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Pericarditis & Pericardiectomy pt. 4

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Posted 4/26/2006 1:55 PM (GMT 0)
Hi everyone,  Storri asked that I start a new thread for this, so here you go.....
Posted 5/1/2006 1:12 AM (GMT 0)

Thanks Elisha, I appreciate that......

John!  I completely understand the constricting feeling that you feel, like someone is almost sitting on your heart, or major pressure.  As far as the chest pain, Motrin doesn't cut it for me, I am stuck taking ms-contin for it, and I hate it, but its the only thing that works for the moment.  It scares me because I have been taking it for so long, I am worried that I will be addicted to it, but, it seems to be the only thing that works.  At one point, I was taking over 12 advils a day, and it was wreaking havoc on my stomach, so we had to go stronger...hope this helps!  Cath

Posted 5/1/2006 3:13 AM (GMT 0)

Thanks Cathy for your reply. I do not think I can get a doctor to write for morphine. Getting a prescription for Motrin 600 was the strongest my doctor would write for since he was concerned with GI issues. I seem to breathe better outdoors than indoors for some reason with less pain upon deep inspiration. Does your pain worsen or become more prominent upon deep inspiration? I know Vegas can get hot out there so does weather have any effect on your condition? I wonder how everyone else is doing since the board has been rather quiet of late. Hopefully everyone is still around and doing well but just busy getting along with their lives.

John

Posted 5/1/2006 5:42 AM (GMT 0)
Hi everyone!

I don't have anything useful to add about the inspiration pain...sorry.  I had that when I had what we think was my pericarditis (aka "pneumonia, and pleuritis").  Advil helped and then it went away.

Otherwise, nothing new...have been really busy.  So glad spring is here.  Nice to see color and green again!

How is everyone else doing?

Nan

Posted 5/1/2006 3:14 PM (GMT 0)
Dear All,

Can anyone of you share your thoughts in deciding which hospital to go for surgery - Mayo Rochester or Cleveland, by means of mortality rate, experience, post-surgery caring, recovery rate, and COST etc.?

I was very happy to find this website very recently.  Like a lot of you, after more than 10 years of diagnosis, till recently could I get the correct diagnosis of constrictive pericarditis.  One of my cardiologists said I can wait and may not have to do the surgery now because the symptoms are not very severe yet. But for me, I can feel and know it is getting worse especially in the past 3 years, palpitation, fast and hard hearbeat, shortness of breath, enlarged liver, and high pressure and pressure equalization in the 4 chambers.  Yes, I do have the jugular vein pulsating - obvious and fast. 

Thanks in advance !!!

Regards,

Elvina

Posted 5/1/2006 9:01 PM (GMT 0)
Hi Elvina,  I just wanted to step in here for a second and welcome you to healing well forum.  We are happy to have you.  This is a wonderful site for support and information also the people are just fabulous.  I hope you continue to post and are able to get your question answered.  I don't have pericarditis so I am not of much help here..sorry.  Take care.
Posted 5/2/2006 11:04 PM (GMT 0)
LindaH said... Christine--I had a pericardiectomy on April 4, with the same doctor and surgeon that you had.  I agree that they are wonderful.  Dr. Nishamura, although not involved in the surgery, stopped by my hospital room over the weekend just to see how I was doing!  How are you healing?  Did you have the thorocotomy or the sternectomy?  It's been 4 weeks, and although I've made a lot of progress, I thought I'd be feeling much better by now.  I don't want to discourage you--I've had some complications, but I'm not complaining, I can get in and out of bed by myself now! Linda H Post Edited (LindaH) : 5/2/2006 9:57:46 AM (GMT-6) Hi Linda,  I wanted to welcome you to Healing well forum.  I have moved your post to Christine here in the Pericardiectomy thread so she will be sure to see it.  I hope that you continue to post here we have such a wonderful caring supportive environment.  Take care....
Posted 5/3/2006 3:11 AM (GMT 0)

Welcome Elvina and Linda!  Christine I've been thinking of you!  Hope you and Linda will be feeling great soon!

