#portacath

[talkethto-thehandeth]

first port access tomorrow 😵‍💫

[heyitssashag]

I went for a 10km run, today. Afterwards, I stopped off at a local eatery where they have goats.

Yesterday, I had my CT scan. The small hospital I was sent to insisted that they needed to poke me twice (to see if they could get a vein) before calling in a nurse to use my port. This pissed me off. I’ll be requesting to go to one of the larger hospitals from now on. Anyway, I told the tech to use my left arm. I haven’t used this arm in years as the veins were done. (The anesthesiologist couldn’t even get a vein when I had my surgery two years ago in that arm.) So, I let the tech do her thing. Well, she got a vein right away and there was no issue. I was in shock. I asked her if veins can heal themselves. lol. Apparently, they can partially heal and even reroute. I was also very hydrated, which probably helped. The body is quite a miraculous thing. I’m still requesting to have my CT’s at one of the bigger hospitals from now on, though.

Tomorrow, I have my bone scan at a bigger hospital. They have their own dedicated IV team so I should be able to get someone to access my port for that.

Originally, I got the port in because it was recommended to me by the nurses. At the time, I was getting monthly IV bone strengthening treatments (now they’re every 3 months). I was also able to get my labs done through the port along with contrast for my regular MRI’s (which I don’t get any more). I also used it for my CT’s and bone scans every 3 months. I was living on the mainland at the time. Things are a lot different on the island due to staffing shortages.

My right arm also had a bunch of lymph nodes removed so I wasn’t supposed to use it to get poked as I was at risk for lymphedema. However, it’s been over 6.5 years and I haven’t got it.

Now, I’m wondering wtf is the point of having the port. It’s easily seen and ugly. It would be wonderful to get this thing out if I don’t really need it. But, then again, if the line of treatment I’m on definitely fails, and then the next line doesn’t work (which will be a pill), I’ll be on chemo and will be relieved to have kept it in. Getting it taken out and then reinstalled can be risky.

So, I guess I’ll wait for now. The day I get the port out will be the day I think I’m cured. Which is wishful thinking...

While I’m wishing for stuff, I would also seek out a competent plastic surgeon and get some boobs put back on me. I miss them and wearing prosthetics suck. I’m still bitter with my plastic surgeon who talked me into implants - only to have them recalled by the government because they caused cancer. I wanted a type of surgery called DIEP flap where you use your own fat/tissue - no implants. She made it out to be an excruciatingly complicated process and getting implants was way easier.

After I went flat, the surgeon told me if I ever change my mind and want them back she could do it (so it’s possible) - but I would never go back to her. She did a good job but I definitely was sad after seeing myself in the mirror. I was sick of surgery at the time and just wanted to move on with my life so I opted for going flat. I had my explant in November 2019. Just over a year after I got them in. I have told myself over and over that having breasts does not matter. I’ve told myself that boobs don’t define who I am. But, I’ve never gotten used to seeing nothing there. However, having those heavy implants in while dealing with my neck fractures/surgeries would have made the pain even worse.

So everything happens for a reason.

After my run today, I had my decaf Americano and a carrot cake. The run felt good but I still get fatigued quickly due to the pain meds. If I didn’t take the meds, I would be in agony so it’s worth it to feel tired.

Last week I did 47km’s. I hope to make over 50km’s this week.

[potsiefaerie]

I have lost count of migraine-in-a-row days and my pain and fatigue are both so high I've spent most of the day asleep,

But there is good news -

I saw the Interventional Radiology surgeon yesterday and he is familiar with POTS (honestly, more familiar than my new cardiologist it seems like) and we talked through everything that's happened and he is comfortable just going ahead with implanting a new port, and we're gonna hopefully schedule it for some time in April, which is way ahead of where I thought I'd be.

[satanspersonal666]

Uhhhh so who has had a port placed and what is it like / how difficult is it actually to put pressure on (ex. Stomach Sleeping)?? I have concerns and anxiety but also need to get it placed so I gotta get over it 😅 Also I'm trying to request they put it on my left side so they don't fuck up my tattoo and because I think it would be easier for me to self-access there (that's the plan long-term since I already access my grandmother's and my infusions are gonna be long term) but is IR gonna be mad at me about it?

[cyanosisvt]

Happy Disability Pride Month!! Do your best not to earn a disabled person’s wrath (=ㅇᆽㅇ=)

art by @/enuae

[littlelorearts]

I am definitely going to be more assertive when it comes to stuff like infections in the future. Demand more tests. I mean, I had puss leaking from the incision site of my port weeks ago. Just because the incision looked better didn’t mean the infection was gone. Them not taking the infection seriously enough caused it to get so bad that it spread to my bloodstream. I was already showing signs of sepsis when I came to the ER. If I had ignored my fever and waited a few hours I might’ve died. It just pisses me off knowing they could’ve fixed this before it got so bad.

People, don’t be afraid to demand things from your doctors. It could save your life. Even if you think you sound like an asshole.

[crapchronicles]

So last weekend I had really intense gut discomfort and thought maybe my feeding tube was out of place. Now this week I’m having lots of discomfort and burping when I do my fluids through my j and I’ve had to cut my rate of fluids into a third of the previous speed. Which means I can only get a max of a little over 2 liters of fluids a day if I do them constantly instead of 3 liters like I was getting previously. I’m really struggling with the less fluids and having more POTS symptoms. Today I was like “oh, maybe my j arm is in my duodenum or stomach and that’s why I’m having issues.” I really hope that’s the case, otherwise I think I’ll need to start doing IVs again, which means getting a port because my veins are awful. That would really be a bummer because we literally gave me a GJ tube to avoid a port, but now I would still need at least the g portion for meds. I’m getting my j checked on Monday.

TLDR: either my feeding tube is out of place (easy fix) or my gut can’t tolerate my needed rate anymore (then I’ll need to get a port.)

[just-breathe-fight-cf]

Back At The Hospital For My Port!

Went to St. Anthony’s to get my Port placement.

I was awake for this procedure and will share my experience in my next post.