Pericarditis & Pericardiectomy pt. 6

Diseases & Conditions Heart & Cardiovascular Disease
21
Dear iamhopeful,
 
Welcome to the forum.  Hope you will be getting better and better.  Not sure whether this info is relevant to your question but my wife was told by the doctor that after pericardiectomy, everything on her will become normal in 6 months time. (about the organs, she only has an enlarged liver and the doctor said it will shrink.)
 
Dear All,
 
Elvina was discharged today.  Pray she will have a speedy recovery this time.
We asked God why he let her to have 2 open heart surgeries in less than 40 days period.  Few days ago, a massage therapist gave her a massage in the room. They talked about that it was her second operation. I was touched by a comment from the therapist, "There are a lot of things to learn when people are going through this. Maybe you did not learn well enough from the first operation, or some people who know you did not learn well from it."
 
Ken
 
 
22

Hi Kenneth...

I'm so happy to hear Elvina was discharged today.  Is she feeling better yet?  How did the follow-up echo go?  I hope more encouraging than the news you received the night we were there to visit.  Interesting insight from the massage therapist (great idea, did the hospital think of that or did you arrange it?)...major surgery certainly is life-changing for not only the patient, but family and friends as well.  I know the experience has strengthened my family.  Is the JVD going down yet?  Has her shortness of breath and fever improved?  I will keep you both in my prayers...but so thankful you are finally on the other side of this whole ordeal...I think you've been through enough.  Stay in touch...we think of you often... Nan

23
Nan,

She is feeling much better. The echo looks fine. The JVD also came down though not completely yet. She has no fever. Thank God.

The doctor said her current condition is actually what they expected after the first operation. But it didn't turn out that way and following 2 more re-admission after the first surgey, they believed that was the blood clot, which was removed in the reoperation.

She still has some pleural effusion, which causes slight shortness of breath, and is taking diuretic. From the sed rate blood test, the doctor believes she has some inflammation. She is given nonsteroidal anti-inflammatory drug.

The doctor said she can go home now. She will have one more follow-up appointment next week, and if that still confirms good progress, she will leave Rochester. (I left a week ago and her mom is with her.)

The massage therapy is a new thing. The cardiac unit thinks it would help patient recovey so arranges that for surgical patients. It does not cost any to the patients. There is only one therapist so far. Elvina had two times during her stay and she liked it a lot.

Ken
24

Hello, Ten years ago I was so sick for 8 months I would not even call my life living. I had gastroentestinal problems, chest pain and I slept in a chair (because I could not breathe laying down).I had no energy or motivation. My Dr. at the time treated me for many things and also did a lot of testing. He did a endoscopy, colonoscopy, chest x-ray, ECG and many blood tests etc. I just got worse and worse. After the colonoscopy he told me that it was all in my head and even though I was already on antidepressants he prescribed more plus pain meds. In august of 1996 I was so sick that I went to the ER room 3 nights in a row. The first night they did EKG, gallbladder scan and chest x-rays and told me I may have a virus and prescribed an antibiotic and sent me home. The second night I was even sicker and they ran the same tests and came up with the conclusion that I had possible bronchitis, changed the antibiotic and sent me home. The third night I was nearly out of my mind and threw up green liquid (a wastebasket full) on the way to the hospital. They once again ran the same tests. All of these times many Dr.'s listened to my heart and did not find anything wrong. This night they decided to keep me as I may have pneumonia. The next morning a technician came to my room to do an echocardiogram. He just began when he turned off the machine and left the room, telling me God Bless You on his way out. Things happened very fast after that. My husband was rushed from the waiting room to my room to tell me that I had pericarditis and a lot of fluid on my heart. I was rushed to ICU and had a swan gantz inserted. I was hooked up to many machines and my family was scared to death. I was on a morphine drip for the pain so I was not too scared just concerned.

