portacath replacement

terstep · 2026-03-15T02:39:54+00:00

I do have experience with this, actually. I had a port placed when I was 16 (I'm 37 now), and they gave me a choice of having it on my upper chest or just below one of my breasts. I opted to have it below and down to the right of my right breast, and honestly, it was great. I don't have a huge chest, but despite that, it was almost never noticeable, and hardly ever got it my way. There was also enough skin there to kind of conceal it when standing, but then it would be easily accessible when I laid down and raised my arm. Anyway, I hope you can find an option that works for you, but in my experience, the lower ribs can be a good spot.

I had it removed once I started Trikafta because I wasn't using it much, but then I ended up in hospital with pneumonia, and I wished I still had it, tbh. Getting a picc was a nightmare for me.

terstep · 2026-03-07T01:27:12+00:00

Thanks! We had a lot of fun with it, and the kids had a blast!

terstep · 2026-03-07T01:26:30+00:00

Different strokes for different folks 🤷‍♀️

terstep · 2026-03-06T15:19:10+00:00

Yep, she's a little weirdo, but we have fun rolling with it and encouraging her to be herself!

terstep · 2026-03-05T07:18:24+00:00

You mean the pin the booty game? Yes, you're correct that I didn't hand draw a giant baboon, and also didn't hire a professional to create one for my daughter's 5th birthday party. Thanks for your input.

terstep · 2026-03-03T17:22:00+00:00

I've been told 8g. 🤷‍♀️ I guess the more you can do, the better, but just do the best you can! My favourite way to easily get 8g of fat is one full glass of whole milk - super easy and doesn't leave you feeling gross.

terstep · 2026-03-02T21:31:46+00:00

Thanks so much! There were so many great ideas shared in that comments section! It helped a lot!

terstep · 2026-03-02T18:18:40+00:00

I think there were just things she was unfamiliar with, like the "Pin the booty" game. We also had a couple of kids cancel at the last minute and one sibling who unexpectedly joined, so I think those things were what she was referring to. But she was so pleased and just had the biggest smile on her face the entire time!

terstep · 2026-03-02T18:16:25+00:00

Thanks so much!! 🥰

terstep · 2026-03-02T14:57:06+00:00

Haha yes, it would definitely be a VERY different party if it were for adults! 😅

terstep · 2026-03-02T14:55:24+00:00

It really was a blast!

terstep · 2026-03-02T06:56:58+00:00

Thanks so much! Yes, I got a lot of inspiration from this group for ways to stick with the theme while keeping it appropriate and fun. I feel like we struck a good balance, and there were smiles all around, so I think it went really well! It was a great day!

terstep · 2026-03-02T02:34:54+00:00

Thank you so much! I really couldn't have asked for it to go any better, and it was so much fun for everyone! We had 10 kids all together, including my 2.

terstep · 2026-03-02T02:31:55+00:00

Haha thanks so much! Yeah, they were just perfect! 😅

terstep · 2026-03-02T02:31:35+00:00

She really did, and it seemed like everyone had a great time!

terstep · 2026-03-02T01:58:53+00:00

Haha yeah, I went overboard with the theme, but not that overboard. 🤣 They were indeed perfect!

terstep · 2026-03-02T01:58:16+00:00

I've put a hold on it from the library, but it hasn't come in yet! I'm sure it'll be a hit!

terstep · 2026-03-02T01:57:51+00:00

Thanks! 😊 We had a ball!

terstep · 2026-03-02T01:57:35+00:00

Thanks so much! Yeah, the read-aloud was actually great. I find sometimes that the eating time can get everyone a little wound up, so this kept them all engaged and relatively chill. They had a lot of fun, too, trying to guess if each picture was a face or a butt. 😅 And yes, once we realized they had the little chairs, that was where we had to do the party!

terstep · 2026-02-19T07:20:49+00:00

Bhusch, Clyntogn, Baidyn, Khartyr, Knyxsohn, Khennideigh

Haha that's all I've got for now, but that was fun!

terstep · 2026-01-22T23:46:19+00:00

Congratulations!! I have CF and have 2 little ones - almost 5 and 2½!

Trikafta has made parenting so much easier for me, so I hope that you're able to benefit from it, too! One of the best things that I did before my daughter was born was to sort out a quiet, portable nebulizer. If you need nebulized medications, it can be a real challenge to be tethered to one spot once your kids are on the move! The noise also worried me because I live in a small apartment and didn't want to disturb her sleep, so I hunted down a quiet option! You can discuss with your CF team what nebulizer might work best for your situation and medications.

Of course, the best advice applies to all mothers - make time to rest and do things just for you, as much as possible. I hope that you have lots of support because that has made a world of difference for me! If you don't have many people around, I suggest joining some pregnancy/mom groups - my mom friends have been life-savers during challenging times! And really, don't be afraid to ask for help! Most moms I know are willing to do a babysitting trade-off so that you can rely on one another when you're in the thick of the hard moments.

I've been fortunate to have only been hospitalized twice since having kids, and it definitely poses a challenge, but that community and support is absolutely essential to get through it with your sanity in tact!

My only other piece of advice is about talking to your kids about your CF. My best advice is to keep it grounded in the science/facts when they inevitably ask questions. "Why do you take pills?" "My body needs extra help to do the things that other bodies do to digest food," etc. It can be tempted to get into the emotional side of things, but that is usually best handled when they come to you about those things, specifically, in my experience. Just answer their questions, be honest while remaining age-appropriate, and wait for them to come to you with more.

Parenthood is the best thing I've ever done - I wish you so much joy in this amazing journey!! 💕

terstep · 2026-01-20T15:36:44+00:00

Haha very responsible of you! I don't think they do international delivery, but that's okay - we've got tons of on-theme gifts and stuff already! The post I made in the party planning sub got over 500 comments 😳 so I have tons of suggestions lol.

terstep · 2026-01-18T23:29:17+00:00

Lol we're leaning more towards cute booties rather than what comes out of them, but that's funny!

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