I also had my surgery at Mayo in Rochester (Dec, 2004).  Dr. Schaff did my surgery.  I had a thoracotomy.  Elvina, I don't have info with Rochester vs Cleveland other than my surgeon last year told my Rochester did my pericardiectomies per year than anywhere else in the world and that was still only about 60.  My entire bill for 5 days stay was 33,000 which was almost all covered by insurance.  However, we have had several here on this thread that have gone to Cleveland with good results too.

Linda...hang in there...slowly but surely you will feel better and better.  I remember what you are saying about getting in and out of bed on your own!  Congrats!  I also remember being able to fasten my own seat belt for the first time.  It was the side to side motion that was tough for me.

Elisha...I do not get an email with new postings like I used to...is there anything I can do?  I have been checking the box but it doesn't seem to matter...

Happy May everyone!

Nan

Posted 5/3/2006 7:37 PM (GMT 0)
Nan,  I think admin still has this feature disabled since December or so...I haven't been using it so I'm not too sure on it.  Let me check on it and I will get back to you. Yes, Nan it appears to still be disabled...sorry.
Posted 5/4/2006 2:04 PM (GMT 0)

Hello again,

Linda, Dr. Nishimura also stopped by to visit me while I was inthe hospital. I can't speak enough about how well the Mayo took care of me and my family. We were all scared (go figure!) and the staff paid as much attention to my family as they did to me. Someone came out of the operating room to let them know what was happening. While Dr. Bama was closing, Dr. Orszulak came out and talked extensively about what he'd found and what he'd done. Over the week I was in the hospital, the staff continued to be caring and attentive to us all.

What kind of complications did you have? I've apparently had a low-grade post-operative pneumonia. I go back to my doctor today to see if it's finally going away (and make sure it is the only thing that's a problem). The incision was a thorocotomy and it is healing nicely. I gather that the choice of incision is based on what part of the pericardium the surgeon is trying to reach.  Dr. O told me that the thorocotomy is much more painful than the sternectomy, but i didn't find it to be awfully painful. I must admit, though, that my left breast is very SORE. Not the incision - the breast. Who would have thought?!

How are you getting along now?

John, I think you asked in the last post about the surgery and how long I was in the hospital. Dr. O said that they were very surprised when they opened me up and found that there were no adhesions. All the preliminary tests - echo, MRI, etc - indicated CP. However, the pericardium was filled with fluid and it took several drainings to remove all the fluid. Since there were no tricky adhesions to peel off the heart, the surgery went very quickly and was done in three hours. I was in the ICU for one day and came out of the anesthesia quickly. The surgery was eprformed on Friday April 14 and I was released on the follwoing Wednesday to head to the airport to fly home for my sister's funeral. Dr. O would have liked me to stay in a hotel for a day or two, but he supported getting everything done so I could catch the plane.

The trip home wa draining - to say the least.

The first three days at home were pretty good. Then I started a fever and waking up at night soaking wet (change sheets, change pajamas, etc). Chest X-rays were negative for pneumonia, the incision was healing clean, so my doctor put me on antibiotics. Four days later, the fevers were constant at 100.4ish and I was coughing constantly. WHen he listened to my chest he heard a louder rub than he'd ever heard with the pericarditis. Obviously disturbing. More tests and I return this morning. We spoke to the Mayo clinic and they were also concerned about the rub. We'll see what happens when I go in to see my doc this morning.

As far as the chest pressure, chest pains, heart palpitations, and the other assortment of misery from the pericarditis - all gone!!!! No fat guy partying on my chest with six of his closest friends.

