mom worried about her son

My son has had a pacemaker since he has been 5 he has sick sinus syndrome from repaired Transposition of the greater arteries. He is 21 now and recently had to have surgery. He had a thoracotomy to implant a epicardial pacemaker. He had surgery 3 weeks a go. He has had complications that have included effusion on his lungs and now a minor case of pneumonia ( by the way pardon my spelling) What I am most concerned about is that his arm is swollen about 1.5 times its normal size. I understand the concerns over the lung issues but even though he has been back in the hospital 2 times they do not address it. Has anyone had an issue like this? He remains in a lot of pain. Off and on fevers seem to be improving with latest antibiotics. Arm is as big as ever.

6 Comments

Arm swelling

by Shepheart - 2013-09-19 01:09:25

I have some swelling of my left arm, the side my pm was implanted on. It was caused by clots in the subclavian vein near where the leads went in. I first noticed that my jugular vein was swollen and it was months later that I noticed the swelling in my arm. Switching from warfarin to rivaroxaban maybe reversing the condition or it could just be the passage of time. I had ultra sound on my shoulder today as they were checking to see if the clot issue had disappeared. Some swelling may be permanent. My condition has never been painful. You should ask about clots.

Wishing you the best,
Shepheart

other infor

by mom - 2013-09-19 01:09:25

Is a doctor that specializes in Virus' a Infectious Disease doctor? They already did that when he was in the hospital. That doc wanted to d/c all antibiotics and other meds. Surgeon disagreed and kept him on levoquin. He was on 4 antibiotics and those were all discontinued.

thanks for response.

by mom - 2013-09-19 01:09:26

They did doplers on his legs to rule out clots but not on his arms. He has had cultures done now twice. The fevers are low grade and he does have a minor pneumonia. He did not have an Arterial Switch because his underlying capilary system would not support it.( I don't know what that means but I do remember being the reason)He had a Senning and the original lead was through the baffle. This all started because the original lead spiraled and disconnected. They tried to laser out the lead but failed. He lost a bunch of blood and they had to close him up without a pacer for about 3 days and then did the thorecotemy and placed the Epicardal pacemaker. It was not the original plan. He has had a blocked vena cava before that has required balloon procedure. I believe it gets blocked from scar tissue. What is odd is that only the arm on the left side is swollen .

clot

by Tracey_E - 2013-09-19 07:09:01

They need to rule out clots.

Fever can mean infection. Has he had cultures rather than choosing a random antibiotic they think might work? I would insist on that asap so you don't waste time treating with the wrong med. If he does have an infection, I would consult an infectious disease specialist. This is not a cardiologist or ep's expertise.

good luck to your son. Hope he is on the mend soon.

Why did they do an Epicardial?

by PacerRep - 2013-09-19 12:09:23

did he have an Arterial Switch when he was younger or did this happen before 1987? If he had a mustards or sennings proceedure i understand.

Is any of his vessels blocked? that could account for the swelling. Either way I would get it looked at by an ID doc as Tracey suggested.

Gotcha

by PacerRep - 2013-09-20 12:09:45

Epicardial makes sense now. Sorry your going through such a rough situation, TGA is a tough condition, especially with the baffle's. ID docs deal with virus's, well most of them. If its viral cardiomyopathy that falls under the cardio side. It all depends where the virus is, but usually ID docs are involved.

good luck

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