Pericardiectomy

Funny you should mention that Michelle...I just got a call from Mayo for my 6 month follow-up in June and they said they wanted to cancel til the end of the year..."if I'm doing fine"...I feel a lack of follow-up too...even though I do feel GREAT...I still have a lot of questions...can I have more children?  Can I drink any alcohol?  Can I push my heart rate with exercise?  Is my liver back to normal size (mine was 2-3 fingers too, Cathy)...etc etc...so many questions!  I don't want to wait til the end of the year...we'll see.  They are calling me back.

Cathy...you will be on a respirator when you wake up...but they wean you off right away that day.  I barely remember that moment...I know I tried to pull the tubes but the nurse is right there.  The line in your neck is a central line...they keep that in for a couple days.  I have a teeny scar on my neck from that just the size of a small freckle.  I remember my JVD was so bad that that thing was just pulsing...but now I can't even see my pulse in my neck.  The chest tubes were the worst in my opinion, and stay in the longest...you have to carry around a box of drainage fluid...kind of gross...lots to carry...the box, the EKG...but they want you to get up and move asap.  I do recommend that...get up and walk as soon as you can.

As far as pain...totally bearable...the meds are great.  More than pain, you feel fragile with the sternotomy...moving in bed was slow.  I think my first C-section was worse for pain.  I imagine the approach under the breast would be less painful.

As far as Mayo goes...Hartzell Schaff is the head of the dept there now.  He has done research in this area and does around 60 of these a year.  He didn't even consider the under the breast approach for me...so that may be worth clarifying for you.  I think he is well known...

I would ask your doc what the rationale is for his surgical entry.  Do not be afraid of the sternotomy...it is definitely bearable if they recommend it.  It seems like it would be a lot easier if they had a great view of the heart.  But, that may be his specialty...and if he is confident it is the right approach...that is great!

I was comforted by these little details...so if I'm too graphic, let me know.  I'm in the medical field so I like that stuff.  I am mad at myself that I didn't ask them to videotape the surgery!  I would have loved to see it.  The PA that discharged me watched it and said it was so cool, as soon as he made the first cut...my heart sprang through like "I'm free!"  But, I realize this is not fascinating to everyone :)

By the way...they don't put any of these lines in til you are out...catheter, IV's, neck line...etc.  I thought that was nice of them :)

Hang in there!

Nan

Woohoo, Nan!!

An early congratulations to you on almost 6 months post op!!  That must be a wonderful feeling to say that?! 

Hugs, Teri :)

WOW Nan, I really appreciate the details, and YES, I want to hear it all...the good, the bad and the ugly, I really do not want any surprises, and want to know.  I have kept my head buried long enough, and its time.

I can't believe you could watch the surgery, I don't think I could do that, I can't even watch the surgery channel with open hearts.  SOmething about the heart, and the way it moves gives me the heebie geebies...BUT, I do like written details a lot!

I can't believe I actually wish the surgery was tomorrow, I am so anxious to have this behind me now, where before, I tried to think of anything and everything to get out of it....I am ready, tired of worrying about it.  And I have such great hopes now after reading your stories, I can't even begin to explain the courage you have given me.

I am just waiting to hear back on the date, I will inquire about the technique and why....

thanks guys!!  YOUR the best...!!

Cathy

Cathy, when I had my bypass done last August, I had no time to prepare~perhaps in some cases this might be better.  They were trying to place a stent when the artery ruptured, so I had to have an emergency bypass.  The last thing I remember is them telling me not to move, as the LAD was tied together with only a thin wire.  I said goodbye to my husband, whom they had brought down to the cath lab, and I told him that I loved him and I was suddenly completely at peace.  I realized that I was okay, and my family would be okay.  It was now up to the skilled surgeons and the Lord up above and I was in very good hands.

I wish this for you and as I said before, we'll keep those positive energies and thoughts going for you as well!

Enjoy your special dinner with your friends and loved ones!

Thinking of you and sending Big Hugs, with Love, Teri

WOW, I hope I have that feeling, and PRAY that I will!