Elvina, in spite of the downsides of this surgery, they are small in comparison to the downsides of existing with the CP. Obviously none of us has had a pericardiectomy at both hospitals, but it sure sounds like they are pretty much equal providers. Does your local cardiologist have a prference? Is one closer than the other?

christine

Posted 5/4/2006 4:51 PM (GMT 0)

Christine,

Glad to hear you are doing so well.  My left breast is also very, very sore!  I'm not sure if a sports bra would help or not--it would have to be low enough to avoid the scar and high enough to avoid the chest tube incisions.  The complications I had were with the chest tubes.  After the chest tubes were pulled, air would escape from the right side when I would cough, blow my nose, or move from sitting to laying.  The next day it was decided that the hole wasn't properly sealed with the bandage.  I ended up with pleural pneumothoraces and pleural effusions, resulting in 3 additional days of hospitalization on an oxygen mask.  One week after coming home I developed an infection in one of the chest tube incisions--ironically, not the one that was originally leaking air.  After a week of antibiotics it quit draining, but has since resumed drainage.  I had a culture of the drainage taken Monday and am still waiting the results.  My local doctor says it could be an antibiotic resistant infection or staff.  I've been put on antibiotics again until the results are in--shoud be yet this week. 

Have you had any problems with your chest tube sites?  Have they healed?  Have you found anything that alleviates the breast pain?  I guess you should be asking me since you just had your surgery!

LindaH

Posted 5/4/2006 6:13 PM (GMT 0)

Linda,

I just got back from my local doctor and, I have to admit, I am pretty discouraged.

First - I had no problems with the chest tubes. Since they used an epidural pain management system at the hospital, I didn't even feel discomfort when they pulled the tubes. Although my daughter looked pretty pale when they did it (I chose not to look). The incision and the tubes - all are healing well.

For the breast, I've found that wearing a cotton/spandex camisole helps. It's tight enough to hold the breast without having to sit on top of the incision.

Second - my doctor is still hearing the pericardial rub. When I left the office, he was on the phone with the Mayo clinic to talk to Dr. Orzsulak about it. He first heard the rub on Monday, very loud, and then again today, almost as loud. The tentative plan (pre-discussion with Dr. O) is to use a 4 week course of steroids to reduce all inflammation in the area and see if that stops the rub. And I still have a low-grade fever (hopefully from the pericardial rub) and cough (who knows what's causing that. I was rooting for low-grade pneumonia, which could also be there...)

blaaaaagghghgh...

christine

Posted 5/5/2006 12:15 PM (GMT 0)
Christine,

Thanks for sharing your surgical experience with us, it is helpful to all of us who read the posts. I believe this pericardial rub should resolve itself once the inflammation goes down, just hang in as there are usually some sort of minor post surgical complication with a surgery this big. You are obviously a resilient person surviving the pericardiectomy and having to deal with your sister's funeral. My father recently passed away after a month long struggle in the hospital following open heart surgery and it was difficult for me trying to deal with my own health issues as well as his.
I am glad to hear that there were no adhesions to your heart but I thought the diagnostic scan you had in Utah had revealed adhesion or was it calcification? Did the doctors know about the fluid in the pericardium prior to surgery?

John
Posted 5/5/2006 12:24 PM (GMT 0)

John,

The MRI scan performed in November (at the U of U medical center) did show adhesions. The echo performed just before the surgery (at the Mayo) also suggested adhesions. No-one was expecting fluid - so it was a big surprise for the surgeons. Apparently, the diagnostic tests are not as accurate as we all thought.

christine

Posted 5/6/2006 5:12 PM (GMT 0)

Christine,

I also had a very loud, intermittent rub following my surgery.  It really freaked my husband out--he said he could hear my heart from across the room as loud as if he was using a stethescope!  Dr. N assured me it was common after surgery and should go away after a couple of weeks--and it has.  Hopefully, yours will, too.

