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Pericarditis & Pericardiectomy pt. 5

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Posted 7/12/2006 3:14 PM (GMT 0)
Kenneth, it is fine that Elvina has so large support group, a family. Support and sharing helps healing. I hope Elvinas condition is better now.   My very best to Elvina and You too.     John, thanks again for your comment to me. I wrote indistictly in my last post, sorry. I have had extra fluid almost all the time, about 3-4 years, that is causing the pain.   At first it healed itself or with rest, then I needeed medication. So now   I’am in this situation: steroids+ azathioprine. My pericarditis is chronic, but now I hope this medication works and it kicks the fluid and the pain away.   I am now in quite good condition. It sounds good that you don’t have any more extra fluid, hopefully the pain goes also away with time.     Nan, its great that you can ask about the hypothyroidism in your 18 month check, I hope everything is alright with you. Thanks for sharing your experiences with us, you really support many ways others here .
Posted 7/12/2006 3:31 PM (GMT 0)
Hi Ken...

Sounds like Elvina is getting the best care possible right now in ICU.
I plan to be in Minneapolis this Friday and I would like to meet you and see how Elvina is doing since I think Rochester is only about 80 miles away. Maybe we can meet down in the lobby of St Mary's Hospital or in the ICU waiting area if allowed.

John
Posted 7/13/2006 1:17 AM (GMT 0)
I am brand-new here and wrote a pericarditis-related post as an independent thread. Should I have posted it as a reply to this thread instead? I apologize if I did this wrong.

AmyDB
Posted 7/13/2006 11:38 AM (GMT 0)
Hi AmyDB!   Welcome here. Sorry to hear of your sons dilemma, pericarditis is an insidious disease. Chronic pericardial pain and other symptoms makes energies very low. I’m also a mew member and I’m seeking information about pericarditis and Azathioprine. My pericarditis is idiopathic recurrent pericarditis. I suppose this Imuran contains azathioprine. Before this medication I have tried   "wait-and-see", anti inflammatory drugs, colchicine, steroids and some combinations of those drugs. Now the newest one is this azathioprine + prednisone. Could you answer some questions? How long have your son taken this combo: Imuran+prednisone? I have tried azathioprine + prednisone only about 3 months and I am still waiting how this combo is gong to work out. Some people gets help from colchicine, did your son tried that already? It did relief the pain and discomfort, but I didn’t heal me. Prednisone has been the best drug, but it has also nasty side-effects as you wrote and   I have been trying to get rid of it, the dose is now 7,5mg. My doc said, if these drugs don’t help, the next move is pericardiectomy. Did your sons doc suggest this operation too?    Pericardiectomy is not an easy decision, but maybe it is the next step in my situation also.   I try to see it as a chance out of this pericardial disease. Before that I hope this newest medication works.   I have had a great help about this forum, also older writings. Read previous Pericarditis & Pericardiectomy threads, there are good advice about the best docs and clinics and   in the U.S.     I  wish you and your son All the best!   Tea
Posted 7/13/2006 12:04 PM (GMT 0)
Welcome AmyDB...

Sorry to hear of Williams's struggle with recurrent pericarditis. I found and read your independent thread, maybe the modurator Elisha can bring it over to this thread.
I can understand William's frustration with pericarditis. My personal experience is that this medical condition does not get enough respect from doctors as most are simply not familiar with it. It is extremely difficult to diagnose unless the disease has progressed to a point of no return ie... a pericardiectomy becomes the only option.
I have had my pain for over a year and seems to have progressed from an acute to a chronic pain. I am currently managing it with colchicine and naprosyn but it does not completely take it away. I still feel the chest pressure especially upon deep inspiration. I have seen Dr Klein at the Cleveland Heart Clinic who specializes in pericardial disease. I have also been to Mayo clinic in Rochester, MN with Dr Oh most recently and Dr Mookhadam last year but he is now in the Arizona Mayo location. If you are considering a pericardiectomy for William then I would suggest either of these two clinics as they appear to have the most experience with this kind of surgery.
Has William had a CT scan and was there any abnormal pericardial fluid present? Are any of his tests diagnostic? My EKG can be intepreted as somewhat abnormal but aside from that every other test is normal which I should make me happy but ironically I am more frustrated as I am the one still feeling the pain and I know it is coming from the pericardium but I am not showing any visible symptoms. I imagine that is the case with William as he probaly just wants this to all go away and live life as any 23 year old should, pain-free.



