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Posted 10/22/2009 2:50 AM (GMT 0)
Pericarditis & Pericardiectomy


Pericarditis
http://www.mayoclinic.com/health/pericarditis/DS00505



Pericardiectomy]

http://www.debakeydepartmentofsurgery.org/home/content.cfm?proc_name=pericardiectomy&content_id=274
Posted 10/22/2009 2:52 AM (GMT 0)
Nan2 said...on 10/18/2009 @ 10:38PM DST
Hi there Spugsie....



Checking in after a long absence from this forum...just wanted to send my greetings to you and encouragement. On Dec 14 it will be 5 (!) years since my pericardiectomy...hard to believe. I was 35 with an 18 month old and a 5 year old. Just "celebrated" my 40th birthday and had to really give thanks for being able to do just that. I don't believe I'd be here had I not had the surgery.



I was wondering if you had been given the actual diagnosis of constrictive pericarditis. It is different than pericarditis. Not all pericarditis turns into constrictive as I'm sure you probably know. My symptoms for pericarditis and constrictive pericarditis were very different. My advice is to seek the best specialist that you can in your area...and travel if you have to. I was fortunate to "land" at Minnesota Mayo but that is driving distance for us. Just by chance, I ended up with one of the country's leading surgeons for my percardiectomy. I'm thankful for that because I would have gone local if they could have figured my out. I found this forum a month before my surgery and cried with relief to read stories of other young people that "made it" and felt great.



If there is anything I can do/add...please let me know. For some reason, I don't get alerted with new posts even though I select it when I post...so I'll try to check regularly.



Best of luck to you. Whatever is your best option, we'll be here to support you!



Nan



Posted 10/27/2009 12:58 AM (GMT 0)
  Someone had a question about a good hospital in the Boston area. I went to Brigham and Women's hospital for a pericardiectomy. It has been 3 weeks since my surgery. I feel they did a great job although I still have a few months of recovery ahead of me.

Posted 10/27/2009 11:37 AM (GMT 0)
french57

Hello and thank you so much for your input. I have heard good things re that hospital too. It is always good to hear first hand reports so again thank you and do stick with us.



Hugs

Kitt

Post Edited By Moderator (Admin) : 8/18/2010 12:34:09 PM (GMT-6)

Posted 10/27/2009 5:27 PM (GMT 0)
Can anyone tell me how long it took before chest pain and fatigue went away after the surgery?
Posted 10/28/2009 1:44 AM (GMT 0)
Dear french,

I do not know a standard answer to give you here and I suspect each person recovers at their own rate. I am wondering what you physician has suggested to you. I am sure you would like to know so you can plan your life and I wish I had the magic answer.

I do wish you the very best and know I care. Hopefully you will have a quick recovery.

Blessings,

Kitt
Posted 11/8/2009 7:52 PM (GMT 0)
Hi - we have not posted for a long time - I see my husband wrote last in December 2008, 3 weeks after his pericardiectomy. His "first anniversary date" is Dec. 10. Health-wise, life now is good! To give you a sense of his "timeline" in healing read below. Also keep in mind that he had no prior health issues (like radiation etc). His original pericaridits apparently was caused by a virus.


I want to encourage those considering the pericardiectomy surgery and who are still going through the many many diagnostics necessary. if you look at my husband's last post he details some of the conflicting diagnostics that were done with him.

The day of his surgery, while my husband was still being stitched up, the cardio-thoracic surgeon who had done the surgery came out and told me "I wasn't 100% sure prior to the surgery that this was the right thing to do but once in there realized it definitely was the correct choice and glad you didn't wait any longer". My husband apparently has minimal residual heart damage (to atria) but it doesn't affect him now regarding his day-to-day functioning.

My husband did quite well overall and was diagnosed post-operatively with "chronic effusive constrictive pericarditis" and did not have a very thick pericardium. However his heart was constricted due to a thick "cellophane-like film" adhering to his heart. Apparently that is quite rare and difficult to peel off. He was in much pain the first few days - it turns out that the most pain was in the spot where the surgeon had the most difficulty with the "peeling" off of the adhesions. The drainage tubes were of course very uncomfortable.

