Pericarditis & Pericardiectomy Posts

Hi Kitt,

Thanks for the welcome. Yes, I have a cardiologist that I go to. However, the surgeon he recommended does not seem to have much experience according to his record (I am relying on New York State Dept. of Health Report on heart surgeons), although he may be a very good surgeon. In the New York City area, we have many good hospitals and heart surgeons, but to find one that is good at pericardiectomy is not easy. Hope I will hear from friends from this forum. Thanks!

Dear Boog and all other friends,

Thank you for your reply and sharing your insight about searching for a possible surgeon. I have made some progress in finding an experienced surgeon. This week, I will meet with three surgeons in New York City to discuss my case with them. I am sure I will find one I feel comfortable with.

As you know I suffer from pericarditis since last March. After an acute attack, I was on put on motrin for 10 days and got better, but the tightness in the chest always exists since then. Until December 2009, I was diagnosed as having constrictive pericariditis. I am having symptoms such as distended veins around the neck, right pleural effusion, tightness in the chest, and swollen face and legs which are still progressing. I am still physically strong and able to maintain my full time job. I have the following questions about pericardiectomy.

1. When is it ripe for the procedures based on your experience as a patient? I have got mixed recommendations. One doctor indicates that I am still physically strong and the symptoms are very mild, while the other strongly recommend for the surgery.

2. If the pericardiectomy is performed, should it be the complete pericardiectomy (i.e., the wide resection of both the visceral and parietal pericardium) or partial pericardiectomy. I read some literature on this, a complete pericardiectomy is recommended; however, it may involve greater risk.

3. I am currently on ibuprofen 200 mg. with nexium. Has anyone ever gone through medical therapy? How long does it take to expect the recovery or does it ever work?

Thanks for your time.

Gary

Hi Boog,

Thank you for taking the time to put your valuable experiences in writing. The information and your experiences have helped me a lot in determining what to do next and also in building a confidence in moving ahead to address this issue with my heart.

I have seen several surgeons in the regions and decided to go ahead with the cardiac catherterization to confirm the diagnosis and get ready for the surgery if needed.

Gary

Hi Boog,

Good to hear from you. I am still going through a couple of tests. Haven't finally decided whether I will eventually go for the surgery. Thanks for you payer and care.

Best,

Gary

Hi Diane and Weclome to Healing Well,


I searched our site and found an old thread that you may find helpful as there is reference to the Cleveland Clinic as well as a Doctor there at the time of the post. I do not know if it is the clinic in Florida but read it with an open mind.There is a post by https://www.healingwell.com/community/default.aspx?f=42&m=833107

Just click on the link.



https://www.healingwell.com/community/default.aspx?f=42&m=833107



I am here to support you and please know I am thinking of you and your husband.



Kindly,

Kitt

mrsbuck,


I am so glad you found us and please do feel free to post and vent your feelings right here. Lots of people read the forum and you are helping others as well as yourself by posting your experience.



You have the right to be afraid as that is natural at a time like this.



Remember this is about you now and you don't have to take on the responsibility of keeping others positive. Lean on them as you will find they are much stronger then you think.



I think you have a good plan in place going to see a surgeon that comes well recommended in your area. I just happen to be from the land of Mayo here in MN and yes we have an awesome facility but there are lots of great cardiac surgeons and they are not all here in MN.


Picturing positive outcomes can significantly reduce apprehension, so start thinking of all the wonderful things you are going to be able to do after surgery. No more SOB, thin ankles and a lot more energy to enjoy your life. I am here for you and I will say a prayer to help you through the fear so know I care.

Gentle Hugs,

Kitt

Dear Mrs Buck,

Hello, my name is Diane and my husband in at the same step in this process as you are. 

His appt with a surgeon is on Wed next week and we also have an appt with a surgeon in the Cleveland Clinic Florida in 3 weeks.

I am sure you are as frustrated as we are with the lack of information on the internet.  I have been pouring over these boards for hope and information.  I am finding the boards very hopeful.

I am getting our list of questions together for the surgeon.  I was hoping we could share our questions.

How many times have you performed a pericardectomy?

What are odds of a sucessful operation?

Will I be on a heart lung bypass machine?

How long is the operation?

What are the most common risks?

Do I have any underlying conditions that will make this operation more difficult?

DO you think I should go to a larger facility for this operation?

I wish I could give you a big hug and lots of hope as I truly think this will be the answer.

Good luck on Monday and if you don't mind sharing questions, it would truly be appreciated.