The next day a heart surgeon was sent in to do a pericardial window and over a quart of fluid was taken off of my heart. I had viral pericarditis. I remained in ICU for four days and was then moved to a regular room for two days and released. What a nightmare and little did I know the nightmare was just beginning. My first night home was okay. When I woke up the next day my right arm was swollen and blue. I immediately called the Dr. and he said that I should move it around some and then the swelling would go down. I showered and noticed that the swelling was worse so back to the hospital I went. I had an infection and several blood clots on the right side of my chest from an improperly inserted swan gantz.(this was not told to me at the time) I was on heparin for five days when I began to have chest pains on the left side again. they became so severe and the nurses were trying to call my Dr. and were not getting a response. A nurse that was assigned to me leaned down close to my ear and whispered "have your husband call a cardiologist and get rid of the Dr. you have and find another one". I was so lucky that she told me that as I was bleeding from the surgery site from 7 days prior. I would have bled to death inside and soon at the rate I was going. The cardiologist removed the heparin drip and sent me to CCU for three days. There is much more to this story but I will stop now. Every Dr. I saw told me that they did not understand how not one of the Dr.'s that listened to my heart could hear any rub, but no one did. So, pericarditis is a very serious thing and I had never ever heard of it until I got it. I was on Indocin for three weeks after I was released. I also noticed that before the pericarditis was discovered I was sweating a lot but too sick to complain about that. I am so thankful to be alive today. My concern and prayers go out to others that have suffered from pericarditis. It is a life altering event even if you do not reach the point that I did.

25

So Sad,

Thanks for sharing your story, I am sorry you had to go through that medical hell. You are right on the money with your statements. Complicated pericarditis is life altering as I went through a similar hell except in my case, the fluid was only minimally seen on a CT scan and my cardiologist did not think it was severe enough to develop into constrictive pericarditis.

I experienced that whole sleeping in a chair, shortness of breath, light headedness, and pain with deep inspiration among other things. It was a living hell.  All the doctors I have seen have a difficult time hearing a pericardial rub. Only a Ct scan can detect an abnormality.  It is a shame that it seems doctors have lost the art of diagnosing based on patient's description of symptoms. If tests come out normal, and doctors don't know what is wrong then we are given behavior meds.

Are you ok now? You have not had anymore flareups?

John

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John, No, I am lucky as I never had any further problems with the pericarditis. My cardiologist told me that viral pericarditis only returns 25% of the time and it has been ten years so I think I am in the clear now. I do get an echocardiogram every couple of years so I think there may be some problems that could show up later but I have always been okay. It is a journey that only people who have had the disease can understand. Take care.
27
nyonuk said...
Hi Folks;
 
I've recently been diagnosed with constrictive pericarditis and am due to have a pericardiectomy (pending another Echo and Cardiac MRI) here in the UK within the next 3 months at the Heart Hospital in London. I have to be honest, from reading previous posts my symptoms seem a lot less than others. I do get SOB with any exercise etc. and have quite a lot of fluid retention particularly in my legs and ankles. It would be interesting to hear from others as to what to expect from the op. I would especially like to hear from anyone with a UK perspective on the treatment etc. I've been told I'm going to a world class hospital with some of the most experienced staff in the world.
 
Regards,
 
Al.

 

Hi everyone! we have a new member who posted under the thread "New Member".  I have copied his post here in hopes that you all may have some advice and suggestions for him.  Thank you all so much  Take care !~ Elisha

Elisha

Co~Mod: Depression

Moderator: Heart & Cardiovascular Disease

http://www.healingwell.com/donate

28

Hi Al...

Welcome...I hope you find answers soon.  I had a percardiectomy 18 months ago at Mayo in Rochester.  My symptoms are gone and recovery went well.  The only advice with regard to symptoms that I have is that it will not go away, and will worsen with time.  My symptoms started out less noticeable and became very tiresome by the time of surgery.  They were gone almost immediately.  I'd be happy to share my story if you find it helpful.  Surgery was about 4 hours long and I was in the hospital 5 days.  Recovery was about 6 weeks before I went back to work.  I am 36 with 2 small children.  Needless to say, it was a life changing experience for me.  Best of luck to you...there are a lot of great people on this board with various stories.  I hope you will...as I did...find comfort in this community.

