Pericarditis & Pericardiectomy Part V

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Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/8/2005 7:55 PM (GMT -7)   
Welcome to all new and past members of the "Pericarditis & Pericardiectomy Club" and all their caring friends!! yeah
 
As you will see this has really become a very popular thread and one where we can all share and offer much needed support to each and every person that enters this arena...
 
Pericarditis is a rare condition and in the past Part I, II, III, IV and now Part V threads you will find that those that have traveled this path and those to come will find the people here are tremendously open, caring and supportive! 
 
Welcome!!
 
Your Moderator,
Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Mrozek
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Date Joined Mar 2005
Total Posts : 61
   Posted 7/9/2005 2:35 AM (GMT -7)   
 
Teri,
 
Yes, I've been to Cleveland last year... since my CP was considered "mild", at that time I was advised the "wait and see" approach.
 
Unfortunately my situation is getting worse, now I'm trying to schedule surgery in the  Aug/Sept time frame... Storri had the same "cast of characters"...  I just love her reports.
 
I'm trying to find info about the "Guest House" program at Cleveland... we can use some "tips" on how to ease the financial burden....  we are working with a "financial consultant" at the Cleveland Clinic to hammer out the insurance issues... they really want to preauth everything. 
 
Money saving tips to travel and stay for my family in Cleveland are welcome!  
 
 

havefaith
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 7/9/2005 4:29 AM (GMT -7)   
Okay, I really needed that laugh Cathy.  I had the WoRST day yesterday.  I've had 3 surgeries in life, none nearly as severe as what your body has been through and I definitely think this was related.  Your body is going through so much.  Don't worry this will be an isolated situation.  It's great of you to be so down-to-earth.  I love people who are REAL, hard to come by these days.  I had everything from uncontrollable burping to dry heaving to losing 30lbs after my hysterectomy.  I can't imagine your body trying to recover. You blame anything you want on your surgery.  After all you want come by a chance like this again, right? 
I saw my new Dr yesterday.  She had this great idea of a repeat echo and told me the pressure in my head was probably alleriges.  Nan?  Help me here.  I know this is not allergies.  Did any of your Drs ever address this fullness feeling?  What causes it?  Can you describe anything about it?  Was it constant or just on and off?  Did you have other symptoms before it?  And a repeat echo?  Doesn't CP have to be really advanced to show up in an echo?  Are these people wasrting my time?  I have no where to go.  These Drs keep sending me for Pulmonary Function tests and Echos.  Once , I had mild hypokinesis in the right ventricle.  Other than that the echos come out normal.  Maybe, I should just stop this crazy hunt and someday I'll wake up to my old life.  Funny speaking of the aftermaths of surgery, this all started after my hysterectomy.  Last summer I spent the whole summer in one Drs appointment to the next.  Now, I don't even have any Drs left to turn to.  This one specialist deemed my problems autoimmune related and ruled out Constrictive Pericarditis/Restrictive cardiomyopathy(I can't wrap my head around that diagnosis) and wrote in my records that I was mad saying "I can't believe I can't breathe and no one wants to help me."  Anyway, this specialist scared away any chance I had of getting help.  What are the chances something will show up in an echo?  
I can't believe this is part V.  what a great group!!!!!!!!!!!!!!!!!!! 

Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/9/2005 7:01 AM (GMT -7)   
Mrozek, I am so sorry to hear that this has gotten to this point and I know when Cathy sees this or anyone else with this experience, they will give you the info you are seeking! Have you spoken to anyone in their Social Services area? Please keep us posted on your situation and let us know as your surgical time nears. Make sure to ask a lot of questions, both here to those that have been through this already and of your surgeons!!

With Big Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Teri16
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Date Joined Dec 2003
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   Posted 7/9/2005 7:18 AM (GMT -7)   
havefaith, the echo is a great diagnostic tool used in heart disease, although it doesn't tell all...
  "an echocardiogram -- may also show abnormal movement of the interventricular septum"  Source:  MedlinePlus 
Here is some more info on pericarditis and the tests that are suggested...
pub/guide/disease/other/pericarditis.htm?index=10515
 
ency/article/001103.htm
 
I wish you the very best!!
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/9/2005 7:33 AM (GMT -7)   
Mrozek, I have located a site that will perhaps help you.
This page will give you more info on programs that are available at the hospital, along with a # for Lodging -- Check a recorded message at (216) 444-4848.  I just called this number and it tells you all the available housing and by using their name that you will get a discount. 
 
