the periacardectomy  I had a hole in my heart closed and a full maze procedure to attempt to get my heart back in rythym. I can't believe the outcome. I'm off almost all of my meds and I feel better than I have in 15 years. The operations were a total success.
Posted 6/22/2010 6:51 PM (GMT 0)
  Diane   I wish your husband the best of luck. I've hears nothing but good things about Clev. Clinic.  I too had contsrictive periacrditis. It's been 9 months since the operation and I feel great. My heart was in Afib for about 5 years. I had the maze procedure done and it took about 5 months but my heart went back in rythym and has stayed there ever since. Be patient it sounds like your husband is in good hands and will turn out fine . Keep the faith.
Posted 6/23/2010 11:05 PM (GMT 0)
Hi French 57,

What encouraging words!

It seems that your situation is somewhat similiar to my husbands.  I hope I am not being to pushy, but if you could answer some questions I would certainly appreciate it.

about your maze procedure, did you have to remain on coumadin and any other medicine until it started working?

How long was your surgery?  How many days were you in the hospital?

Thanks for everything.

Diane

Posted 6/27/2010 11:54 AM (GMT 0)
Hi DianeS

I hope your husband is doing well.

I am still on coumadin. My cardiologist wants to make sure that my heart doesn't go back into A-fib before he takes me off the blood thinner. The only other drug I'm on is Sotalol which I've been on to slow my heart rate and keep me in rythym. I would imagine once I stay in rythym for another few months he'll take me off of it.

I was in surgery for about 9 hours total. I ended up staying in the hospital for 10 days.

Please feel free to ask me any questions concerning the operation or recovery.

Good luck to husband and to you.


Todd
Posted 6/27/2010 4:33 PM (GMT 0)
Hi Diane:  I don't know why, but I'm not getting any notifications of new posts by email.  I thought of you today and went to look at the blog and see that you and your husband are making progress.  Will be thinking of you this week and sending positive thoughts.  I'm still waiting for the 13th, but it looks like my pericardiectomy will be postponed until I clear up an infection, which is taking a long time to get rid of.  Getting discouraged, but there's a reason for everything.  I'll keep checking back (maybe the moderator can tell me why I stopped receiving notices of postings via email)  I talked to my surgeon friday about the possible postponement and he's ok with it.  I just am tired of feeling like this.  Anyway, angels be with you both on Friday.  God Bless.  Jane
Posted 6/27/2010 10:41 PM (GMT 0)
Dear mrsbuck
Hey there. The Administrator made some adjustments to the forum this past week so perhaps that caused you not to receive emails. Next time you post be sure to check the box Notify me of reply postings by e-mail.
Posted 7/2/2010 12:18 PM (GMT 0)
Hi,

My husband, Michael went into surgery about 45 minutes agol  'the surgeon has decided to do the pericardiectomy and the tricuspid valvve replacement.  He sid I should have an update in 3 hours with the surgery taking about 5 hours. 

Scary, but I feel we are in good hands.

Keep you posted,

Diane

Posted 7/3/2010 12:09 PM (GMT 0)
Hi Diane: Thinking of you both. -Jane
Posted 7/3/2010 2:29 PM (GMT 0)
Hi Jane,

Sitting in ICU right now wiht Michael.  His surgery lasted 9 hours , but mailly due to a change in plans once they opened him.  They did a cardiac tamponade , tricuspid valve replacement and a maze procedure for the heart arrythmias and put in 2 pace maker leads.

He is doing very well, and all is expected to be fine.  Just maybe a little longer than 4 days. 

thank you for your thoughts and when I know more, I willl let you know.

Reception is limited .  i cannot always access the internet.

Diane

Posted 7/9/2010 6:10 PM (GMT 0)
Hi all,

I have been reading this thread and the previous ones about constrictive pericarditis and getting a pericardiectomy. My diagnosis has not been confirmed 100% yet -- I still need to have the heart catheterization done. I am 26 years old and have lupus, which is why I've had several bouts of pericarditis and effusions over the years. I developed shortness of breath, a dry cough, and much more severe fatigue at the beginning of this year and I've been trying to get it figured out since then. Outside of having a small pericardial effusion, nothing was showing up on the tests the docs were running (which were mostly on my lungs) until my cardiopulmonary exercise test, which showed restriction around my heart (they said this based on a low stroke volume).

