Elisha
Hi everyone, I am starting a new thread as the other one is getting a bit long and difficult to manage. I hope this finds everyone well and happy...Take care
Elisha...
Thank you for starting the new thread.
Michael...
I know what you are going thru with the pain that seems to have no end. The cardiologists that I have consulted all feel that the pain is the trickiest part to treat with pericarditis. They also seem to agree that steroids is not the answer. In fact my current cardiologist would rather I have a pericardiectomy than start up on steroids. But each doctor has their own treatment regimens. right now my pain is being managed somewhat with the naproxen but if the condition progresses I will be running out of options. Is your pain worse upon inspiration and does it feel like a rug laying on your chest area?
John
Thank you for starting the new thread.
Michael...
I know what you are going thru with the pain that seems to have no end. The cardiologists that I have consulted all feel that the pain is the trickiest part to treat with pericarditis. They also seem to agree that steroids is not the answer. In fact my current cardiologist would rather I have a pericardiectomy than start up on steroids. But each doctor has their own treatment regimens. right now my pain is being managed somewhat with the naproxen but if the condition progresses I will be running out of options. Is your pain worse upon inspiration and does it feel like a rug laying on your chest area?
John
Hi Everyone,
Elvina is on the 2nd operation now. Before we were told that this surgery is to remove the hematoma and to explore what else causes the heart compression and plerual effusion after the pericardiectomy done 37 days ago.
We were just told that she is on bypass machine, which the doctors did not expect that to be used again this time.... hope it is not something too serious.
Nan - I am back to Rochester last night. Thanks for your prayer.
Ken
Elvina is on the 2nd operation now. Before we were told that this surgery is to remove the hematoma and to explore what else causes the heart compression and plerual effusion after the pericardiectomy done 37 days ago.
We were just told that she is on bypass machine, which the doctors did not expect that to be used again this time.... hope it is not something too serious.
Nan - I am back to Rochester last night. Thanks for your prayer.
Ken
Elvina is now in ICU.
The removal of blood clot causes bleeding and that's why she has been put on a heart lung machine for about 2.5 hours, which was longer than the bypass time during the pericardiectomy. We were told that the blood clot was mainly in front of the heart. This time the operation took about 4 hours from incision to closing up.
It was hard for me to believe and accept the fact that she had 2 surgeries within 40 days and both needed the bypass machine (the first bypass time was 1.5 hours and this time was 2.5 hours) !! Pray that there would not be complications at all and she will feel easier to go through the days in the hospital this time - I know I am asking a miracle.
Ken
Ken...I'm so sorry you are both going through so much. Have you gotten to talk with Dr. Schaff? Did he do the second surgery too? I have not heard of this complication before...did they say what caused it? Are they expecting her to feel better after having it removed? I will keep praying. I believe God will carry you through. I'm glad you are able to be there once again. I'll be thinking of you going through another nerve-wracking night...I hope this 2nd surgery will relieve the pain. I'll keep checking for news. God bless you...Nan
Ken...
I am sorry to hear that Elvina has had to endure so much in such a short time. It is a tremendous test of strength for the whole family, I am sure. I will continue to pray for Elvina and a miracle recovery.
John
Dear Nan and John,
Elvina is resting in the ICU in her second night. She has 4 chest tubes which are thicker than the last time.
During this operation, they did not find any other problems except the blood clot around the heart. The removal of the blood clot caused bleeding so they put her on the heart lung machine.
Their theory on the formation of blood clot is that it was caused by the bleeding from her first surgery. The bleeding was normal from such a big surgery. The chest tubes were supposed to drain most of the blood in the first couple of days, and then the body should absorb the rest. But somehow the blood coming out more than her body could absorb. (Her blood test result does not show any autoimmune disease to explain the formation of blood clot.) They said this happens rarely.. something like one in a thousand. The blood then clotted inside and compressed the heart. As the heart was compressed, it was not functioning well that caused pleural effusion leading to shortness of breath.
They said the management this time, as this surgery also caused bleeding though less than the last time, is to have four thicker tubes in her chest and to let them staying there as long as possible to drain the excess blood.
Their theory on the formation of blood clot is that it was caused by the bleeding from her first surgery. The bleeding was normal from such a big surgery. The chest tubes were supposed to drain most of the blood in the first couple of days, and then the body should absorb the rest. But somehow the blood coming out more than her body could absorb. (Her blood test result does not show any autoimmune disease to explain the formation of blood clot.) They said this happens rarely.. something like one in a thousand. The blood then clotted inside and compressed the heart. As the heart was compressed, it was not functioning well that caused pleural effusion leading to shortness of breath.