Let me know if there is anything else that I can do to help you.
 
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Teri16
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Date Joined Dec 2003
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   Posted 7/9/2005 7:35 AM (GMT -7)   
Cathy, I hope you are feeling even better today!! :)

Big Hugs, Teri :)
xoxoxo
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/9/2005 9:10 AM (GMT -7)   
Cathy...now it's my turn to write LMAO! I was laughing out loud! My husband was asking me who was writing what...pretty funny. I wouldn't worry about it dear...you were probably compensating so much for the pain from laughing that you didn't notice you sprung a leak. Plus, you will be peeing a LOT right now as you get rid of all that fluid! Anyway, great story...

HaveFaith. I complained of the full feeling in my head and had 3 echoes, all normal, and abnormal PFT's...in the span of 14 months. Unless they know how to do a specialized echo (they need to test pressure with inhaling/exhaling) it isn't always obvious. As I said...my hospital here, where I happen to work, has a great cardiac unit and reputation. I had a left sided cath, 3 echoes, and 2 stress tests, and this diagnosis was never considered. At Mayo...10 minutes and they knew...and they confirmed it with the echo and CT scan. Have you had a CT scan looking for the thickness of the pericardium yet? Are you close to one of the Mayo Clinics or Cleveland? I lost a year of my life going to doctors because they didn't know what to look for. All of my notes are consistent...full feeling in head, swollen eyes in the morning, throat pressure...it seems so obvious to me now when you read the symptoms of CP...but it is obviously easy to miss. Please go somewhere where they will do the right tests for you. I don't think they do the specialized echo everywhere, I know they don't at our hospital...they were going to put me through a right sided cath to check pressure. At Mayo, they didn't need that invasive test to confirm the diagnosis...hope that all helps. But, the full feeling in the head is definitely part of CP symptoms...not to say you don't have allergies...but don't let them gloss over it...if it is CP, it does not get better with time. There is a difference between CP and restrictive cardiomyopathy too.

Way to go Part V!!!!

Mrozek...good luck in your preparations!!!!! I'll be thinking of you!

Nan

Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/9/2005 9:32 AM (GMT -7)   
Thanks, Nan!! :) I hope you are doing well?!

Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/9/2005 9:34 AM (GMT -7)   
Posted Today 11:24 AM (GMT -6)
Cathy I believe it's just the trama of the surgery...it will get better in time you've probably lost some muscle...that will come back. It happens to me when ever I get sick.

Andrea


--------------------------------------------------------------------------------

"Life is too short"

Post Edited (Teri16) : 7/9/2005 10:40:33 AM (GMT-6)


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/9/2005 9:35 AM (GMT -7)   
Andrea, sorry to move your post, but I didn't want it getting lost...

Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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bkraber
New Member


Date Joined Jun 2005
Total Posts : 11
   Posted 7/9/2005 9:47 AM (GMT -7)   
Cathy,
As I will undergo my surgery on Tuesday at Mayo, I will have something to look forward to!!!! I will try to hold down my laughter and jokes! I am very grateful for this forum. It is so reassuring to know that others have gone through the same thing I am and that we all get through it. Nan, how long were you in St. Mary's and where did your family stay. Mine will be at the Staybridge Suites across from the hospital.
Brenda

Storri
Regular Member


Date Joined Mar 2005
Total Posts : 191
   Posted 7/9/2005 12:46 PM (GMT -7)   

Wow Brenda, I want to wish you all the luck in the world, but I know you won't need it, as you can see, everyone that has gone to an experienced center has done great.  I am still suffering from the same symptoms...argg, acities..pain...jvd...but they say he "suspects" it will get better, altho, he told me had I come in without a symptom, he still would have operated on me, because of the weight on the right ventricle would have taken my life.  He never could give me a time frame, because they don't know.  One thing that has improved...No crazy heartbeats...wow, what a difference that is not having atrial fib, or just plain arrythmia's.  I have completely enjoyed living without those.