Since then I've been switched over to the cardiology clinic and they've done another echo to compare to previous ones, but my actual appointment with the cardiologist isn't for another month because she is going out of town. I really just want to get the heart cath out of the way so I can figure out my life -- this waiting is the worst part!

I'm happy to know that this might be something that is fixable, but I'm also nervous about the possibility of surgery and how my body will handle it with my lupus and the many medications I'm on (a couple of which suppress the immune system). I have had two minor surgeries prior to my diagnosis and my body really flipped out after one of them, so what should have been an overnight hospital stay turned into a 6-day hospital stay...hence my concerns about this one.

Does anyone have any recommendations for things to think about as I finish up the diagnostic process? Also anything to know about the heart cath would be great. From what I've read, it seems like the waiting appears to be the worst part. :) I'm used to dealing with medical stuff as a lupus patient, but this is all stressing me out a bit. I just want to feel better already -- I hate that I can't do my job well anymore (it is quite active at times) and that my exercise tolerance is so diminished. I used to love going hiking and I can't even think about that right now.

Thanks for the help!
Posted 7/9/2010 6:22 PM (GMT 0)
Hey there,

You had a few answers in your original post that would help you. In case you cannot find your first post here is a link for you. Just click on the link.

https://www.healingwell.com/community/default.aspx?f=42&m=1843513

Kindly,

Kitt
Posted 7/9/2010 6:37 PM (GMT 0)
Thanks Kitt. I did see those and just hoped I could get some experiences in this thread from people with a similar situation or people who have been through the surgery at some point.
Posted 7/16/2010 1:46 AM (GMT 0)
Hello Diane & Mrs Buck,

 I haven't been on the site for a while with work & all but I am very sorry I missed the posts you all have been making over the past month or so. The Internet is filled with good & bad info & it does scare people. I am reading through all your posts & all I can say is open heart surgery is tough stuff but this procedure of stripping of removal is more common than people think. It is often done with other procedures as was mine. People with afib can't tolerate the pressure of the perciardium squeezing the heart & that often sends them into afib as was the case with me. Scary yes, but quite easy for a good surgeon & it sounds like you all have found the proper help,

 My email is in a little envelope box next to my posts if you care to write directly.

 I am now 3 years after & feel better than ever. I will pray for all of your well being & be happy to answer what I know f it isn't too late.

 Diane, I too had a Maze at the same time, remeber the heart will be unsettled for a 3-4 months but things will be fine, I was still getting afib symptoms for a few weeks after the surgery & at 4 weeks it went away & never came back, The nerves have either been cut, burned or frozen depeding on what type of maze they did , the nerves are going to be really wild being disturbed like that . but things calm down fast after 4 weeks or so, Don't anyone lose faith, they are good at this stuff now days, I will keep a better eye on the the message board from here on in,

              Boog

 

Posted 7/30/2010 6:05 PM (GMT 0)
tongue  Hi folks:  It's over!!! Complete pericardiectomy on 7/13, home on 7/18.  Long road but doing great.  My entire pericardium was adhered to my heart and diaphram area.  My surgeon at Dartmouth was EXCELLENT.  I have my good and bad days.  Today is good.  Went to the local high school outdoor track with my hubby and walked 3/4 mile in 30 minutes.  Finally sleeping in bed and not a chair.  Stronger everyday.  I feel so much better already.  To those about to go through this, a positive outlook is the most important thing you need and a good support system.  My husband is my rock as is my family.  So, onward from here.

Diane, I hope all is well with you and Mike.  Still thinking of you and anxious to hear how you're doing.  -Jane

Posted 7/30/2010 6:33 PM (GMT 0)
Congratulations! Good to hear that you have been doing well after the surgery. I went through the complete pericardiectomy 10 days ago and am now doing great at home, walking, resting, and recuperating. I want to thank all the folks who have provided valuable information about the surgery and who have shared their experiences. These information and experiences helped me a great deal in making my decision, finding the best surgeon, and alleviating my anxiety.