Ken...

How is Elvina doing? Hope you and the other family members are holding up as well.


Tea...

How did the doctors detect the extra fluid? I think only a CT scan can reveal small amounts. Did you have a scan recently?


John
Posted 7/13/2006 2:08 PM (GMT 0)
Hi John!   I have been in the CT scan about year and a half ago. Instantly after CT doc ensure diagnosis with echocardiogram. In this year I have been two times in the echo. My cardiologist said that the echocardiogram is good at determining if pericardial effusion is developing. From the echo, doc can estimate the amount of fluid that has accumulated. If I remember right I had last time extra fluid for example toward the apex of the heart. I’m irritated because I can’t exercise at all. Perhaps I ask too much too quickly, healing is a slow process. How are you doing? Tea
Posted 7/13/2006 9:05 PM (GMT 0)
Tea...

I have had so many echocardiograms done I have lost count but none of them were able to detect the fluid. Only the CT scan was able to reveal it but I could feel it last year wheras I cannot this year. I remember trying to explain to the doctors that my heart felt swollen and standing up made it worse as if gravity took hold. I was light headed and felt pain at my left hip and numbness in my legs. I had a fast heart rate but the chest pain was manageable when sitting down. Currently I feel stiffness in my chest area and pain upon inspiration. Every now and then, I experience some breakthrough shooting pain and pericardium rubbing/burning feeling. My doctors want me to exercise as well but it is uncomfortable because I feel like a rug is laying on my chest the whole time.

John
Posted 7/13/2006 10:40 PM (GMT 0)
John - Elvina left ICU yesterday.  Thanks for your regards.  She is making progress but most of the time, she is tired and sleepy.  Think she may not be good enough to see and talk to you tomorrow yet but I am happy to meet you in St Marys hospital. 

I got your email address and will return your email with my contact.

Nan - I will also return your email.  See you.

Ken

 

Post Edited (Kenneth) : 7/13/2006 10:47:14 PM (GMT-6)

Posted 7/14/2006 3:31 PM (GMT 0)
John,   I’m sorry about your symptoms. The wait-and-see-how-the-medics-work-out is supposed to be the only way to heal this disease. Patient needs also patience, it is not always easy to wait as we know... As I did earlier write, I have only the “classic” symptoms of recurrent pericarditis: sharp chest pain, sometimes it radiates also to the back, movement can aggraviate it too, fatigue… I know CT-scan shows the normal thickness of the pericardium and it can’t   miss significant calcium deposits. I though CT scanning provides specific anatomic details of the entire pericardium and so it can ensure the healing process when it shows that there is no extra fluid. If the pain still continues it is a heavy situation for the patient.   In every echo or other scans (CT, MRI) all the information are saved in the computer so the doc(s) can verify the information. This information includes also facts about the heart ( size, function etc.)   I have noticed, that docs rely more on examined facts, than what the patient says or feels. I understand that’s the way medicine works. I think my doc looks all the hard facts and then also listens my feelings about this disease. I quess your or mine doc(s) can’t do anything more right now.   Tea    
Posted 7/15/2006 8:54 PM (GMT 0)
This is the fifth day after the surgery. Elvina is improving. The most difficult time was the first two days right after the ICU because of the legacies from surgery, the side effects from medication and the body reactions to the foreign things like the tubes and IV lines. The bad feelings include nausea, sweating, freezing, fever, pain, tired and sleepless etc etc. Some of them were gone and some of them are fading out so she is feeling better.

She still has one chest tube. If the chest x-ray looks fine, it is likely to be taken out today. The earliest time for her to get discharged is two days later if she keeps improving. That's her hope and I pray for that.

