we are new at this

hi, my name is buffie and i'm 45. my awesome husband is kevin and he is 48. we are waiting to receive the date his PM procedure, which will be soon. kevin served in the Marines and spent 18 months of his 4 years of service in the Phillippines, where he and his doctors are quite sure he contracted the disease Sarcoidosis. it is an inflammatory disease that affects one or more organs, but most commonly the lungs or lymph glands. the heart in only about 5% of the cases. kevin was diagnosed with his left branch bundle block in 03, but the Sarcoidosis was not diagnosed until 07. originally, the doctors told him he had cancer, but, after a biopsy, it was confirmed to be Sarcoidosis. over the last few years other symptoms have developed such as the tremors in his right hand, open small blisters on his hands that seep and itch and are very uncomfortable, and night sweats. he received his MRI on oct. 3rd and was told that, yes, he will be receiving a PM, but that for some reason the Sarcoidosis is no longer threatening his heart. you can imagine our joy!! kevin and I found each other late in life after much "heartache", pardon the pun. we have 6 children between us and 3 grandchildren, and one more on the way. we've heard different things on restrictions he may or may not have. this website has helped so much! we feel very fortunate to have found it. we enjoy reading the postings and hope to learn more and maybe find new friends. for anyone interested in more information on Sarcoidosis, you can contact the Cleveland Clinic Sarcoidosis Center of Excellence, or call them at 216-444-3613. thank you, and we will stay in touch!

7 Comments

Sarcoidosis

by PacerRep - 2013-10-05 05:10:13

Usually people that have this disease get an ICD if it has spread to the heart and not just a pacemaker....coupled with the LBBB you spoke of he may be getting a BiV device. Do you know what his Ejection Fraction is? Also did anybody use the term "defibrillator" when speaking about the pacemaker?

Hello and welcome!

by SaraTB - 2013-10-05 05:10:39

Hi Buffie and Kevin and welcome to the PM Club - I'm so sorry to read about Kevin's experiences but very glad you are evidently in excellent hands with the Cleveland Clinic. It sounds like good news that his heart is not being affected further by his condition.

No doubt you'll have questions as he approaches his PM implantation, and afterwards - feel free to post any and all questions you have here: we've all been 'first timers' and completely understand how strange it can feel. It's a welcoming place, here, with many members with wild senses of humour, but don't let that worry you: we try and keep things light when it's appropriate :)

Best of luck, and keep us posted (and thanks to Kevin for his service).

Well that's good news.

by PacerRep - 2013-10-06 01:10:38

If he doesn't need a defib then the Sarcoidosis hasn't spread into the heart. An EF of 40-45 will also keep you out of a defib. Sounds like they are doing a good job.

I would make them explain to you the potential negatives of a LBBB and how it may effect the heart in the future.

I hate to micro-manage a lab but this is good information for you. When putting a pacemaker in with a LBBB there is an additional complication during the procedure that way to often gets over looked by the staff. Please Please Please make sure your voice is heard here....Prior to going into surgery make sure that YOU and your husband verbally tell the nurse and the doctor that you want external pacing pads on him.

During a pacemaker implant a lot of places don't use them, which is fine...unless you have a LBBB.

The only way the electricity is getting through to the ventricles is by the RBBB on your husband...the RBBB is located in the Right ventricle...He will be getting a lead in his Right ventricle....if this lead rubs up against it and "tickles" it, he will immediately go into a temporary complete heart block (don't worry the RBBB usually comes back within 60seconds or so).

The external pads are an additional safety that is critical to his surgery, make sure they put them on. I've made labs put them on after they have already prepped (they are not happy about having to re-prep) if they forgot and its saved the day way more times than I can count.

Just some friendly advice. Using pads is not standard on a pacemaker implant unless there is complete heart block, so make sure you remind them to use them.

Clinic

by ohiolaura - 2013-10-06 08:10:21

So are you Ohioans,or just at the Clinic because your close to it? I had my Pm put in there last summer,and have to say really happy with the surgeon and my EP Dr.
Just curious,Im about 1 hr south of the Clinic.
Laura

ohiolaura

by buffie - 2013-10-06 09:10:30

kevin is from Ohio, Wooster area, born n raised. we live in Michigan now, where I was born n raised. he wasn't seen at the Clinic, we were just able to receive a lot of information from them. he receives his treatment from the VA hospital in Ann Arbor. but, as he would say, " Ohio is the friendly state because it says hi! " ( yeah, he really says that! ) buffie

Ohio Cheryl

by Cheryl B - 2013-10-06 11:10:07

Welcome Kevin. I, too, have sarcoid that went to my heart, and now I have an ICD. I also go to the Clinic, Laura. I live about 45 mins. away. My local hospital sent me there because they didn't know how to treat me because they didn't know what the heck was going on. Thankfully I live close because I really like my docs and the care I've received. I only get heart palpitations now when I open their bills.
Just wanted to say hi to you, too, Kevin, and let you know you can send me a post personally on this site if you have any questions on the sarcoid. I was told not to go on sarcoid websites because they are doom and gloom. I am taking that advice. I have read the literature I was given and spoken to a few people I met through this site who also have heart-related issues due to sarcoid. Welcome. You will find so much help here. I am so happy my sister signed me up. I was too angry when all this happened, but she took over and did the work, and I have gained so much knowledge and help here.
Cheryl B.

defib/PacerRep

by buffie - 2013-10-06 12:10:06

hi, and thank you for asking. his Ejection Fraction is between 40 and 45, and yes, the doctors originally thought he would need a defib, but now they are thinking he does not. even though he's had his LBBB and Sarcoidosis for years, everything just started happening very quickly in august of this year. all his treatment is through the VA clinic in Ann Arbor, and I must say, they have been wonderful, but it has been a lot to digest.

You know you're wired when...

You have a $50,000 chest.

Member Quotes

Yesterday I moved to a new place in my mind and realized how bad I felt 'before' and the difference my pacemaker has made.