However by the time he left the hospital on day 6, he was taking 2-4 darvocet ONLY per day and went on to just regular ibuprofen within a week or two. Three weeks after the surgery he really didn't seem to have much pain at all. The sternum didn't seem to bother him much at all (which seems odd to me - his wife. It was split in 1/2 during the surgery and wired shut). He lost 35 of the 40 pounds he gained (*inactivity or prednisone or fluid) prior to the surgery, over a period of a few months. He has NO pain now at all and his incision is faded to white (versus reddish pink). He will never be at the level he was prior to 2006 when he was in super-great athletic shape, however he built a fence (yes, digging the post holes himself with a manual post-hole digger) 6 months post-op. he can jog for 20 minutes at an 8-min/mile pace. He is on no meds at all. He just turned 49.

AGain, my advice is to get more than 1 "opinion" by a qualified cardiologist. Do research. Ask questions. Feel comfortable with your doctor. We ended up going with our local university hospital in Dallas, and it was a good choice. The first opinion was with another good cardio group. WE had contacted both Mayo and Cleveland as well as DeBakey center in Houston. In the end, we are happy with the decision we made.

we also benefitted from using this site and the many supportive folks who wrote back and forth (thank you).

Good luck and take care
Posted 11/8/2009 9:58 PM (GMT 0)
friscofive

Thank you so much for the update on your husband and his anniversary coming up is a great reason to celebrate so please do so in style.



I am so happy that his outcome was a good one and the right choice for him. Your coming back and sharing is a positive thing and bound to help other members facing this procedure.



Again bless you and thank you,



Kitt
Posted 12/3/2009 9:03 PM (GMT 0)
Hey now! Happy 5 year anniversary to all of us from good ol 2004. I had my Pericardectomy surgery in Dec 2004, at UCSF Medical Center in San Francisco. All is well, give a holler if anyone needs support, and a big howdy to all my good friends and loved ones out here......Merry Christmas!
Posted 12/4/2009 2:07 AM (GMT 0)
ericleer

Congrtulations


Kitt
Posted 12/7/2009 6:08 PM (GMT 0)
Hi everyone, I havn't checked in for ages and just wanted to give an update. It is now 7 months since my pericardectomy and I feel great. All the awful beathlessness and choking feelings have gone along with all the fatigue and worry. I'm back at work and keep active going to my gym cardio class. I started line dancing a couple of months ago, which I love and even started horse riding lessons with my grand-daughter.

I can honestly say that it was all worth it, even though it was the scariest time in my life and there was no real choice in the end.

Happy Christmas and a much better new year to all the forum members still awaiting surgery.

Spangles X
Posted 12/7/2009 11:28 PM (GMT 0)
Spangles X


Thank you so much for checking in and updating us on how well you are doing. I am so glad you took the time to share with us.



I wish you a very blessed holiday season too.



Gentle Hugs,



Kitt
Posted 12/21/2009 2:28 PM (GMT 0)
Hi All, I am hoping someone can help! My dad is to undergo a partial paricardectomy tommorow at Ohio State University. My dads main symptom has been fluid in the lungs and from what the doctors say, this surgery should help. I too have read all the reports about complications and I am SOO SCARED! Can anyone give me any insight into how to support my dad? Also, if controlling the blood pressure and limiting sodium what are the chances of reoccurence? Thank you~
Posted 12/21/2009 4:54 PM (GMT 0)
Good morning, all....this post is directed especially towards OHGirl09....