They said the management this time, as this surgery also caused bleeding though less than the last time, is to have four thicker tubes in her chest and to let them staying there as long as possible to drain the excess blood.
We know a lot of prayers from churches, family members and friends etc (including yours !!). As Elvina said, she could feel the power of prayer that has helped her put faith on God to face the 2nd surgery with a peaceful mind. And she know that is the peace from God although she is suffering physically. Without Him, she would not know how she could do this once again.
Ken
Post Edited (Kenneth) : 8/18/2006 4:44:07 AM (GMT-6)
I'm a new member with a husband that has been diagnosed with a constrictive pericardium. He has been told he needs a pericardiectomy sometime but not to wait 10 years. He is still able to play tennis but has shortness of breath with exertion. He had a couple of episodes of pericarditis 25 years ago and now has had chronic atrial fib for a couple years. We determined it would be better to get the surgery done now rather than later as health typically gets worse as we age. He has no pain but there is definate calcification and septal shift seen on the CT. My question is what type of quality of life is to be expected post op? What are some of side effects following surgery? I expect fluid retention but what else? We won't see the surgeon until the day before the surgery and could use some real patient feedback. Thanks.
Hi sava, I just wanted to pop in and welcome you to Healing Well forum. We are happy to have you. This is a wonderful site for information and support so I do hope you continue to use us as a resourse. I am sure you will get many responses to your post and wish you and your husband all the best...Take care
I discovered some of the back log of forum postings this a.m. and did some reading. Very informative and helpful. I couldn't find a record of anyone having a maze procedure with their pericardiectomy. Since my husband has had long term a fib this is a possibility. It depends on how well he tolerates the pericardiectomy before the maze will be considered. I also searched for anyone just having a maze and could find no entries. Anyone have any information?
Hi Sava,
I had a pericardiectomy more than one and a half year ago. You may have read some of my posts. I live in New Zealand. I am still alive today. If everything goes well, you husband will make a good recovery. The afib is unfortunate, but entirely due to the constriction, I suffer from the same malady. I now live with a pacemaker.
I do not think that a Maze procedure after or during a pericardiectomy is a very good idea. The outcome is not always good. My cardiologist was entirely against it. Removing the pericardium can do a lot of damage anyway.
Constrictive pericarditis is a condition which will not go away by itself. So sometime in the future a decision will have to be made.
Best wishes
henk
NZ
I had a pericardiectomy more than one and a half year ago. You may have read some of my posts. I live in New Zealand. I am still alive today. If everything goes well, you husband will make a good recovery. The afib is unfortunate, but entirely due to the constriction, I suffer from the same malady. I now live with a pacemaker.
I do not think that a Maze procedure after or during a pericardiectomy is a very good idea. The outcome is not always good. My cardiologist was entirely against it. Removing the pericardium can do a lot of damage anyway.
Constrictive pericarditis is a condition which will not go away by itself. So sometime in the future a decision will have to be made.
Best wishes
henk
NZ
Hi Sava...
Welcome...hope you find the stories here are helpful. I had a pericardiectomy just over 18 months ago as well. Post-op, I have had no complications and have felt great. I do not need any meds other than thyroid medication. I lost a lot of fluid after surgery because the heart could finally pump. I have not heard of the maze procedure...what is it?
Ken...thinking of you and Elvina...how is she doing? Is she awake? I'm glad they are being aggressive with the chest tubes but poor thing :( That was the worst part of the whole surgery for me...I'm praying for you both. So glad you are there and they discovered what was wrong.
Nan
HI All!
My condition is same as earlier. Some pain and discomfort daily. The next step is echo and discussion about pericardiectomy.
Thank you all for your writings, I have now more information about this peculiar disease.
Thank you all for your writings, I have now more information about this peculiar disease.
Kenneth, special thanks for you and Elvina, I really hope she is feeling much better now, I appreciate highly that you both share your experience here. Surgery is every time a risk and I have to think it many times before I make my decision. Best wishes
Tea
Hi Nan,
The surgery was on Wed. She woke up on Thur morning and left ICU in the late afternoon of Fri.
