Pericarditis & Pericardiectomy pt. 5

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els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 6/30/2006 7:53 AM (GMT -7)   
Hi everyone...I am starting a new thread for you all as the other one is getting a bit long.  I hope everyone is doing well :-)   Take care

Elisha

http://www.healingwell.com/donate


 


John99
Regular Member


Date Joined Jul 2005
Total Posts : 80
   Posted 7/2/2006 1:16 PM (GMT -7)   

Tea1234...

Sorry to hear of your recurrent pericarditis. It sounds like doctors have tried almost everything. This is the first time I have heard of using azothiaprine which I believe is an immunosuppresant. So I suppose your physician feels your pericarditis is somehow caused by your body attacking itself?

I am currently on naprosyn 375mg twice a day and colchicine one a day. It manages my pain but has not eliminated it. I have had CT scans that show no constriction right now but when I take deep breaths I definitely do not feel right. What symptoms do you have?

cool  John

 


Tea1234
New Member


Date Joined Jun 2006
Total Posts : 19
   Posted 7/3/2006 3:41 AM (GMT -7)   

John99,

thank you very much for your answer to me.  :-)  I know my doctor(s) have done their best and I hope I’ ll get help when this azathioprine is going to work functionally. My pericarditis “origin” is idiopathic. I have had all the basics: CT scan, MRI, many echos and EKG's. I have tried different kind of medications. I have not any constriction (yet), but the pericarditis is still going on…  Sometimes I think this “alien” has its own life inside me sad .

You are right that azathioprine is an immunosuppresant and my cardiologist thinks that maybe my body is attacking itself as you wrote, but it is only a good guess/theory, nobody really knows what is going on.

Prednisone + azathioprine works well, but  I have still quite easy this typical sharp chest pain, it often intensifies when I lie down.  Other symptoms: an overall sense of weakness or feeling sick,  I can’t exercise, I get tired easy etc. I have now holiday so this is easier time for me, I can rest whenever i want :-) .

Sorry to hear about your pain. Is it this same sharp chest pain ? What is your diagnosis? I hope you have a good doctor, mine is great!

Take care!

Tea


John99
Regular Member


Date Joined Jul 2005
Total Posts : 80
   Posted 7/4/2006 9:32 PM (GMT -7)   
Tea...

My diagnosis was recurrent pericarditis last year but this year I saw Dr Oh at Mayo in Minnesota. He acknowledges my pain but my blood work, CT scans, MRI's, and echos are normal. Only my EKG is abnormal but the cardiologists cannot confirm pericarditis only on one test as they say some people always have an abnormal EKG. My CT scan revealed minimal fluid in my pericardium last year but this year I am clear. My theory is that my pericardium was damaged from the fluid buildup and now I have chronic pain and pressure in the chest or back areas which are unlike the sharp pains I experienced last year.
My pain can come and go without warning and laying down no longer causes pain unlike last year when I had the fluid there would be pain when I bent over or laid back. My concern is that I will go through a period of chronic pericardium painful rubbing that can eventually lead more pericardial damage and/or constriction. Dr Oh actually said that if my pain cannot be managed he would rather I consider a pericardiectomy than take prednisone as he feels it is impossible to taper off steroids. What a dilemma?

John

Tea1234
New Member


Date Joined Jun 2006
Total Posts : 19
   Posted 7/5/2006 9:57 AM (GMT -7)   

Hi John!

 

I have had some amount of extra fluid in all those: CT scan, MRI and echos. Last time in echo it was near normal, but I still have pain and some other symptoms left. My pain is “typical pericardial pain”.
What did your doctor said about your own theory about the pain? Did he explain what kind of damage can this chronic pain or rubbing do? I have had this pain about three years. I tried colchicine about one year, but it didin’t work. The steroids are not very good thing, because after them the pain gets easily back and they might have some nasty side effects, but I have had some breaks with the pain when I used them. I also want to try all this medic choices before the big decision, surgery.
We, doc and me, have had some short discussions about pericardiectomy and maybe it is the next step in my situation. Hmmm,  before that I really hope this newest medication rocks. :-)

This indefinite disease is not an easy situation. Sometimes I’m quite frustrated, but then there are days I am like used to it. I hope you have also good days in spite of the pain and worry.