Posted 5/6/2006 6:20 PM (GMT 0)

linda,

thanks for the input - it's good to know this isn't just the start of another journey through hell. Although, rub or not - now that the fevers have subsided I feel more alive than I have felt in 6 months. I can even sing along with the radio now (windows up, of course, since my singing is not a thing of beauty). No crushing sensation. No SOB. No gasping for air. No pain. WOW. There is life after pericarditis.

christine

Posted 5/8/2006 6:00 AM (GMT 0)

Hey John,

I dont think you need morphine, I am taking a low grade, but, you might do well with ADVIL, as Nan had mentioned, or Loratab or Percocet, they are very low grade pain pills; and might really help, and YES>>>>..the pain with inspiration was the worst, but, how long can you HOLD your breath for??  I found myself doing that as well.......also, if you sit up, and lean forward, I found that helped as well.  I really hope that you get to the bottom of this soon, as what you are going through is the worst, just the not knowing...

Elvina, Both hospitals are great, either The Cleveland heart clinic or The mayo clinic in Rochester, Minn, I live in Las Vegas, and both were far for me, but, I visited both hospitals before I had surgery, and the reason I went with Cleveland, and Dr. Lytle, was because he was the only surgeon that can preform this surgery doing a thorocotomy.  That means, they do not need to go through the sternum, and they cut UNDER the breasts and GO IN BETWEEN the ribs.  Christine, was correct, they DO say it is more painful, but, lets face it, this surgery is no picnic anyway, and what is most important is to GO TO A VERY EXPERIENCED CENTER< and that means EITHER MAYO OR CLEVELAND.....if you look up Dr. Bruce Lytle online, you will see he graduated cum laude at Harvard Medical School; and to graduate at the TOP of your class at HARVARD is pretty substantial...he is know the Chairman of the hospital, and has done a TON of PERICARDIECTOMIES, and his cardiologist, Dr. Allen Klein is one of the FEW PERICARDIAL EXPERTS in the country, there aren't very many of them, and Klein and Lytle work together, and since I had surgery close to eight months ago.....(seems like eight years ago!)  I have referred about five people there, that have had the surgery with him, and all had EXCELLENT RESULTS.  There is NOTHING wrong with MAYO, and honestly the ONLY reason I didn't go with them, is because I didn't want that STERUM scar being a girl, and Lytle can preform that without opening your chest cavity, and he does not use a heart lung machine for the surgery, so, he really was the best choice for me.  I also liked the fact that when I went to Mayo, they wanted to operate the next day, and THE NEXT day I had a flight to go directly from MAYO to CLEVELAND, and when i got to Cleveland, they preformed the same tests, and they told me that I had a year easily before I needed surgery, I liked the fact that they did not shove the surgery down my throat and gave me the time.  Its a big decision, but either hospital is excellent and you will be in good hands either way..   CHRISTINE, so glad you are doing well....I am due to go back to Lytle for my six month post checkup, but, I am doing so well, I am going to wait a year, unless I have problems......I no longer swell, or how you put it which was funny, and that is having people sit on my chest.....my jugular vein is completely normal.......I have lost a ton of weight, due to the acsites being gone, and most importantly, the ARRTHYMIA's are gone, which I lived with for so many years, its weird, I will be sitting watching TV, and it will hit me, that I have a normal heartbeat.....the best thing I could have ever done for myself was have SURGERY, and had it NOT been for NAN's support on this site, who know's, I may have still not have gone yet.............btw, NAN>>>always nice to see you, and so happy you are continuing to do great...you are my hero as always....Cathy

Posted 5/8/2006 3:47 PM (GMT 0)
 

Christine,

I agree, imaging is not always precise.... it  seems to me when the open the chest they frequently find something different...

I'm 9 mo after pericardiectomy...  stunning difference for me.... on the positive side.

