Pericarditis & Pericardiectomy pt. 7

Hi Sherwood and all...

I was catching up a bit on the last thread...I haven't posted for a while.  I'm an old-timer...2 years post pericardiectomy...I still feel great and recently qualified for regular old health insurance vs high risk so that was exciting.  I know there are others on this thread from the UK...I'm blanking on the names right now.  Have you read back quite a bit?  My advice is get it done asap...it doesn't go away.  It's risky but so is waiting.  All the best to you.  If my story would be of any help to you, I'm happy to share.  Hope everyone is doing well...would love to hear from the old crew!

Nan

I was in ICU for 1 day...I woke up and I was still intubated but not for long.  That is a foggy memory.  My surgery lasted about 3 hours.  They went in through the sternum.  I was on bypass for 32 minutes...going in they didn't know if I'd need that but I did.  I was in the hospital for 5 days.  My recovery was great.  I was up walking the day after surgery.  I felt very fragile but no pain unless I sneezed (I was terrified of sneezes).  I stayed on top of my pain meds so the pain wasn't too bad.  The biggest surprise and the worst thing right after surgery was my chest tubes...they stayed in for 4 days...very gross.  Those wounds took a long time to heal too.  Now I call them my bullet holes in my stomach :)

I was 36 when I had my surgery...2 little kids at home...I couldn't hold my 18 month old boy for 12 weeks...that was tough.  You can't lift anything over 5 pounds for 6 weeks...you would be surprised at what that limits you for lifting.  My scar healed okay but I pushed myself too much and it broke open in one spot so it is uneven but my own fault.  My 6 month and 18 month followup appointments were totally normal for heart exam...all pressures, size and function was normal...which was a huge relief.  I don't need any heart medication.  I now need thyroid medicine as I became hypothyroid after surgery.  Interestingly, about 7 out of 9 of us on this site became hypothryoid after surgery.  Have you had a chance to look back at some of the old threads.  I can't tell you what a relief it was for me to find this site right before my surgery and read about other young people who "survived!" and "felt great!".  I will say that I have felt great ever since surgery.  I hadn't realized how lousy I felt until I felt well again.  I'm so thankful they figured it out and that surgery was a "fix" for the problem.  How long has your husband had symptoms>  How old is he?  My husband will relate to you during the wait...it was the hardest time for him....much harder for you guys than us patients I think.

I hope this is helpful...let me know if you think of anything else.  When is surgery scheduled?  I'll certainly keep both of you in my prayers.  Stay in touch.

Nan

Hi Nan, He is going in on 24th Jan, having surgery p.m. on 25th. Surgeon says could be a long wait but he will come and get me as soon as surgery is over and tell me details and walik me to ICU. He has also been told could only be 5 or 6 days in hospital. Only worry is liver emlargement caused by engorgement. They have rooms on site that relatives can stay in so will be there for the first 3 nights. I don't think I would be fit to drive! I can't tell you how much it means to get some support like this. No sites at all in UK and no groups etc. I'm thinking of setting one up when this is all done. Hopefully in 2 weeks I will be saying 'He's feeling battered but better'. Will let you know as soon as I can get to net access. 

Mant thanks Sherwood. X

Just to let you know, I'll be thinking of you and your husband on the 24th / 25th. Keep positive.

It may well be worth setting up a site  / group for similarly affected people, there is, as you say, very little available in the UK.

Regards and best wishes to you both,

NyonUK.

Hi Sherwood;

No email as yet. I'll keep checking though.

Nyonuk

Welcome!  I remember the relief of finding this site right before my surgery as well.  I also have young children and my youngest was 18 months old when I had surgery...you get creative getting on your knees for hugs and holding them on your lap with pillow protection :)  All I can say is the time goes fast and you'll be full strength before you know it.  I was 35 years old when I had my surgery...I'm 2 years out now and like many others on this site, have only a persisting thyroid deficiency which I take meds for...otherwise, no other limitations or medications.  Let me know if I can help in any way...God Bless you next week...I'll be thinking of you and praying for a successful surgery and a speedy recovery!

Sherwood!

That same prayer goes for you...It is certainly a scary experience.  I remember looking forward to waking up and just having someone tell me "it went well"...then I didn't care about pain or anything else, I knew I could get through it if the surgery went well...recovery was just a matter of time.  Tell your hubby to make friends with a pillow and squeeze it tight for the first few weeks...I think I slept with my heart pillow for over a year...it was hard to be comfortable, especially laying on my side...anyway...please post when you have a chance...

Good luck you guys...we'll be here to hear how it went and to support you through your recovery!

Nan

Thank-you for your words.  I spoke to the surgical team end of the week - and I was reassured that it is a difficult road to recovery, but that it is worth it long term.  I asked about thyroid issues and was told that I should be fine?  I am going in with a positive attitude.  I understand the need for creativity with my kids. 

Thank-you all in advance for all your positive thoughts.

Jeatonov