The IV line in her neck was taken out on Sat. We are more comforted to see her less uncomfortable than the first operation but this time she seems more tired and sleepy. She still has the 4 chest tubes. Her heart rate is between 100 to 105 which has dropped from the first day in ICU and is lower than last time. She is not on any beta blocker. Hopefully the rate will come down more and more to the normal as expected and hoped by the doctors.
Hi Sava,
Welcome to this forum. Hope you find this useful and resourceful. My wife and I have got very good information and comment from here. This is a large support group to help us aware that we are not alone and to comfort us when facing different steps of obstacles.
As you may have read in this forum, my wife had pericardiectomy for treating constrictive pericarditis at Mayo 40 days ago. Dr Schaff said if the pericardium was taken completely, the disease should not re-occur.
Possible complications also include internal bleeding and low cardiac output etc. It seems the research suggests early surgery before other things get worse, such as the heart muscle and liver etc, which are irreversible. And most doctors we met said the mortality rate and post-op is better for patients who are less symptomatic, which are classified as NYHA class I to IV.
Right after the surgery, she was suspected to have severe mitral valve regurgitation caused by the heart expansion after surgery. It was later disconfirmed. But there is a rare chance that can develop and that will go away by months, according to doctors and some research I have read.
She had the complications of hematoma and inflammation. The heart functioned worse than before so she had the re-operation few days ago to remove the hematoma. They may give her steriod to treat the inflammation inside.
Ken
Post Edited (Kenneth) : 8/20/2006 3:28:53 AM (GMT-6)
Hi there,
To find out about the Maze procedure go to:
http://www.sts.org/doc/4511
henk
NZ
To find out about the Maze procedure go to:
http://www.sts.org/doc/4511
henk
NZ
Hi all, we have a new member who has posted under a thread called Chronic Pericarditis and has some questions. I was hoping some of you would be kind enough to help her out with some suggestions or advice. I am going to post a copy of her post below. Thank you so much!
AnaG said...Hi,
My name is Ana, and I've had pericarditis for a couple of years now. I actually started having chest pains sometime at the end of 2003, but a Dr from an urgent clinic said I had probably pulled a chest muscle and prescribed an antiflamatory, which seemed to take the discomfort. The pain came back a couple of more times, so I just proceeded to continue taking the antiflammatory. Finally, in October 2004, I got it again but it got so worse I couldn't breath, walk or anything and my weist and feet were swollen.
Once at the hospital, (the pericardium was full of fluid and my left lung as well) they proceeded to perform a CT-guided pericardial drain placement with drainage of fluid. Then I had a left video-assisted thoracic surgery, in which a pericardial window was placed. They took a biopsy, but no definitive diagnosis came out of that, so they concluded it was a post viral illness.
After a month in the hospital, I was discharged.
Ever since, I've paid many, many visits to the ER, Urgent, Dr's office with recurrent pericarditis. They've now diagnosed me with chronic pericarditis, they call it 'autoinmune pericarditis' since I've had arthritis-like symptoms as well.
I haven't been able to stay off prednisone for more than a couple of months, without coming down with it again.
I have read so much about this condition, and still find it hard to give up to the idea that I may just have to live with this forever.
My husband and I have been trying to have children, but with no luck, and being on these medications obviously postpones all of those plans. I can't even hold my little nephew without injurying my chest somehow. My family worries so much,, and that hurts me.
The prednisone works for controlling my symptoms, but it makes me feel miserable with all of the secondary symtoms I get.
Due to my most recent episode (being the worse one after 2004), I've once again being put on disability, and I wish to dedicate the time I now have in my hands to see what else I can look into to recover from this all together one day. I hope I'm not being irrealistic.
Thanks for 'listening'.
Ana
Elisha
Hi Ana,
I have had pericarditis about 4 years now. My medication is azathioprine+steroid+NASAIDs, I hope this works. I think I have tried every possible medication for this disease, this is the last combination. Did you try cholchicine? Some people get help from it. It didn't help me. Next step is perhaps pericardiectomy, but first I have to meet my doc and think it over.
You wrote you have suffered side-effects from the steroid like many others here. My dose is now only 15mg and I hope I get rid of it some day (the sooner the better). My pericarditis is also chronic and maybe the surgery, pericardiectomy, is the only way to get better?! I think there is still hope to recover some day.