WELL GUYS.........CLEVELAND CALLED THIS MORNING!!!  We were hoping for the first week in JUNE and they said that it was impossible to coordinate the two surgeons and the cardiogist at that time together, soooooo, the DATE SET IN STONE is now JUNE 27th.  They told me to be there on the 21st for an echo, ekg..blood test, mri....22nd, meeting with cardiogist, and nurses, 23rd, cardiac catherization, 24th, meeting with cardiothorasic surgeon, more tests, 25th, open for any additional testing...26th SUNDAY...and then the lovely 27th...........NOW, I even have more time to think about it........UGGGGG!

BUT, nothing I can do, she said this was the best they could do, and that this is it.....no going back.

Somedays I wake up and I wish it was tomorrow; and somedays' I wake up in a SHEER PANIAC....feeling trapped and suffociating.  I hope the day I fly out is a day I am wanting it over with, I never know from day to day how I will feel.  Somedays i want to crawl out of my skin and I ask pathically, "why me", will, I know, why not me, and I know that worse things happen to people, I just think I have had way too much time to think about this, and I wish I could have gone in as an emergency; no time to overthink things and be terrified.

I really believe had I not found you guys, I still would be postponing surgery, as I could not find the courage with the one story I had from Sammy who did terrible in the surgery.  Had it not been for your positive stories I know I would still be trying to find a way out, and I dont' want to do that anymore, I want to be on the other side, saying what Nan is saying, and that she is doing good and so glad it is over with.  I don't know how to get rid of the bad days, other than to pray, and to believe that if I do not make it though this surgery that God has a plan for me; and that I am needed somewhere else for another purpose, and I do not want to question God's intentions.....

Thank you Nan and Teri for your strength....I don't know what I would do without you both!

luv ya

Cathy

I have tried very hard to stay busy, and that is how the HOUSE deal came along.  I honestly thought it would be a great diversion; and I really wanted to build something that would last for my boys, to live in the house that MOM BUILT.

NEEDLESS to say, i was in WAY over my head, but, BOY< was it a diversion.  IT caused me to much grief I  did not even have time to think about the surgery.  WE are however moved in now;a nd have been in two months.

I thought my husband would help; and he completely dropped the ball.  HE did not help at all, and our marriage was crumbling before this all happened.  WE have been married 19 years...my whole life!!!  AND the last SIX years, he just crawled in a shell; and has yet to come out.  BEfore I was diagnosed, I was able to leave him, and he pulled this pathetic act, and reeled me back in with all these promises, that lasted about six months.  Its too bad because I wanted it to work, but am SO over it now.

I know I can not get a divorce before, so, when this is ALL over with, that will happen, and I look forward to a new life.  I can't post on here what he has done with his life, but if you email me personally I would be happy to tell you what he has done.  Its such a shame.

AT any rate, I was stuck building and designing and purchasing everything on this house alone.  I was bound and determined to finish it and I WAS BLESSED to be able to finish it.  THE CRAZY thing is, the symptoms did NOT get out of hand until the house was finished a month later.  IT was like GOD let me hold on until it was complete, I am so grateful for that.  I look back at what I have done the last two years and I can't believe it, I could NEVER do that today.

I also started a business online, so I could be self sufficant once the surgery is over; and have saved money to be able to make it on my own.  Once this is behind me, I will have a whole new life to look forward too..

Teri, how did your artery rupture?  DO they know why?  DId you have heart disease leading up to this?  Are you completely healthy now, or will it cause problems in the future?  Did it come completely out of the blue or did you have symptoms?

WE are staying at a hotel that is afflicated with Cleveland.  They offer a discount to patients and friends and family of patients.  They offer shuttles to and from the hospital every ten minutes so its pretty cool.

The boys are coming with, BUT will leave quickly, I am going to let the doctors decide on when it would be best to send them home.  I wasn't sure I wanted them to go.  THE GUILT I FEEL putting them though this is horrible, I can't stand causing my son's grief, and I wish I could change it...THEY INSIST ON GOING, and a friend whom is  a nurse told me that they should go incase the worse should happen and I have an opportunity to say goodbye to them.  :::shutter:::::

I cried today, and normally I do not.  I wanted to crawl out of my skin.  I am trying to stay strong,a nd LORD knows you are all helping.

GOD BLESS YOU!