Diane

Hi Jane,

great questions.  Yes, we often think why wasn't this done 5 years ago when he was 5 years younger.  I guess they err on the side of caution.  But now, the pressures from the catheriztion are more sever than they were 5 years ago and he has moderate kidney failure.  So, please ask that question.  To be fair though, we were so scarex that when they said partial we didn't question it.

It is my understanding tht there is no mesh put in to hold your heart.  Some things I have heard or read was that it , the pericardum was reffered to as " the trash bag the heart comes in".

Last night I was googling on the internet and found a report that listed all heart procedures and the level of difficulty and out of 1 to 5 ( 5 being the most difficult), pericardiectomy is a 2.  I am hoping this is true.

Please keep me posted.  ANd good luck on Monday.  We are hoping to get an appt on Tuesday with Cleveland Clinic- Florida ( but that is a long shot).  We do have our local appt on Wed.

Take care

Diane

Hi Diane. Made it back from the surgeons late last night. Had preops done before driving 3 hrs north to come home. Surgery is scheduled for 7/13. Both my husband and I were pleased meeting our surgeon. People have asked me if I feel comfortable with him. How can one be completely comfortable with anybody right now????? He answered most of our questions before I even asked them. I asked him about the difficulty on a scale of 1 to 5 and he did say about a 2. The thing to realize which makes me feel better is that every cardiac surgeon has to cut the pericardium even before they get into the heart and they don't close the pericardium afterward for procedures like valve replacements or bypasses. He told me that he will be removing the sac (easier to type than pericardium each time OK?), from phrenic nerve to phrenic nerve. He will not touch the phrenic nerves nor will he work between them. His intent is to keep my heart beating while he is working and not put me on a heart/lung machine (or bypass machine as they call it). If my sac is adhered to my heart, which it may be, he may have to put me on the bypass, but not stop my heart. If it is very severe, he will have to stop my heart.....but he says he doesn't believe that's the case with me. After this is done, without the sac, my heart will be touching my lungs and engulfed by my lungs. He said that IF I ever needed cardiac surgery after this, it would be more difficult because when they open me, they'll be right at the heart, no pericardium around it. My heart otherwise is in great shape, no coronary artery disease, no valve problems, so chances of additional surgery are slim. My stroke risk with this surgery is less than 1%, but as the surgery gets to a higher level, if he has to, the rate does increase. As far as how he feels about the facility he is at, he said he would have heart surgery himself there and he would recommend the same. I guess this remains the "unknown". He said this is not "rare" as a rare thing would be some funky disease that was never heard of, this is just "uncommon". I had had some lung issues back 10 years ago, bilateral bacterial and viral pneumonia, I was on a vent and in the hospital for 3 weeks, and he feels that this is more the likely the cause of today's illness. He said my lungs have healed well, but lung trauma can cause this illness. He won't be certain until he sends the pericardium to pathology. I asked him if he had any tapes or reading material on this illness and they had none. So, I guess that's my job.......write down my experience and maybe make a brochure or CD. I got a package today from the hospital for pre heart surgery and what to expect. They discussed bypass, valve replacement, etc., but absolutely nothing about pericardiectomy or pericardial stripping as the doctor put it. He says I will be in the hospital for 4 -5 days, no driving for 1 month, no lifting for 2 months and out of work for 2 months, but we'll review that based on how I feel. He said I can live a normal life after with a normal expected life span. I may be on Lasix for a while afterward and maybe a betablocker. If steriods, probably only for a month or so. He also said my heart would be safe if I got hit in the chest with a baseball. I just don't know. I'm not 100% certain about this. I'm trying to be, what choice do I have? I have no control over why I got this and why this path. I don't know if your religious or spiritual in any way, but I believe I got my message from my Mom and Dad who have passed away. My husband and I decided to stop for supper on the way home after my appt, rather than having to cook. When we sat down at the restaurant, I noticed an older couple behind me. After our meal was done, I heard the waitress say: "and (so and so), how are you feeling" and the gentleman said "I feel great, it's made 1 year yesterday that I had my open heart surgery and it's going well, just a little sore still". After the waitress was gone, I don't know why but I turned around and asked him about his surgery as I will be going thru surgery. He said he had the surgery (valve repair) at the same hospital I will be at. When I asked him who his doctor was, it's my doctor, and they both were so pleased with him and said nothing but good things. So, what are the odds of that. I'm taking it as my sign that all will be ok. Family and friends are saying everything is going to be all right, but how do they know????? So, for today, as I try to get through this waiting period, I'm trying to look ahead to July 17th ish, picturing myself back home and recouping with my new pair of pj's and a soft blanket and pillow and my cats curled on my legs and my husband getting me soup or water or anything. I'm looking forward to my time back home. Have to...cause that's where I'll be. Any news or your end yet? Please keep me posted and we can help each other, as there aren't that many pericardium patients around. Thinking of both of you, and wishing the best for you at the appointment tomorrow. Positive thoughts. -Jane