Nan

29

Thanks Nan;

Sorry forgot to add the personal bits. I'm 38 years old, have 3 daughters 8,5 and 2 years old. I have a pre-op day on the 26th Sept. They say it will be up to six weeks after that I will be having surgery. My surgeon told me that up until 5 years ago it was 50/50 as to the survivability of the operation, but better case selection has led to him not 'losing' a patient in the last 5 years. He's confident at present that I will be able to have the op. Although I do still need to have the tests to check my suitability. To be honest, I don't want to think about the prospects if they decide they cannot operate. Hopefully I'll be on the mend by Christmas!

Al.

 

30

Greetings Al

It's nearly 12 months since my Pericardectomy op.

I live in County Durham so am familiar with the NHS. I suggest that you read my posts on the earlier threads.

My surgeon had done a dozen pericardectomies before. He said that "sometimes he wondered why he'd bothered"

which was pretty honest. It depends what shape you were in pre-op. I am mid 50's but have always kept fairly fit &

was able to run for 20 mins 18 months before the op. Earlier this year I did 12 mins on the cardiac treadmill.

As for the op, the few weeks of pain were WELL worth the benefit of kissing heart-failure goodbye.

You'll probably be a bit of a celebrity in hospital as it's an uncommon op, so enjoy that.

Finally don't let yourself get constipated in hospital, crapping billiard balls is no joke!

 

31
Thanks. I have no idea how many pericardiectomies my surgeon has done. From the way he spoke last time I saw him, quite a few I think. I've got my pre-admission day this Tuesday, although no date has yet been set for the op. I still have an MRI scan to attend on the 6th of October. They will decide when once they have the results from that. How long were you in hospital for? Where was the op carried out? Why do you think your surgeon said sometimes he wished he hadn't bothered? Thanks for your reply.
 
Regards,
 
Al.
32

Hi Al

I trust that your visit went well

I suppose that was part of my surgeons way of explaining the down side of surgery. But lets face it the alternative is much worse! My symptoms were like yours but I had bad gastro-intestinal trouble for 18 months before.

I spent 8 nights in hospital including 1 pre op when they did stuff like weighing, shaveing, bathing with antiseptic & a sleeping tablet to finish with.

I can only remember leaving the ward for surgery. Five hours later I was in ITU, I'd spent 30mins on by-pass.

I spoke to my wife on the phone later that day, sounding like I'd had 10 pints. I don't remember much more.

Next day, I was moved to HDU and had my first visit. They may have got me out of bed as my drains had been removed. Then off to the ward. Listen to the phisio's advice & if one's not provided, get a small firm cushion to embrace when coughing.

I soon required only paracetamol for the pain.

You should be refered to cardiac rehab classes after discharge. I enjoyed & benefited from them.

Do you live near central London. I was born in Balham but last lived in Wimbledon before moving north.

Regards

 

33
Thanks for that. I guess the less you remember of ITU etc. the better. I've had two major operations as a child and spent time in ITU both times. That was around 25 years ago now though. They took us round ITU on Tuesday. A bit daunting, but I guess better to know what you are headed for. They seem extremely competent where I'm going, can't complain about the staff. Very knowledgeable and aware of the anxiety we must go through. I live in Wiltshire and was referred to the Royal Free Hampstead initially from the Royal United Hospital in Bath as they thought I may have Pulmonary Hypertension initially. They then referred me to UCLH and finally onto The Heart Hospital. Cost a bomb so far in travelling / overnight expenses. Thankfully my employer is very understanding and I'm still getting sick pay. It feels like it's taken forever to get to this point and I'll be glad when I'm on the other side and recovering. I'll remember your point about the cushion. I have dim memories of Physio-terrorists from my ops as a child. I have to be honest I do get a lot of gastro type problems and have had for some time. Occasional bouts of vomiting and flipping between being v. loose to constipation from one day to the next. I'm guessing it's all related! I'll keep you posted!
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I know Bath & have a good friend in Freshford. Have a good week-end.
35