-mrozek

Posted 5/8/2006 4:51 PM (GMT 0)

Mrozek

only three and a half weeks after surgery and i can run up the stairs and holler at the top of my voice. I could barely walk up the stairs without fainting only a few weeks ago. I haven't felt so ALIVE in over a year. Don't get me wrong. I'm still recovering from the post-surgial pneumonia i developed. and there's lots of soreness associated with the thorocotomy. But having enough breathe to run up the stairs and make noise at the same time - WOW.

anyone out there who is wavering about having a pericardiectomy to address pericarditis (cosntricitve, recurrent, or effusive) - the downside of major heart surgery is nothing compared to having LIFE again. Not just the ability to continue exisiting, but really living.

Dr. Nishimura (cardiologist) and Dr. Orzsulak (surgeon) at the Mayo were incredible. They told my family while I was still being stiched up, that there was so much fluid around my heart (none of which showed in all the imaging!!!) that if it had continued much longer there would, at best, be irreversible heart damage or my heart would have simply given up trying. I believe they saved my life.

christine

Posted 5/9/2006 6:29 AM (GMT 0)

Hi guys...

Christine...how wonderful for you to have your life back!!!  Congratulations.  I know just what you mean.  I'm almost 18 months post surgery (I can't believe it!) and I still think about it every day...how lucky I am to feel good and have my life back and be a mom to my little kids.  No one is "strangling" me when I walk and I can run up the stairs and feel just a little winded instead of feeling like my head was going to explode.  I remember bursting into tears at a concert a few months after surgery where I walked up a HUGE flight of stairs with NO problem.  I'm thankful for it every day.

Mrozek...

Glad you are continuing to feel well...

Cathy...

Always great to see your posts.  I remember how nervous I was the day you were in surgery and thought how amazing it is that a diagnosis can connect people that have otherwise never met.  This site has been my support group.  I'm glad you are doing so great. 

I'll keep checking in...wishing all of you the best...

Nan

Posted 5/9/2006 10:01 PM (GMT 0)
Boy, has it ever been a long time...   tongue

Nan, Cathy, Mrozek, and all the other old timers: good to see you're still around and kicking!  To all the newcomers: welcome, and you're in great hands!

I'm approaching the one year anniversary of my pericardiectomy (the surgery was on May 31st of 2005), and I'm doing great.  I believe the last I posted I was seeing a pulmonary guy who was treating my pleural effusion.  It turns out that I've got a permanent thickening of the pleura on my right side, but it is more or less negligible, and, in any case, I was fully discharged and deemed completely cured back in January.  Woo hoo! yeah

These days I'm just living.  I discovered, fairly recently, that I've got hypothyroidism, and so I'm waiting for my meds to kick in, but aside from that, I can't complain.

To Nan---I'm still going to the gym, sticking to the workouts.  At least now I know why I wasn't losing weight...  (I.e., b/c of the hypothyroidism.)

Anyhow.  Best wishes to everyone!  Be well!

Much love,

Mister S.

Posted 5/10/2006 5:45 AM (GMT 0)
Mister_S

Hypothyroidism..Huhh I also discovered after pericardiectomy that I have a mild Hypothyroidism... taking low dose of drugs...

Are we discovering here something? Pericardiectomy and Hypothyroidism...

-mrozek
Posted 5/11/2006 12:26 AM (GMT 0)

Mister!  Great to hear from you...I've been wondering how you are...

How bizarre is that?  I ALSO was diagnosed with hypothyroidism after my pericardiectomy...and tested several times before that, all normal.  I'm on meds.  I'm struggling with my weight.  The meds did not help me lose it.  I was hoping it would help but it didn't.  Good for you on the gym, Mister...I have been working so much and have not gotten together for exercise yet.  I still feel great.  I wonder if there is a connection...

Mrozek...I didn't know it was the same for you too...strange.  I wonder if the doctors would learn something if they read these posts :)

I better run...stay in touch all...