Her heart rate is 100 to 110 because of the irration during the surgery. We were told that it should be back to normal in weeks time. Did anyone of you have similar experience after the surgery?

I noticed that she still has jugular vein distention on her right neck. Recalled some of you had that disappeared right after the pericardiecotmy and some of you had that disappeared in months time? Please share your valuable experience again.

Is cardiac rehabilitation very useful?

Ken
Posted 7/15/2006 10:08 PM (GMT 0)

Hi Ken...

I still had JVD while I was in the hospital and we had fun watching it go down like a barometer at home.  Took only a couple of weeks for it to be totally gone.

It will be great when she gets that last chest tube out.

I would recommend cardiac rehab.  I wish I would have had that.

Give our best to Elvina.  We'll see you Monday!

Nan

Posted 7/16/2006 4:31 AM (GMT 0)
Hi Nan,

Thanks for your sharing. The last chest tube was just out tonight and she now feels much better. This is the first day we have seen her able to smile since the surgery. So it is very encouraging.

Ken
Posted 7/16/2006 7:58 AM (GMT 0)
Kenneth,   it is so great to hear that Elvina is feeling much better! Best wishes and much strength!   Tea 
Posted 7/17/2006 1:11 PM (GMT 0)
Ken...

It was a pleasure to meet you and Elvina.
Knowing that she has such strong family and friends support is comforting to Elvina I am sure.
I am glad the doctors took the last tube out, it was probaly irritating her. She looked good and will only feel better as her body starts to heal and get stronger.


Tea...

You are lucky to have a doctor that not only looks at the facts but listens to you before making a judgement.
I am sorry that you are having pain even with the medication but it would probaly be worse if you were not taking anything at all. I hope the azothiaprine works for you and without any side effects.


John
Posted 7/18/2006 7:35 AM (GMT 0)
John - Thanks for your visit. It was nice to meet you too.

The discharge is delayed to be Tue. Elvina had an echocardiogram this afternoon. The doctor ran through the result with us. We might not have got the whole story and will get that clarified tomorrow when seeing Dr Schaff. The result I understand is that everything looks fine except that a heart valve does not close tightly (mitral valve regurgitation) because after the pericardium was removed, the heart now expands much more. This is the negative part we did not expect prior to the surgery.

The doctor said this happened in a small percentage of patients who had pericardiectomy. He said the current more optimal heart pressure would make the heart muscle become more efficient, and that should then make the valves close tightly. He said this should take months but Elvina has doubt on the adaptability of heart muscles and the time frame.

In the meantime, she needs to take diuretics daily to relieve fluid accumulation in lungs and legs, which may be the first symptom accompanying mitral valve regurgitation.

Anyone developed mitral valve regurgitation or similar valve problems after pericardiectomy?

Ken
Posted 7/18/2006 7:55 PM (GMT 0)
Dr Schaff did not stop by today but the physician assistant ran through the echo report with us. It says moderate tricuspid valve regurgitation and moderate-severe mitral valve regurgitation. Now we worry this new problem and pray that it will really go away soon as the resident said. The resident said this is the same message from Dr Schaff but I think Elvina would be more comforted if she heard this from the mouth of Dr Schaff and if we were told more about any statistical numbers. (Nan - Thanks for your visit with Chris yesterday. It was actually the perfect timing right after we got this bad news from the resident. She was comforted after speaking with you.)

She was just discharged this morning.

We scheduled a follow-up consultation with Dr Nishimura two days from now, and look forward to hearing his opinion.

Ken
Posted 7/19/2006 4:52 AM (GMT 0)
We are glad to have Elvina back from hospital. She feels much better breathing in fresh air and has her own life without being put on all the tests every day during hospitalization.

We found three articles in PubMed when searching "mitral regurgitation after pericardiectomy" under Google. Because we have no access to PubMed articles, we can only see a very short summary of the article. In one article, they reported that 1 patient took 4 weeks to have the mitral valve back to preoperative condition and another article reported 1 patient took 13 months.

Please let me know if you have read something like this from any research article or books. Many thanks !