Hi Al...Ernesto...good to catch up on you both

Al...good luck to you as you decide and prepare for upcoming surgery.  I agree with Ernesto...a few weeks of pain is totally worth it to be free from heart failure related problems.  I was in the hospital 5 days...was excited to leave on that 5th day.  We had to stay overnight in Rochester that night because of an ice storm but went home the next day.  I couldn't fasten my own seatbelt for a week.  It all goes so fast.  I'm still so thankful that the surgery took away the symptoms.  I'll be thinking of you...best wishes!

Kenneth and Elvina...how are things going?

How are the rest of the group doing?

Later..Nan

36

Nan,

Elvina came back home 10 days ago. She had a follow-up with a doctor here who has worked at Mayo before.  The doctor gave her steroid to treat the inflammation.  Her heart beat is still around 100ish.  We will see whether the inflammation can be reduced by the steroid.  She seems feeling better on the steroid.  Her next follow-up is at the end of this week.  Hope the recovery road will not be bumpy.

Ken

37
Ken...

I've been thinking of you two. So happy she is home. I will pray that the recovery gets better every day! Stay in touch!

Nan
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drumrboi said...Hello Everyone, I recently (9/21) had an emergency pericardial window done. Spent 5 days in the hospital and another 2 weeks with a home health care nurse. As soon as the home nurse discharged me, my original regiment of scripts ran out. This was fine, my only pain was at the incision, and that was very minimal (numbness, infact). Approximately 3 days later, I woke up one morning with extreme shoulder pain which seemed to get worse over the course of a few days. One morning the pain was so severe I went back to the emergency room, only to be told that it was normal after surgery. They gave me some scripts and sent me home. The meds they gave me caused a reaction, with little relief, and this coincided with my follow-up visit with the surgeon. He said I was doing great, wrote me another script and sent me home. That script (Arthrotec) was for 3 months, mind you. My reaction continued with the new meds nearly causing another visit to the ER. However, I was able to get a same-day appt with my personal physician just 2 days ago. After 10 minutes with me, he told me to discontinue EVERYTHING, and wrote me a script for 6 days of methylprednisolone (a corticosteroid). I experienced IMMEDIATE relief of most of my pain and all side effects. The pain was entirely gone this morning, however, I am sweating heavily throughout the night. All of this background to ask a few questions of those that have experienced my situation.
1) Is the shoulder pain after cardio-thorasic surgery normal?
2) What about the night sweats?
3) about how long should I expect a full recovery to take?

I went walking about 3/4 mi. tonight. Feeling like I have alot of energy, but still not real confident with heavy objects.....etc.

Sorry if this is a bit in rambling mode, it's getting late here. :(

Looking forward to your responses,
Mike
Hi everyone, Mike here is a new member and he had some questions that he posted on the heart forum.  I have copied his post over here hoping that you all may have some insight and or answers, suggestions for him....Thank you! :-)
  Elisha

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate

39
Hi Mike
 
I did not have shoulder pain but I did have the night sweats.  Relief from the steroids would make you think of inflammation of some kind.  Can you get back in to your Cardiologist? 
 
Nan
40

HI! How are you all doing?

My own condition is as same as earlier. My medication is now only steroid+NASAIDs, the azathioprine didn't help me. 
I'm going to hospital for closer examination. Docs want to take some samples from my pericardium (pericardial biopsy?),  but I don't really know how they are going to do it.  If you have had any experience about this procedure please info me.

Looking forward to hearing about your experience.

Best wishes to everyone!  Be well!

 

Tea