Jane,

Thank you for this wonderful post.  It is really a great relief to us.  Our first appt with the local surgeon is tomorrow.  We are meeting on Thursday with a surgeon at Cleveland Clinic- Florida ( about and hour and a half  drive)

Today we saw my husband gastroenterologist to get the results of the paracentesis that he had last week.  this was the fluid removal in his abdomen.  The results were consistent with the need for a pericardectomy.  The doctor asked which surgeons we were meeting with and he knew the local surgeon and said that is who he would go to for a heart operation.  He said not to get too updset over this operation that everything will be fine.

In addition, my husband had a long chat with his primary doctor who said unless the Cleveland did many more pericardectomies than the local doctor to stay local .  Both for the local doctors reputation and that it is better to have your record locally in the event of any future complications.

I think I must be alot like you, and I am always looking for signs. I would agree that the couple at the restaurant was a sign from above. 

I was surprised that your surgery wasn't until July 13th.  Did you request it to be that far off.  I was thinking this would be over next week.  The stress of waiting gets to me.

I have a question for you.  My Husband creatine levels are 1.72.  The doctor says that that is mild or moderate kidney failure.  Do you have this also?  I don't remember this 5 years ago when he had the window, but back then we weren't keeping lab results like we do today and I can't check. 

I will post tomorrow when we get home.

Thanks for sharing and keep positive.  The more I hear the better I a felling about this surgery.

Diane 

Hi Jane,

Today we met with our local surgeon.   The Surgeon met with us for close to two hours.  He feels that the pericardectomy is not the only problem with my husband.  It seems his loft side of the heart is also being affected and that is not consistant with constrictive pericarditis.  He said that he would like us to go to Cleveland Clinic for an evaluation in the "Pericadial Institute". 

AS for the operation, he gave us the pros and cons of going Cleveland or a major teaching hospital or going local.  We felt totally confidant in having him do the operation when we get to that point. 

He said it is not a difficult operation although he has only done 2 pure pericrdectomies.  He explained that every open heart operation involves opening the pericardium.  He also explained that if we should have the operation at Cleveland, they discharge you to a local physician for the follow up care and he would be fine if that is what we choose.  He has requested a Cat Scan to take to Cleveland and had the hospital make copies of the CT scans from 2005 and the first operation.

I can really understand how relieved you must have felt after meeting with your surgeon. They have a way of instilling confidence.

Tomorrow we go to Cleveland Clinic - Florida and we will get that surgeons opinion.  Also, we are hopeful that he will be able to facilitate our way into Cleveland Clinic in Ohio.

Whew!  Alot , but at least we are moving on.

Take care

Diane

Hi Jane,

Another rollercoaster day!

Cleveland was wonderful. The surgeon met with us inbetween surgeries. Normally they only have patients on Tuesdays, but fit us in today. The surgeon met with two cardiologists and reviewed the records. They think that in addition to the pericardectomy, he needs a tricuspid valve replacement. They will do this at the same time. There is a possibility that the valve will not need to be replaced and only a pericardectomy will be needed. HE said the pericardectomy is not a complicated operation and would take 2 hours. With bot the operation would take 5 hours. He really said alot of what your surgeon said. That is so comforting. We will find out tomorrow when the surgery will be.

When we got home, there was a phone message from the local surgeon. HE still feels that there is something else going on, and is researching it.

At this point there is 6 heart doctors involved and 5 think it is pericardectomy ( with maybe something else) and one thinks it is restrictive. I hope not since that seems not a very good thing to have. I think we are talking transplant and I think my husband at 62 is too old.

Oh well, next step two cardiologists neeting next week ( local) and getting the date for surgery.

Take care and thanks for letting me vent.

Diane

Please be patient with me. I really could use some feedback on this. I have been diagnosed with mild constrictive pericarditis but find that I am having difficulty with air travel and places that have a little altitude like Lake Tahoe. Do you have similar difficulties with air travel or altitude? I tried a separate post but nobody with constrictive pericarditis replied.