Need surgeon recommendation for port-a-cath insertion Connecticut

[3kids4me Super Moderator and Super Mom Find all posts View Profile Close 3kids4me]

I know this is a long shot, but...

Rachel's port-a-cath has failed again (this one lasted a year and a half). We have been getting them put in at a children's hospital in New York City, but last time we were there, the red tape was crazy, and the surgeon seemed to feel that she was "too big" to be going to a children's hospital. Still, they are so much more accommodating than adult hospitals...but his attitude made the experience not good last time and so we vowed to find someone locally who could do this with the same compassion.

We hadn't pursued finding a local surgeon (this could include Yale) and now her port seems to have detached under the skin. It's a bit of an emergency because she needs a working port for her meds, but I don't think it's a situation like we had a few years ago, where the catheter severed inside her and a piece got lodged in her heart. (That was truly awful.) Still, because the same thing happened to the replacement cath that time (piece hanging by a thread but we caught it before it detached), I always get scared when there is a malfunction.

I know this is a long shot, but anyone out there a nurse or doc in CT who know a surgeon who is very good and also attentive and good with "not quite adults"?

Thanks so much,

Sharon

[taffy19 Gold Contributor Find all posts View Profile Close taffy19]

I can't help you with a recommendation but hope that one of the nurses will. Does Rachel have to have this Port-a-Cath inserted under her skin for her medications for the rest of her life? Poor girl.

How are you feeling, Sharon?

[3kids4me Super Moderator and Super Mom Find all posts View Profile Close 3kids4me]

Hi Emmy,

They could possibly do it through a vein but it's a thick medicine and takes 12 hours to infuse. At this point, it does look like she will have to have it forever.

I'm still having some issues (nerve pain down front of leg) but am better. My issues take a back seat to Rachel's. Thanks for asking.

Sharon

[Fern Senior Member Find all posts View Profile Close Fern]

I don't have any suggestions, but I hope you find somebody who is compassionate and skillful. A year and a half is a pretty short time for a porta-cath. Jerry's next to last one lasted over five years, till the doctor wanted to remove it due to age. When he got it out, it was still fully intact. And less than a year later, guess what? He needed it again.

Anyway, good luck with your search, and try to find one through oncologists. Our surgeon is described as having "gifted hands."

Please don't neglect your health, either. It is easy to do, but believe me, nothing good will come of it.

Fern

[3kids4me Super Moderator and Super Mom Find all posts View Profile Close 3kids4me]

Thanks Fern.

It turns out that a breast surgeon I have seen, who has wonderful reviews, will put in port-a-caths. We will be seeing her tomorrow and hopefully that will be the answer. Today we saw the surgeon who did my hernia surgery in February, and he was very nice, but doesn't seem to have a lot of experience with ports. I'm told that some people get them put in by radiologists while awake, but Rachel would never be able to tolerate that.

Trying to manage my own health needs as well, and thanks for reminding me of that.

[shaggy Moderator Find all posts View Profile Close shaggy]

Sharon, you need a hug shaggy

[SOS8260456 Moderator Find all posts View Profile Close SOS8260456]

Thanks Fern.

It turns out that a breast surgeon I have seen, who has wonderful reviews, will put in port-a-caths. We will be seeing her tomorrow and hopefully that will be the answer. Today we saw the surgeon who did my hernia surgery in February, and he was very nice, but doesn't seem to have a lot of experience with ports. I'm told that some people get them put in by radiologists while awake, but Rachel would never be able to tolerate that.

Trying to manage my own health needs as well, and thanks for reminding me of that.

Sending positive thoughts your way...hope this is the solution for her.

As for the dr. who thought she was too old for a children's hospital

Hope this doesn't affect your upcoming trip.

[Glitter Brunello Super Moderator Find all posts View Profile Close Glitter Brunello]

So glad you've found what sounds like a solution, good luck with everything!

[IreneLF Senior Member Find all posts View Profile Close IreneLF]

Glad to see you;ve got someone who should be able to do it.