Gary
Posted 7/30/2010 7:05 PM (GMT 0)
mrsbuck

Great news and I am so glad you have done well. Thank you for sharing your success with all of the members here and keep on walking - at your own pace.

Kindly,

Kitt
Posted 7/30/2010 9:18 PM (GMT 0)
Nice work Gary,

 It isn't easy to go through but sure feels good to have things back to normal, although at 10 days you are still sore, it gets much better fast. Life is good , hope you enjoy it!!

                 Boog

Posted 8/18/2010 12:07 PM (GMT 0)
Hi everyone.  Thank you Gary, Boog and Kitt for your positive thoughts and great info.  Heading down to my first post op appt with the surgeon today.  Anxious to see how that goes. The biggest question in my mind is one that they can't answer because this is so uncommon:  What is the life expectancy without a pericardium?         I've been connected with a professor/MD at Yale who wants to study my case because this is so uncommon.  He has only diagnosed one case of constrictive pericarditis, so I am giving him access to my records.  If it helps but one person, that wold be great.     Still sore, but expect that for a while, and having good days and bad days but I have to say, it's getting so much better.  People say "don't overdo it" but how do you know your overdoing it until it's overdone????  I notice it the next day and have to lay low.  Has anyone heard from Diane regarding her husband and how they are doing?  Have a great day and enjoy every ray of sunshine and all the flowers and birds and breeze (I could go on and on----but really noticing everything to the max) -Jane cool
Posted 8/18/2010 11:10 PM (GMT 0)
mrsbuck

It is good to hear from you.  I hope your postop visit with the surgeon went well and that you are right on track with the healing process.

Listen to your body and it will tell you when it is time to sit down or take a nap.  If you feel tired allow yourself to rest.  Enjoy the good days and rest through the not so good days.

Blessings,

Kitt

Posted 8/19/2010 3:12 AM (GMT 0)
Hi Ms Buck,

 You do need to take it wasy for a while, regarding your question about life expectancy after the stripping, I have gotten myself back into fairly good condition & have been told it shouldn't influence my longevity at all .   That is provided I take care of myself like anyone else should.

 Not sure what anyone else has heard but I can do everything else I could before & some.

  " Quality of Life" also comes into play, I sure like living the normal life again,

 Hope you enjoy it too!!

             Boog

Posted 8/19/2010 11:43 AM (GMT 0)
Hi folks: Thanks for the advice and hope. It went well yesterday at my post op appt. Things are going along as expected. The EKG showed a little irregularity and when I explained that I get a few heavy fast heart beats, the surgeon explained that it's time to reduce my Lasix and continue the regular dose of Potassium, as my Potassium was low and I was dehydrated. He said these heavy heart beats are normal and will go away and that it will be a year before I'm back to myself and better. He said there is no reason why my life expectancy would have changed. I can live a normal life (after all is healed). I go back for follow up in a month with the cardiologist. I've been discharged from my surgeon. He was so excellent. I'm happy we didn't have to fly to Mayo in Minnesota when we have great surgeons at DHMC in NH. I would recommend him to anyone. I will keep in touch with this blog and would be willing to talk with anyone going through this. Good luck to everyone and God Bless. (getting anxious about Diane and Mike---no news). Great day to all.-Jane
Posted 8/19/2010 2:26 PM (GMT 0)
Jane,

Great news at your postop visit.  I too am glad you found a great surgeon and facility as any time you can be close to home is awesome. 

Do keep in touch and sending you blessings for a long and healthy life.

Kindly,

Kitt

 

Posted 8/20/2010 1:15 AM (GMT 0)
Hello Ms Buck,

 So glad to hear the good news, You will be back to normal before you know it,   Especially with Potassium suppements even without you should try 250-400 miligrams of chelated magnesium, I have had arrhythmias for many years including Afib. I now supplement with the Magnesium & the missed beats (PAC's ) have pretty much gone away. It helps the balance of Electrolytes    3 different Cardiologists have suggested it & it continues to help keep the Heart more calm.

 Might be worth a try,

        Keep up the good work, Boog

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