I think this forum is great. Most of the writings concern constrictive pericarditis but they also give useful information about pericarditis. Many thanks for all writers and HW!   cool  

 

Tea


Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/5/2006 5:57 PM (GMT -7)   

Hi Everyone - As scheduled, we arrived at Rochester on July 3rd and we had a great day yesterday watching the fireworks here.

We saw Dr. Nishimura today and Elvina has gone through tests today: chest X ray, blood tests, electrocardiogram and echocardiogram. She needs to go through a cardiac catherization tomorrow.  And on Friday, we will see Dr. Nishimura and Dr Schaff before the scheduled surgery next Monday.

Hi Nan - I recalled you did not have the cardiac catherization?  Just the echo is good enough to catch the constrictive pericarditis?

Ken

Post Edited (Kenneth) : 7/6/2006 5:44:30 AM (GMT-6)


Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/6/2006 7:23 PM (GMT -7)   
Things are going as scheduled at Mayo. Elvina had the cardiac catherization today. This was the 4th time she had done in the past 10 years but this is the first one that she could get out from bed after 2 hours of the procedure and take some slow walk. They said they are using new technique so that patients do not need to lie on bed for 12 hours.

Elvina has constrictive pericarditis, and partial anomalous pulmonary venous drainage which is a congenital heart problem that makes the case more complicated. We will see Dr Nishimura and Dr Schaff tomorrow. Ken

John99
Regular Member


Date Joined Jul 2005
Total Posts : 80
   Posted 7/7/2006 1:02 PM (GMT -7)   
Hi Kenneth...
Appreciate the updates, glad to hear things are moving along smoothly. You stated Elvina has had cardiac catherization performed previously but were they not diagnostic of constriction? Has she had symptoms for 10 years already?
I just returned from Mayo 3 weeks ago and the CT scan was fine in fact better than the one last year which revealed minimal fluid. But I have chronic pericardial pain that I try to manage with pain pills. I have been dealing with this since spring of '05 but I have had pericarditis attacks in the past.
Did Elvina have chronic pericardial pain during this past 10 years?
She sure is lucky to have good support from you and the rest of the relatives.

John

Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/7/2006 9:13 PM (GMT -7)   
John,

Elvina had cardiac catherization just 3 months ago in Hong Kong and it was diagnostic of contrictive pericarditis. The doctor here wanted that to be done again to rule out any other problems especially related to myocardium. After the cath was done yesterday, we were confirmed that constrictive pericarditis is the major problem that has to be treated, and the anomalous pulmonary venous drainage may or may not be fixed during the operation as it is regarded as insignificant.

She started to have symptoms 3 years ago but 10 years ago, when we were in New York, doctors knew there was a problem from her test data but could not reach a conclusive diagnosis.

We suspected she had constrictive pericarditis when she was a child as she frequently got fever and the jugular vein distention started in her childhood.

She does't have pericardial pain but has shortness of breath and palpitation.

The cardiac cath result suggested that she is in heart failure condition and doctors recommend pericardiectomy. As scheduled, this will be done by Dr Schaff next Monday.

We are still in some emotions as this will be her first surgery in the life time. Dr Schaff mentions mortality rate of 1% to 2% in her case. Pray things go smoothly.

Thanks for your regards.

Ken

John99
Regular Member


Date Joined Jul 2005
Total Posts : 80
   Posted 7/8/2006 5:51 AM (GMT -7)   
Ken...
Mayo clinic has the world's most advanced techniques and if you have traveled this far you know Elvina has the best chance here. I will pray for her to do well with the pericardiectomy. Keep us updated on her recovery.

John

Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 7/8/2006 7:54 AM (GMT -7)   
I had about given up on determining what is currently wrong with me. My head is still reeling from a very, very strong tratment with steroids (dexamethasone). (Had some psychosis as a reaction to the steroids)

I had a heart attack and stroke 3 years ago. I have had 8 cardiac caths since then and 4 stents. 2 were placed this March.

My latest problems began in May, when I suddenly developed a severe reaction to an ACE inhibitor, that I had been taking for 3 years. I had severe respiratory difficulties and the notorious dry cough. I stopped this medicine for 4 days and got better.

I started having angina, and believe you me, I thought I knew what it was but, I went for another cardiac cath about a month ago. All looked good to my surprise.

about 3 weeks ago, I started having severe muscle and joint pains, in addition to extreme chest muscle/lung pain. Fatigue....