Nan

Posted 5/14/2006 6:09 PM (GMT 0)

HEY MISTER!!  GREAT TOO SEE YOU!!!!  SO glad you are doing great...........WELL GUYS!!! GUESS WHAT..I HAVE hypothyroidism AS WELL!!!!!  yeah What is with that????  I have been taking Levothyroxine for a LONG time now; and mine is NOT mild, MY DOSE is 0.15MG, they started me off on the smallest dose, and SLOWLY over the course of a year, kept upping it and upping it, and finally they got me to a dose that worked......I am now on one of the highest doses, they told me that usually only VERY ELDERLY people take such a high dose...

WELL MISTER....I think you hit on something here......how do we all have that..???  NAN, MISTER, MROZEK...interesting.....NAN, the only difference with me, is I was diagnosed WAY WAY before I even knew I had pericarditis.....and you like me, I am having trouble getting back to my normal weight, and I hardly eat anything.......I was 117 to 119 pounds for twenty years, then the swelling started, and if you can believe this, when I went into have surgery, I was 160pds....a lifetime worth of clothes NO LONGER even come close to fitting...I dropped dramatically after the surgery to 149pds, and now I am at 140pds, and STUCK.  I can't exercise yet, because I don't have the stamina, I still get tired very easily, do you guys?  I want to be strong again so bad, I used to be a hyper person, and I loved it, this is horrible!  I want to wear my old clothes........hmmmm, LYPOSUCTION?????  LMBO>>>just kidding, never ever in a million years, I have been through enough, if I cant get my weight down in the next year, I will be forced to get out of denial and take the million pds of clothes, size two's and four's, forever out of my closet..::sob::, sorry guys, its a girl thang....LOL...NAN, as always, you are my inspiration, tongue tongue tongue and girl, you know YOU were instrumental in getting me to SCHEDULE my pericardiectomy.  After having atrial fib about five times a week; and arrythmia's EVERY day.......I have NOT had an extra heartbeat since surgery, that is what is truly amazing, I will be watching TV at night, and IT STILL WILL HIT ME>>>>and i will think, my heart is beating normal, how strange???  BUT, its wonderful, we all finally have LIFE AGAIN, it doesn't get any better than that!  MROZEK, have you talked to Dr. Lytle since you left?  Are you going for the six month check up?  I am SOOO far away, and since I am doing good, I am going to wait a YEAR.  But, I have a local cardiogist that has already done mri/catscan/chestxray on me a few months ago...I have islands that are up to 4mm, but, that is nothing in comparsion to the 11mm I had, and it BLANKETED my heart, he had told me that creating islands, stops the constriction, and thus, the reason I am doing so well....NAN, if you still have my email address, email me, I want to talk to you about a couple womanly things..!         MISTER!  Welcome back!!!    Cath

Posted 5/14/2006 6:22 PM (GMT 0)
oh, and one more thing...NAN, that was very sweet, and its funny, because as soon as I got out of surgery, all I could think about was getting to the public computer on the floor at Cleveland, so that I could WRITE you to tell you I was ALIVE!!! We will forever be tied together by a common bond, I truly hope we all stay in touch, as I mentioned above, had I not met you, I would have put surgery off longer, and I was at a CRITICAL POINT, but, before this site, I could not find ANYONE that had this surgery and done well, I had found one person, that went to an inexperienced center and had DISASTOUS effects, the doctor bailed in the middle of surgery, because he was in over his head, and left this man in bad shape, last I heard, he was so tramatized, his wife can't get him to go back, and he is in the last stages of heart failure, so, I hope we can't STRESS enough, that going to an experienced center is KEY to SUCCESS, and even if a doctor in BO dunk Idaho, says he has done them, ask for STATS, its your body, your life, and your responsibility to educate yourself, and thanks to this site, (and NAN and MISTER) I don't know what I would have done, YOU GUYS WERE MY HERO'S...still are!!......MAY 27th, I am on my 10 MONTH PERICARDIECTOMY ANNIVERSARY! Wow Nan, I didn't realize you were only eight month ahead of me, I thought it was a lot more time in between our surgeries. When you went in, was this site up? Cath btw, CHRISTINE, congratulations, you sound like you are doing wonderfully!
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