Ken
Posted 7/19/2006 11:48 PM (GMT 0)
 

Wow! For the first time...a place where someone has actually heard of this condition. This is helpful just to know we are not insane. Thanks so much to all of you for sharing!

First, I apologize ahead of time for my poor spelling of drug names.

Anyhow, in answer to Tea and John - Our son had been unable to get below 25-30mg of Prednisone consistently before the introduction of Azathioprine (imuran) a number of months ago. Colchine, indocin, methotrexate, advil, motrin, etc., did nothing.

Imuran has allowed him to dip as low as 15mg prednisone - though he has had one relapse at that level. Since then, his imuran has been increased from 125 to 150mg. It's too soon to know the impact of this increase. For now, he remains on 20mg prednisone.

He had a pericardial window put in in late 2000. He has not had significant fluid since then during replapses - though his pain is significant.

He has seen Dr. Klein in Cleveland - though only once specifically for support in prednisone elimination - not for a more thorough evaluation. He has also been to Johns Hopkins, University of Pittsburgh, Pittsburgh Children's, Pittsburgh Mercy on the cardiology side as well as Pittsburgh Mercy and Cleveland Clinic on the Rheumatology side. He has been tested for just about everything with no luck.

There is a maternal grandfather with severe arthritis but no evidence is seen elsewhere in Bill's body that this is related.

One question on the pericardiectomy front - does anyone know if these ?new? CT scans with "3-D reconstruction" provide any insight into whether or not constrictive pericarditis has occured?

Finally, has anyone heard of something called the ?perducer? that supposedly helps with this illness?

AmyDB 

Posted 7/20/2006 12:58 AM (GMT 0)
AmyDB,

I don't know about the new CTs scans you mentioned but Elvina had the CT scan this year and it clearly shows the calcification in pictures. If there is no calcification, I think only the cardiac cath can tell the constriction by looking at the pressure in the 4 chambers. As some of people in this forum mentioned, the MRI may not be able to show the calcification. Elvina has done 4 MRIs in the past 10 years; the latest one was last year and it did not show any calcification but the CT scan shows it this year. All doctors said there is no way it could be developed to be that thick in a year time.

Ken
Posted 7/20/2006 2:11 AM (GMT 0)

Hi!

Ken and Elvina...it was so great to meet you on Tuesday.  I'm amazed at the community of this forum.  I'm so glad I got to sign your heart pillow :-) Elvina...you look great...way better than I did at that stage.  I was impressed how easily you were moving around.  After we left, I was thinking and I had that dry cough too.  I had forgotten.  I would be encouraged by the article summaries that you found Ken, that the regurgitation resolved itself.  You will definitely feel better after talking to your doctor tomorrow.  Congratulations on being discharged!  That is so wonderful. 

I got great news on my visit.  My echo is totally normal now and I don't have to go back!  I'm no longer a cardiac patient...wow, I really can't believe it.  I'm very thankful.  What a long road.  One thing my MD said that was so surprising to me was that my pericardium was 13mm thick in some places!  I had no idea it was that thick.  He seemed amazed.  So that's more validation that I really did have to have that surgery :) in case I needed any more validation.

Still waiting to hear about my thyroid stuff...they had to take more blood on my way out the door.  I brought your info Mister S...it was helpful.  I should hear tomorrow. 

Amy...I had the pressures of my heart tested by a specialized echo...confirming CP. 

All for now...get some rest Elvina...and use your breathing thing... :-)   You look great, I felt fortunate to meet you both!

Nan

Posted 7/21/2006 3:09 AM (GMT 0)

Nan,

Both Elvina and I were glad to hear that your echo is totally normal !

We saw Dr. Nishimura for follow-up today. He believes the echo was interpreted wrong. The mitral regurgitation should be mild instead of moderate to severe. (As I know, mild valve regurgitation after surgery is not alarming.)  He said her current symptoms of shortness of breath and high heart rate should be due to fluid overloaded around the heart and lung, and that can be treated by having Lasix and hospitalization.  He sounded calm and very confident.  When I told him that Elvina has been worrying a lot since knowing the echo result three days ago, he said, "no worry, put your faith onto me."  She is now more comforted.