Best wishes
Tea
Thank you all for your help. This is an amazing web site with great support. Henk, you said your cardiologist discouraged you from doing the maze along with the pericardiectomy, was that a doctor at Mayo or Cleveland? The Mayo surgeon has not discounted that option. (of course he hasn't seen my husband and is going on the recommendation of the cardiologist). I wasn't sure if all patients are put on bypass for the pericardiectomy?? Can it be done on a beating heart?
This whole surgery thing was a surprise to us as my husband appears to have normal health with the exception of shortness of breath with exertion and thus fatigue which we thought was related to the a fib. The thing pushing us forward is that a constrictive pericardium is progressive and better now than later in regards to recovery from surgery.That is why I was very interested in the long term post op quality of life after surgery. Again, thanks everyone for sharing your knowledge and experiences.
sava
Hello Sava,
I live in little New Zealand, somewhere near Australia in the South Pacific. From here the American planes fly to the South Pole during the summer season. So we are very far away from you.
Here the maze procedure is not being done, because it is regarded as rather experimental and risky. The hope is that in the future it could be done with a catheter instead of open-heart surgery.
Yes a pericardiectomy can be done with a beating heart, it was done like that in my case, but I suppose it depends entirely on the condition of the patient and the skill of the surgeon. But I think in any of the wellknown clinics in the US you will be in good hands.
There is a small chance that after a successful operation the afib will resolve itself, but do not count on it. The longer you have been in atrial fibrillation the harder it is to stop it.
So, I think the prospects of a great improvement after a successful procedure are very good. Fluid retention, shortness of breath and liver disorders will just go away.
By the way I only stayed in hospital for six days. Here also this condition is very rare. But it is more common in countries with people who have tuberculosis.
Kind regards
henk
I live in little New Zealand, somewhere near Australia in the South Pacific. From here the American planes fly to the South Pole during the summer season. So we are very far away from you.
Here the maze procedure is not being done, because it is regarded as rather experimental and risky. The hope is that in the future it could be done with a catheter instead of open-heart surgery.
Yes a pericardiectomy can be done with a beating heart, it was done like that in my case, but I suppose it depends entirely on the condition of the patient and the skill of the surgeon. But I think in any of the wellknown clinics in the US you will be in good hands.
There is a small chance that after a successful operation the afib will resolve itself, but do not count on it. The longer you have been in atrial fibrillation the harder it is to stop it.
So, I think the prospects of a great improvement after a successful procedure are very good. Fluid retention, shortness of breath and liver disorders will just go away.
By the way I only stayed in hospital for six days. Here also this condition is very rare. But it is more common in countries with people who have tuberculosis.
Kind regards
henk
Hello, I am a new member. i was glad to find this forum because there is not very much informamtion on this topic. I had a pericardectomy in 2004 for constrictive pericarditis. I went for almost three years without a diagnosis. By the time i had the operation other organs began to be affected. the surgeon did not remove the pericardium around the diaphram. The operation did not go smoothly. I was in intensive care for about 11 days and in the hospital for a total of 3 weeks.
it appears that most people have returned back to normal after having the operation. after the operation, there was significant improvement. I still suffer from AF and Aflutter but not as often as I did before the operation. i no longer have to take a nap during the day and i can stay up to 11. I also can go grocery shopping. But my stamina is still not what it should be. exercise is still a problem. High heat and humidity are killers for me.
doctors say all three of my valves leak but do not believe it is serious right now. i was a little concerned because before the operation only my tricuspid valve had a minor leak.
since so many people seem to have no problems after the surgery, i am wondering if anyone is still having some problems and should i be hopeful for a full and total recovery. i am better than i was last year and last year i was better than the year before.
Incidently, prior to the pericaridal stuff, I was in "perfect" health.
it appears that most people have returned back to normal after having the operation. after the operation, there was significant improvement. I still suffer from AF and Aflutter but not as often as I did before the operation. i no longer have to take a nap during the day and i can stay up to 11. I also can go grocery shopping. But my stamina is still not what it should be. exercise is still a problem. High heat and humidity are killers for me.
doctors say all three of my valves leak but do not believe it is serious right now. i was a little concerned because before the operation only my tricuspid valve had a minor leak.
since so many people seem to have no problems after the surgery, i am wondering if anyone is still having some problems and should i be hopeful for a full and total recovery. i am better than i was last year and last year i was better than the year before.
Incidently, prior to the pericaridal stuff, I was in "perfect" health.