I was sure you all would enjoy that story, altho it was a bit embarrasing.  I know we all have one of those realatives that is painful to talk too, this aunt is living with about ten cats and drives away all human beings.  argggg...gotta love her...

Nan, Teri, I was pretty sure it has to be from the surgery, being that my body has been tramatized, along with my mind...lol..I will tell you one thing...if you start that laugh, RUN for the pillow, I am still hurting today from it.  Still hurts to breathe in...Mister, Nan...Ter...How long on that??  Have a great day guys.  Oh and Mozerk...go to:

http://www.clevelandclinic.org/tour/main.asp?site=Guest_House_Hotel

WE stopped there so many times a day on the shuttle.  My brother and girlfriend stayed there.  They have kitchenette which cuts down on the food bill...and they are very nice..also has a deli in the lobby.  No need for rides..they take you everywhere...we needed "stuff", they took us to the grocery store...walmart...you name it..super cool people.  Tell our Einstein hello when you see him...BUT tell him...no pain like Cathy in ICU!!  No mistakes on the epuderal.  I know you will do great there.  Is he operating under the ribs like mine or the sternum??  Lemme know...Cath


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/9/2005 3:03 PM (GMT -7)   
Hi...Brenda, my family also stayed at the Staybridge Suites across the street...it was very nice. My husband ate a few meals at the Canadian Honker next door...he said the food is great. The St. Mary's cafeteria isn't too bad either, until you receive it in your room as a patient :) I was in the hospital from Wed til Monday. It goes fast. They are so great during surgery...they have a person that goes back and forth from the waiting room to the surgical suite so my family knew what was going on and when...I think that helped a lot.

It was a strange feeling the morning of surgery...I had to check in at 5:45...had just washed with this pink soap...and put this antibacterial goop in my nose...and I stood in line with probably 50 other people with suitcases and family members...weird feeling. But you have to admire their organization. The place runs like a machine.

I will definitely be thinking of you. It will be great to be on the other side of things and wake up and only have recovery to worry about...

Good luck to you!!!!

Nan

Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/9/2005 4:58 PM (GMT -7)   
Best Wishes to you, Brenda!! 
 
You will be on our "Most Wanted" list this next week...Most Wanted to come back to HealingWell feeling great!! tongue
 
You've already heard from some of the greatest people here and ones that have already been in your shoes.  So I'll expect to get a great report from you upon your return in a couple of weeks (or as soon as you are able)! yeah
 
Big Hugs, Teri tongue
xoxoxo
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/9/2005 5:03 PM (GMT -7)   
Cathy, now that you've returned from that "Most Wanted" list tongue I know you've had your share of discomfort and pain.  Remember what I've said before...this was a violation of your body and many muscles and nerves have been now letting you know that!  It is so individual with the healing time, but in a few weeks that breathing in/hurting problem should be on it's way out the door!
 
I'm sooooo happy to hear you up and chipper once again, actually more chipper than I've ever heard you!!
 
Hugs and Love, Teri tongue
xoxoxo
 
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Storri
Regular Member


Date Joined Mar 2005
Total Posts : 191
   Posted 7/9/2005 11:26 PM (GMT -7)   

HI ya Teri...you have become such a good friend, hard to imagine life without you now!  I am feeling better by day by day.  Feeling a bit depressed today, I think i am just plain tired of being in the house.  I was feeling pretty itchy around the incision site....also, is it numb feeling around your incision sites??  Does it come back???  Feels weird...

Brenda, all the luck in the world, we will all be praying for you.  I try to remember what I felt like when I woke up from surgery and all I can come with is the night from hell.  My family told me today that I was saying nothing but how bad the pain was...I guess my husband found the surgeon and told him and thus he ordered the epurdeal.  If you can request one before, go for it, I was stupid and declined it from the beginning.  I think had they had more time to get it going perhaps they would not have screwed it up.  But that is behind me, and yes, yes yes, I am happy to be alive and wonder what the future has in store.  It really freaks me out to see how many people have this problem, it seems like we have a new person a week.  So much for theory that this is rare, I just wish I knew what caused it, so that we can prevent it.  If you have a chance to talk to your doctor's, let them know about how many there is of us.  I think the reason know one knew before is there was no where to gage this.  Nowadays, with internet, the second we are diagnosed with something...we hit the internet, and find this haven...especially for this problem..  btw, mozark...the Guesthouse is about $35.00 a night; I don't think you will find anything better, its very nice.  Best wishes Brenda..please let us know as soon as you can.  Teri...your my girl, you always LIFT ME UP!!  love ya Cathy


Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/10/2005 8:32 AM (GMT -7)   
Good Morning, Cathy and Everyone! tongue
 
Numbness around the incision site is caused from the nerves that were injured, so it takes each of us a different length of time for that weird feeling to leave during the healing processs.  10 months (plus) post bypass, mine is gone now over the sternum.  Yet when I had a carotid endarterectomy in 2001, that has left me with a numbness in a portion of my neck and under my chin.  Guess it's there to stay.
 
Cathy, you do need to get outdoors and breath in some fresh air, along with a bit of sunshine! tongue A bit of depression, or 'let down' may occur after all the emotional upheaval and physical violation of the body that you've gone through.  Please discuss this with your Dr.!
 
Be well, my friend.
Hugs from Texas, tongue Teri  
xoxoxo
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


havefaith
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 7/11/2005 7:44 AM (GMT -7)   
Hope you are all doing well. 
Best of luck to those with upcoming surgeries.  Cathy, I pray for resolution of your symptoms.
Nan, I am no where close to a Mayo clinic and don't think I qualify for any resources yet.  Interesting though, my echos are always normal but PFTs are abnormal.  What areas of your PFTs were abnormal?  Total lung capacity and DLCOs or just low DLCO? OR what?  if you know?  My PFTS were low DLCOs but lung capaicty was fine so they pointed to a cardiac source-low cardiac output.  My pulse was in the high 90s but lately is in the 80s.  Anyone want to share this info? I'm hoping my symptoms will follow my heart rate and start to improve.  Hey!!  a girl can hope.  Besides, I have beat three fatal diagnoses so anything is possible now.
As always my thoughts are with you.

Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/11/2005 11:30 AM (GMT -7)   
Hi havefaith! 
 
I believe in positive thinking myself and am glad to hear that you've come through the gamut and back again!! yeah   Would you care to share anything about these diagnoses with us?!
 
Take care!
 
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Teri16
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Date Joined Dec 2003
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   Posted 7/11/2005 11:34 AM (GMT -7)   
Brenda, I hope everything goes well with your surgery!! yeah
 
Thinking of you and sending my best!
 
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Andrea1
Regular Member


Date Joined Jun 2004
Total Posts : 51
   Posted 7/11/2005 4:28 PM (GMT -7)   

Cathy do you think you could send us the news articles written about you after your surgery?  I'd be interested in reading them. My cousin live in Las Vegas too.

Thanks Andrea

 



"Life is too short"


Nan2
Regular Member


Date Joined Nov 2004
Total Posts : 175
   Posted 7/11/2005 5:27 PM (GMT -7)   
Have Faith...I can't remember offhand what part of my PFT's were abnormal...I do have the records so I can look...but it pointed them to restrictive airway disease. They were not suspicious of cardiac probs. Once they opened me up...the report says my lungs were adhered to my heart so no wonder I was having trouble breathing! All is well now...normal PFT's.

My advice would be to ask where the nearest center is that works with constrictive pericarditis and I would ask lots of questions about how much of it they see. Then I would go there and get a second opinion. If they tell you it's not CP...great!...but if they catch it early...all the better. And relief for you. My heart rate was in the 80's-90's too...now down to 60-70. BP was also high. My symptoms came and went. I had "flare-ups" where my symptoms were worse. Keep us posted!

p.s. echo on the request for the article! I'd love to read it!

Nan

bkraber
New Member


Date Joined Jun 2005
Total Posts : 11
   Posted 7/12/2005 4:09 AM (GMT -7)   
Hi All,

I am off to St. Mary's for my "procedure". Just did the soap and the junk in the nose. Will let you know how things go as soon as I can. Thanks for the prayers and support!

Brenda

Teri16
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Date Joined Dec 2003
Total Posts : 5230
   Posted 7/12/2005 12:59 PM (GMT -7)   
Best Wishes to you, Brenda!! tongue
 
Big Hugs, tongue Teri
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:

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