The doc suggested rheumatoid arthritis. Gave me steroids and antibiotics. Said RA could invade the heart and lungs or any other organ.

I just read where radiation to the heart can cause pericarditis. I have had so much radiation due to all of the caths and coronary ct scans, within this past year.

I will see my cardio next week. My BP is not under control. It was medically controlled (beta blockers and ACE) at around 125/75. It has averaged 150/96 for a week or so. I am going to increase the beta blocker today.

I am having bouts of agonizing, spasming chest muscle pain with so much pressure inside of my chest that it feels like it could explode. My lung capacity is reduced greatly at times.

My question; do the muscle aches and joint pain sound familiar to any of you?

I have seen a Rheumatoligist and he has diagnosed me with arthritis of unknown origin, until he looks at new bloodwork. My wbc count was high 2 weeks ago.

I would really appreciate any information that could shed some light on what all this means :) Sorry to be so long.

Rj
 
P.S.  Funny thing is, with all of this chest pain, I am not worried about another heart attack at all since I was "clear as a bell" on my last cath 1 month ago.

Post Edited (Aldo) : 7/8/2006 8:58:18 AM (GMT-6)


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/9/2006 11:02 PM (GMT -7)   

Hi Kenneth and Elvina

You'll be in my prayers tomorrow.  Dr. Schaff saved my life 18 months ago...you are in good hands.  Ironically I'll be there next Monday (17th) for a recheck.  If you are still in the hospital and interested in meeting, post on this site and I'll come over and wish you well.  Other than the instability of the sternum right away, recovery goes so fast and it is such a relief to get rid of the symptoms.  Soon you'll be on the other side of this.  Tonight I suspect you've got the pink soap and the nose goop out getting ready :)  You are wise to travel to a facility where they are familiar with the procedure.  I'll keep all of you in my prayers for a successful surgery.

Nan


Tea1234
New Member


Date Joined Jun 2006
Total Posts : 19
   Posted 7/10/2006 1:58 AM (GMT -7)   

Hi Kenneth and Elvina. I hope everything is all right. I'll keep both of you in my prayers.

 

John,
could your pericarditis be called as “dry pericarditis”? You wrote you did not have any extra fluid in your pericardium at the last test, but you still have pain left. My doc explained that this dry pericarditis is one kind of a pericarditis. My idiopathic pericarditis is a
pericarditis with effusion, I have had some effusion in every control. I hope your medicine will help you.

 

Aldo,
my sharp pain comes “deep” inside me, just next to sternum. T
he muscle aches and joint pain are not familiar to me, (they sounds like Costochondritis or Tietze syndrome, but this is only a wild guess, I’m not a doc). I hope you get soon help from your doctor.

 

I still hope someone will wrote experiences about azathioprine and pericarditis…

 

I read previous threads about pericarditis and pericardiectomy, people wrote about hypothyroidism. Is  there really a link between hypothyroidism and pericarditis/pericardiectomy, did you ask a doc about that  thing? I hope I express myself right, english is not my mother language.  :-)  

 

Best wishes to everyone!  Be well!


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/10/2006 11:07 AM (GMT -7)   

Hi...

I'm going for my 18 month check next week and I do plan to ask about the hypothyroidism.  I'm looking forward to getting some info on that.  I'll be sure to post what I find out!

Nan


Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/10/2006 12:34 PM (GMT -7)   
Elvina was put on heart lung bypass machine 30 min ago.  (The family is at waiting room area and the nurse keeps updating us the progress.) Pray she is doing fine and the surgery will be successful.
 
Nan - When I know where she stays after the ICU, I will let you know the room number.  Look forward to seeing you !!!  Thanks.
 
Ken

Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/10/2006 12:57 PM (GMT -7)   
Hi Kenneth...

You guys are in my prayers. I was on bypass for 32 minutes as well. They are good there.

I'll look for your post. Maybe we can meet next week.

Post back when you have time, we're all thinking of you and wondering how it's going!

Nan

Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/10/2006 1:28 PM (GMT -7)   
Hi Nan,

The bypass was just off. The surgery was done and they are "closing it up".

Dr Schaff will come out and speak to us around 4:30 pm. Any specific questions you think we should ask?

Thanks for your support. It is amazing how we feel connected to you without meeting each other.