I had a partial pericardectomy 5 years ago at UCSF Med Center in San Francisco, I was 37 at the time. Fluid was a big issue for me, I actually spent that Christmas back in the hospital with recurrence of it, but emerged from it all none the worse for wear. If I can offer any advice, it is that I learned any kind of surgery where they enter the chest cavity, there is a chance for some "blues" for the patient afterwards. So, mood swings, and some downer days may be coming, but if you know it going in, you will do just great. Just keep his spirits up, even if you are feeling stressed, it is all perfectly normal. As far as complications, I'd just watch out for that fluid, and be a good advocate while he is in there, take good notes when the Doctor is speaking, ask lots of questions, and you will be rewarded with lots of good information, and in the long run they will respect you for being involved. Also make friends with the nurses, for sure, and see that he gets what he needs. I did have some fluid/lungs issues in the aftermath, and did have some breathing treatments. Just get that little breathing toy sometimes called a "volumectric excericser" (the one with the balls, you inhale to make them rise, and MAKE SURE he uses it as reccomended, even if he protests. A nice small pillow, a special one, is nice too, post op, to hold onto for dear life, when he feels a cough coming on. A good tip I learned from OT....when he is praticing breathing....tell him to close his eyes, imagine "smelling the roses" (inhale, nose only), then blow out the candles (pursed lips) out his mouth.
Most important, don't fear, FDR said it best.......

I am off to be an elf, so I will keep you guys in prayer, and if you need anything, feel free to reach out. Good luck, ad Merry Christmas! yeah yeah yeah
Posted 12/21/2009 5:20 PM (GMT 0)
Hi There, thank you so much and a very merry christmas to you! I appreciate your post back! I am truly trying to get involved, and crying my eyes out, as I write this so bear with me :) Can you tell me what, if any, pain you had afterwards? I will go out and get a pillow for him today. What was the cause of the fluid build up for you? Also, is that little breathing device always given? THank you again!
Posted 12/21/2009 5:52 PM (GMT 0)
GO BUCKEYES!.....

Hey, crying is perfectly in order, no worries. As far as his pain, it will be there at first, but they should keep it down in the hospital via IV, so that will be covered. Once he is home, he will most likely be in Codiene, you just need to watch out and make sure he dosen't get constipated from it, if he does, that is also normal. Just some prune juice is the speedy way to remedy that. Once again, you can ask all these questions prior to his release, so you will be fully prepared for anything. Most pain for me was when I had to cough, but he will learn to use that pillow you get him, I am certain, and they will help with that stuff in the hospital. The fluid was just an after effect, after they removed the tubes from my chest (that is fun stuff, I assure you....) And yes, they should surely get him the breathing machine, it actually helps to prevent the fluid on the lungs........... If he is not too busy, have them get him one now, so he can practice beforehand. I know the day prior to surgery is hectic, just take it all in stride, if you can. Just know you and your Dad are in my thoughts, and I look forward to hearing he is out of surgery, and doing well. I am off for awhile for errands, now, but feel free to use the little email link on the left, if you want to email me direct. Keep your chin up.

~Eric
Posted 12/21/2009 6:01 PM (GMT 0)
OHGirl09,

ericleer has responded to you from personal experience.



Cry your eyes out sweetie, you have the right to fear the unknown but then take a deep breath and believe. I was raised an only child and My Father was my world for so long so I understand how you feel about your Dad. Just know being there with him will comfort him. I promise you that will be his best medicine.



You have my prayers and also I am praying for your Dad to have a successful outcome.



Gentle Hugs to you,



Kitt
Posted 12/22/2009 2:33 AM (GMT 0)
Eric and Kitt,

Thank you so much for your thoughts and prayers! Just got home from visiting my dad at the hospital and his surgery is scheduled for 7am tommorow. He is nervous, but we got a chance to talk to the doctor and he feels that things should go smoothly. My biggest worries are now that something will go wrong during surgery or they will find the reason his heart hardened was cancer, though the chance of that the doctor said was small. We are going to the hospital in the AM prior to surgery and I just cant thank you enough for your kind words and prayers as my dad and I are so incredibly close~
Posted 12/22/2009 10:27 AM (GMT 0)
 

Dear OHGirl09,

I had a part peridectomy on the 27th of August and am today feeling very well. I can walk for 1.5 hours at a good pace, can ride a bike and generaly do a lot of things I could not do before the procedure. about 70% of the pericardfia was removed but at the back of the  heart it become too difficult as the calcification was embedded in the heart muscle. However I have been assured that this will have no effects on the functions of the heart.