Cathy

Hi Guys!  So glad to hear everyone is doing well.  I went to my surgeon  and he told me that he was going to do another larger pericardial window rather than the full pericardiectomy.  I was happy about that.  It was scheduled for 4/27 but I ended up calling 911 on 4/21 with severe chest pain so they bumped up the surgery.  He cut under my entire left breast and I have two tube sites.  A little tender but surprisingly seems easier than my first pericardial window.  He went through the sternum the 1st time.  I still have really bad heartburn.  Anyone have this?  They put me on Prevacid but it doesn't seem to make a difference.  I guess after this heals, I'll be off to a GI doctor.  I'm hoping they take me off the steroids.  They increased my colchicine so I'm pleased with that.  Praying this does the trick once and for all ...just grappling with the heartburn.  STAY POSITIVE!

Wow, Frand~gee when you take a little time off of the board here, you really go big! I'm so very happy that all went well this time for you and I'm sorry to hear about that heartburn~it can really be the pits.  Did you have a tube in your throat?, were you sick to your stomach after the surgery?  I'm just wondering if a new med or some irritation to the esophagus could be causing this?  Make sure you call your Dr. and ask them about this, they can at least prescribe something for you to ease it.

I just reread your post and I do know that steroids can upset your stomach!  Maybe when you go off of them that'll ease it up?!  There are so many medications for them to try to help with this, even Zantac has helped me the best.  I have GERD and a hiatal hernia.

Take it easy and let us know how you're doing?!

Hugs, Teri

Cathy & Fran,

How are you both doing??  Haven't heard from ya'll in a couple of days~please keep in touch?!

Hugs, Teri

PS  Michelle don't forget you are always welcome here at HW anytime and thank you so very much for coming here and offering so much support!! :)

I am still with you all, and doing well!

Its funny, when I started the house everyone thought I was crazy, and I probably was, to take on a task of that magnitude was INSANE.........I think almost I felt so OUT OF CONTROL with things, and this was a way to take control again, and to just prove I could do it.   Boy did I do it.......it was crazy...my husband did not HELP with one thing, and my contractor was the WORST.........I hired all the subs and supervized them myself, I look back and I have NO clue how I did it, it was HORRIBLE.  AS bad as everyone say's it is to build your own house, it was 100% WORSE!  Everyone took advantage of me because I was a girl; and the house went over budget so badly I am embarrsed to even tell you...........BUT, after all is said and done, I have a house that is DONE now, that my sons can live in.........and know that their MOM built it for them!!

I don't think I will keep the house Frand after, its too big for me, and its worth so much more than it cost me to build now, and I will need the funds to survive AFTER all is said and done with the divorce....my husband and I have been married for eighteen years, and all of his promises have been empty.  I had a clean escape some years ago, and I blew it by listening and believing him, BUT, this time I won't.  I think he thinks he has me under his thumb now because of my heart, he figures I will NEVER leave now.  BOY is he in for a big surprise.  He literally makes my skin crawl........BUT, that is the least of my problems for now....

I have been having a LOT of shortness of breath lately........I don't know if it is anxiety attacks, or just symptoms from the actual heart disease....but, it feels like someone is sitting on my chest....

I honestly never thought I would say I am looking forward to the surgery, BUT, I am.......anxious to get busy living!!!!!!

WE are staying at the INTERCONTIENTAL HOTEL Teri.....its a hotel that is affliated with the Cleveland Clinic, and they have a shuttle that goes back and forth to the hospital, so its pretty cool.  That is where we stayed the last two times there.  I have to be there on the 21st, altho surgery is not until the 27th, but they have me scheduled for everything from MRI's, to ECHO's, CARDIAC CATHS, EKGS...chest xrays..blood, you name it.  I am having a problem with platelets, they keep taking dives, I am down to 77,000, when normal is between 135,000 to 450,000.......they will have to give me platelets before and during surgery.  I HOPE I FEEL THAT FEELING OF PEACE and not paniac when I go in.......but I do know one thing, I will NOT show fear in front of the boy's...........I could not talk them into staying home...they are going.........UGGGGGGGGGGGGGGG!

God bless you all, and I am so grateful for you guys, I don't know if I would have the courage to do this if not for your stories and support...............thank you from the bottom of my hardened heart!!

xxoo

Cathy

Hi DianeS and Welcome BAck to HealingWell!!

I'm so glad to hear from you and that your husband is doing well!!  That was a lot of fluid they drained, but I'm so glad that all is fine now...please keep in contact and anytime you feel that you'd like to jump in here anywhere, please feel free to do so!

Best wishes to both you and your husband.  Hugs, Teri