Pericarditis & Pericardiectomy pt. 5

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

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 . 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: a n 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

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!       Tea

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

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

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)

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!

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

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

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

Ken...

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

John

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

Hi Ken...

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

Nan