I had discomfort but little pain and was up and about 2 days after.The nursing staff were fantastic and helped me stay positive.My wife, 2 daughter and 3 sons are all very gratefull and so am I.

I feel that being here typing this message is a miracle but that is modern technology.

Your Dad will have had his ops by the time u read this and I am sure that all will be allright for him. Take one day at the time and look forward to a happy tomorrow. U need to stay positive for your sake and more important for his.

I am on a number of medications, Tambocor, Inspra, Lanoxin,

Lasix, Slow K and Colgut ( Gout) and these control fluid, blood pressure, heart beats ( keeping them safe). I will most probably never be off them but the quality of life is incredible compared to what I went through for a long time and working full time as well.

 I ask the you focus on the good things in life, the things money cannot buy, the friendhips you have,  the people that care and those that think about you and your Dad. Yes there could be some though moments ahead but fear of the unknown is the

demon and one you need to slay immediately. Stick to the facts and do not worry about all the possible evetualities. Life does not work like that. If I worried about all that could go wrong I would have never gone ahead with the operation. But it had to be done for me to have a chance to spend more time with my loved ones. I am sure that your Dad shares some of these sentiments.

I am sorry for rambling on so much but only wish I could help you more.

Regards, Hardwood, the Aussie.

 

Posted 12/22/2009 10:37 PM (GMT 0)
hardwood

Thank you so much for the really great post and your positive attitude just shines through in your words. Welcome to HealingWell and I know you have given hope and support to a fellow member here in this forum.



I am Kitt and I wish you and your family a wonderful holiday.



Merry Christmas and good to have you with us.
Posted 12/22/2009 10:40 PM (GMT 0)
OHGirl09


We are right here for you and we will be awaiting word of how your Dad is doing. You are in my prayers and thoughts all day today. I hope mby now your Dad is resting in his room and even thow he is hooked up to tons of wires each one is monitoring how he is doing.



Hugs to you my new young friend,



Kitt
Posted 1/24/2010 5:34 PM (GMT 0)
Hello stkitt,

 I have not been on the site for a while but had many posts in the past. I had a full Pericardiectomy & a Maze procudure at the same time about 2.5 years ago. Full steam ahead with life. This forum helped me throughout the process since Pericarditus is such a unique condition.

 I had been to 3 top Cardiac Centers & got 3 different opinions. All cured now I welcome anyone struggling with to write even call if need be.

 Thank you again for keeping this forum alive, I have met so many great people before & after my procedure through this site.

              Boog

Posted 1/26/2010 6:12 PM (GMT 0)
Boog,


How nice of you to thank me...............I lost my oldest sister to heart disease and I am also an ICCU nurse retired so I have a vested interest in Heart Disease.



I think this forum is an important one and I am doing my best to keep it up and running for people that need it.



Gentle Hugs to you,



Kitt

Post Edited By Moderator (Admin) : 8/18/2010 12:35:59 PM (GMT-6)

Posted 1/31/2010 4:21 PM (GMT 0)
Hi All! I am new to this website. I find it extremely helpful in learning the stories of people who have similar experience with constrictive pericarditis and getting information about treating it. As learned from all of you, finding a good cardiologist and right surgeon is critical. I am in the process of finding a surgeon in the New York City area. However, the information about a surgeon performing pericardiectomy in treating this particular disease is limited. Does any have a story to share, or a surgeon to recommend, or information about a surgeon who is experienced in performing pericardiectomy in the New York City area? Thank you so much.

Gary
Posted 1/31/2010 5:02 PM (GMT 0)
Hello Gary and welcome,


Do you see a cardiologist..............perhaps he/she could recommend a surgeon. I am glad to see you are doing your homework in finding a surgeon that has experience and a good reputation for successful procedures in this area.



Again welcome. I hope one of our other members will have some info for you.



Kitt

Post Edited By Moderator (Admin) : 8/18/2010 12:36:04 PM (GMT-6)

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