She was re-admitted to have IV diuretic (Lasix) for reducing water retention and to be monitored on her heart rate, chest X-ray and blood tests etc. Dr Nishimura said her EKG actually looked good. She is expected to stay in the hospital for a couple of days.

I will keep you posted on how she is doing.  Recovery path is not easy and I just need to pray for her everyday.  (A chaplain stopped by her room and prayed for her today.  When he saw your signing on the pillow, he asked whether we came from your city as that appears on the pillow.  He is from the same city.  When we told him we had friends coming from there to see us, he was very surprised.)

Again thanks for your encouragement !

Ken


Post Edited (Kenneth) : 7/20/2006 9:16:48 PM (GMT-6)

Posted 7/21/2006 5:28 AM (GMT 0)
Hi everybody!   Thanks John again for your comment to me. I hope also yours medication helps you too.   AmyDB, I was also astonished when I found this forum: people really knows what they are talking about . I very sorry about your son’s condition. It is good that a zathioprine + prednisone helps a bit. My doc said that the next step is pericardiectomy and it will solve the problem with the pain finally. I haven’t heard about that “perducer”   you mentioned, what is it?   Nan, congratulations, you are healthy!!! I it so nice to read here also about success, this gives hope. I am looking forward to hear more about this hypothyroidism.   Tea
Posted 7/22/2006 1:38 PM (GMT 0)

Ken...

I am glad to hear Dr Nishimura was able to comfort Elvina with his updated assessment. I can only imagine how low she feels as I felt weakness, lightheadedness, etc. in addition to pain last year and my CT scan only indicated minimal fluid. But now that the fluid is gone, all my symptoms are gone except the pain and pressure.  Once the fluid disappears Elvina will feel better. For some reason when there is abnormal discomfort around the heart it can really depress a person. Fresh air is invigorating. I also seem to breathe better with less pericardium chest pressure when I shower. Perhaps the pericardium relaxes and tightens depending on one's activitiy.

Amy...

The scans can reveal thickness, calcification and fluid which can lead to constriction but only a heart cath where the chamber pressure can be measured is diagnostic of true constriction. But for pericarditis pain without constriction, a pericardiectomy may or may not be recommended by doctors depending on how aggressive they want to treat it. The consensus though is to try and avoid or eliminate long term steroid treatment. Hopefully Bill can be tapered off the prednisone. Does he experience sharp, throbbing, or squeezing pressure type pain?

WHy was he tested in Rheumatology, is there some link with the pericardium??

Nan...

Congratulations on your normal echo! Sharing your success story is hope for all of us and great  to hear. Unfortunately I did not get to meet you as I visited with Elvina and Ken on Saturday. Please email me as I would like to ask for your thoughts on my pericarditis. Thanks.

John

Posted 7/24/2006 5:28 PM (GMT 0)
Hi,

Elvina was discharged (again) yesterday.  She continues on diuretic pill (Lasix), pain medicine (oxycodone), and calcium channel blocker (verapamil for lowering heart rate from fluctuating high numbers of 100-130 to now 95-100.)

She has low-grade fever since discharge yesterday, ranging from 100.2F to 100.8F.  She is taking tylenol and hopefully the fever will not sustain otherwise it may be something alarming?  It has been 13 days since the surgery.  Did anyone of you have fever post-discharge after pericardiectomy?

Ken

Posted 7/29/2006 10:47 PM (GMT 0)

Elvina still has low-grade fever, and according to Dr Nishimura, the water retention was not reduced that much as expected though she does not look like swelling and actually she lost a bit of weight after surgery.  She now takes a higher dose of diuretic pill (Lasix).  If the fever still sustains after this weekend, she will have chest X-ray, blood tests and TEE early next week to check whether there are any other problems.

Christine - Recalled you were the most recent one before Elvina having pericardiectomy at Mayo, and you were struggling with some legacies after the surgery.  It has been almost 3 months for you.  Hope everything is fine with you.

Ken 

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