Ken

Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/10/2006 7:57 PM (GMT -7)   
The surgery on Elvina was done successfully. Surgeons performed pericardiectomy to remove the whole front part of pericardium, and fixed the partial anomalous pulmonary venous return. During the operation, they also found that she had an additional congential problem of a small hole in the heart (patent foramen ovale), and they got that fixed as well. She is well rested and sleeping in the ICU room.

Thanks for all your support, encouragement and prayer.

Ken

John99
Regular Member


Date Joined Jul 2005
Total Posts : 80
   Posted 7/11/2006 6:56 AM (GMT -7)   

Ken...

I am happy to hear that surgery was successful for Elvina with no complications. How long was the actual procedure? It was brilliant that the surgeon was able to catch another problem and fix that as well. I guess one never knows what you'll find until the surgeon sees the area live. This is probaly a good time to ask about any limitations and the best way to insure for proper healing and recovery. Did the physicians express any concern over Elvina's ability to handle a long travel distance?

 
 
Tea...
 
Your english is fine and probaly better many native english language speakers.
I believe what I am experiencing now is chronic pericardial pain as I do not feel any excess fluid and my CT scan this year was negative. I did have fluid on last summer's CT scan but it was minimal so the doctor recommended "watchful waiting". But since I did not receive any formal treatment until recently, the damage to my pericardium from the excess fluid over this past year has resulted in chronic pericardium pain for me. From what I have read this can still lead to constriction as this disease moves from the acute to subacute to the chronic pain stages. Constrictive pericarditis can take years to develop as the pericardium slowly hardens, in the mean time I try to tolerate the pain and pressure the best way I can.
I am not sure I understood when you wrote "effusive pericarditis in every control". Does your scan reveal fluid?
 
 
Nan...
 
How are you?  I do not remember who your cardiologist is at Mayo but I have seen Dr Mookhadam and Dr Oh and each one seems to feel pericardium removal should not affect an otherwise healthy person but I forgot to ask about the thyroid link. In fact they seem to imply that recovery should be fairly rapid from a pericardiectomy. But from the real patient's experience from this site we know it can take some time especially with energy levels it appears. Good luck on your 18 month checkup.
 
 
John

Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/11/2006 2:24 PM (GMT -7)   
John,

Elvina was in the operating room for 3.5 hours. The heart lung bypass machine was on for 80 minutes.

At ICU, she is in big pain and just had one more chest tube, in addition to the 3 chest tubes, inserted to drain excess blood. Her haemoglobin and blood platelet are low so need blood transfusion. The heart beat is still high; we were told it may be due to the repair on the partial anomalous pulmonary venous return.

Her condition is not very stable but under control. We are worried.

Pray she will get this through asap.

Ken

John99
Regular Member


Date Joined Jul 2005
Total Posts : 80
   Posted 7/11/2006 7:43 PM (GMT -7)   
Ken...

I am going to pray that Elvina gets through these difficulties soon. Please try to stay positive.

John

Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/11/2006 8:20 PM (GMT -7)   
Elvina's heart rate has now come down to 85 to 90 per minute. We were more comforted.

She is still in ICU. She looks tired and weak.

We can now visualize her heart pumping over the shirt, and she also feels it pumping. I recalled somebody in this forum said that is normal after the pericardium was removed. Can anyone of you remind me your experience and share with me whether that will go away gradually as time goes by?

Ken

Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/11/2006 8:40 PM (GMT -7)   
Hi Ken

I totally remember that. It eventually went away (about 3 months???) I don't notice it anymore. But I do remember my shirt moving after surgery. So glad things are settling down. She will only feel better and better from here on out. The chest tubes take the longest of the tubes to get out. Once those are gone, she will feel like a new person.

I will keep you in my prayers. Hopefully we'll meet next Monday!

Do you have any family with you?

Hang in there...I still believe this is harder for the spouses than the patients...every day will get better.

Nan

Kenneth
Regular Member


Date Joined May 2006
Total Posts : 35
   Posted 7/11/2006 8:59 PM (GMT -7)   
Hi Nan,

We have 2 moms, and Elvina's brother and sister with us.

Now there are 4 chest tubes in her and for the last 28 hours in ICU, I saw the containers have accumulated 2000 ml of blood in total... not sure whether that means good or bad.

Hope we will see you at the regular ward or the suite we are staying.

Ken

Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/11/2006 9:22 PM (GMT -7)   
Hi Ken...

It's good to get rid of fluid. Glad you have family there with you. Keep us posted...

Nan
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