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Posted 10/9/2014 6:06 AM (GMT 0)
So, I made a comment a few days ago about the fact that I hadn't been in the hospital for about 3 months. Should've known better

Most of you guys know that I have a port to receive nutrients and electrolytes at night. My stomach has decided to join in with my other organs in the fun game of RA/JRA. A few days ago I started running a fever and the port was very sensitive to the touch, so no more freedom. Drs drew cultures and now it's a waiting game to find out if the line is infected or not. Of course-the rest of my system is mad so my joints are HUGE and hanging out in the dark as much as possible due to eye inflammation.

Ugh-Don't ever let me brag again... And nobody else should comment on how long I've been out either....

Jinxed again.
Posted 10/9/2014 8:50 AM (GMT 0)
I just read this. Good Lord woman....with every thing you go through, it's like life is a roller coaster.

I'm glad that you did get the hiatus that you did though. Come on. Gotta admit, that must've felt pretty darn cool.

Maybe this is (knock wood, fingers crossed, four-leaf clover) just a temporary hiccup in the flow? Anything's possible. Maybe? I'm so sorry you're going through another 'adventure'.....




M.
Posted 10/9/2014 9:30 AM (GMT 0)
Ok a set back but if we can make this a pattern, 3 months out better in now and that will clear you for both Thanksgiving and Christmas!!

I know you hate it, little guy hates it too but a port infection is dangerous and you know that's the best place for you if those cultures come back with one of the least desirable germs! Get some treatment sooner rather than later knocking it out faster and getting home and well enough to go trick or treating!!
Posted 10/9/2014 10:23 PM (GMT 0)
Ok-so the thought is that I do not have a line infection. IR took a look at the port and they think the main problem is due to using a 1in needle instead of 1 1/2in. Basically they think that the TPN, instead of going into the port and into veins, is running out of the port and into tissues and muscles-kinda of like a blown IV that swells up around the site. This would cause a fever and would be painful since the extra fluid would not belong there. I'm hoping that this is the case cause it would be an easy fix.

Just started running TPN so hopefully the next 12hrs will be uneventful. Little man has a soccer tourney this weekend that I want to see.
Posted 10/10/2014 12:08 AM (GMT 0)
rocckyd I hope that is the case and you don't have a line infection, I will keep my fingers crossed for you! You have had a really rough time of it and it is about time you get a break!

Keep us informed of how your doing, we all care about you!

White Beard
Posted 10/10/2014 11:07 AM (GMT 0)
Had a rough night. Not quite sure what is going on. TPN is running but it is painful. I've had ports for 4yrs. After accessed, there should be no pain.

Thankfully, my Drs are helping with pain relief. I have my regular pain meds-30mg oxycodone and 50mcg of Fentanyl. In addition, I now have 4mg of morphine every 4hrs.

I just want this fixed. This is supposed to be a fun soccer weekend. Little man will still be able to play, but I want to be there, too.
Posted 10/10/2014 2:35 PM (GMT 0)
rocckyd, I understand what you mean. It's like as soon as you say it has stopped raining, the skies open up and the bottom falls out. I am so sorry you're going through this.
Posted 10/10/2014 7:25 PM (GMT 0)
rocckyd have you got the results of the cultures back yet? In the past I have dealt allot with patients with Central Lines, these ports can be a real Godsend, but when they act up they can really be a pain too! I do hope you get this resolved soon! I am keeping my fingers crossed that the cultures come back negative!

White Beard
Posted 10/10/2014 7:54 PM (GMT 0)
Cultures are still negative. Good news-especially since I'm prone to fungal sepsis which is pretty much the worst you can get. I take pride and don't do anything 1/2way. If I'm going to get sick, I'm going to go all out :)

I just got back from having a picc placed. It has 2 lines so TPN can be run along with whichever med a Dr decides. Quick and easy. Now just waiting for discharge...

So, the final thought is that the needles being used were to small for the port. I've lost weight and muscle mass causing the port to settle further into the chest. If you've ever had an IV blow, you know that it hurts. The fluid causes swelling since it's no longer going into a vein. That's what happened with the port. The TPN and other IV meds leaked into the tissues instead of the vein. Now the area around the port-both outside on the skin and inside, is very irritated. Using the picc line will hopefully allow that area to heal. When all is good, the picc line is easily pulled and hopefully things will return to normal.

Thanks again for the well wishes. This has definitely been one of my shorter stays-Tues until today. Nathan is very happy since I'll be able to see his games this weekend. He tells me we are a team, and we are :)

Now it's the hurry up and wait game of the hospital discharge.
Posted 10/10/2014 10:28 PM (GMT 0)
 

  yeah That's ALL GOOD news to hear, Rocckyd!!! Nathan is spot on...Y'all ARE a team. Take care this weekend and enjoy the soccer tournament.  Y'all deserve it.

Hugs~~Dixie

 

Posted 10/22/2014 6:43 PM (GMT 0)
EMERGENCY...This poster (SoTiredofPain) NEEDS HELP NOW!

 

Rocckyd...I'm sending the "bat signal" out of desperation for Jody, who lives in Lynchburg, VA.  She is in crisis, but no doctors will take her in without insurance.  Can YOU help her?

 

I think it's worth a shot to ask.  She's in dire straits "in the floor" suffering with bowel-infiltrated stage 4 endometriosis. I know her desperation, but I'm too far away to "network" for her.

PLEASE HELP if you can.  Thanks all!

~~Dixie

 

 

Posted 10/22/2014 7:01 PM (GMT 0)
I'm not sure what I can do. I love my pain management dr and I can pass along his info, but I know he doesn't take medicaid. I don't know of any Drs in her area. She's in central VA so maybe a Dr in Richmond? That's still going to be a few hrs away, but in a city that size, you would think they'd have some sort of practice.

Maybe if she goes thru and ER a hospital might admit her? UVA and VCU are all research hospitals, but again, they are a few miles away.

I don't know what I can do to help. I can't drive long distances and I'm currently inpatient down at Duke. If you have an idea let me know. I'm trying to get sprung from here.
Posted 10/22/2014 8:32 PM (GMT 0)
Just wondering if you've been sprung from the joint yet? Woman, you need frequent flyer miles....


M.
Posted 10/22/2014 10:05 PM (GMT 0)
Hey again lady...Did you make it home okay?  I want to say THANK YOU again for your response to my cry for help (for Jody).  I posted an update of sorts on her thread.  My heart breaks for those who cannot obtain the medical care they need (and deserve).  It's tough in today's environment, for those of us who are fortunate enough to have health insurance.  It's brutal, and possibly a death sentence, for those who don't.

HUGS~~Dixie

Posted 10/23/2014 2:45 AM (GMT 0)
Many Prayers and well wishes...Hope you'll post an update, soon...Thinking of you!
Posted 10/23/2014 4:46 AM (GMT 0)
Hopefully home soon. Little man's bday is the 30th and then Halloween :)
He's been playing acoustic guitar for 2yrs. My deal was 2yrs acoustic and then I'd think about buying an electric guitar. Well-it's been 2yrs. He's going to flip out and I have to be there to see it. His instructor still wants him to bring the acoustic to lessons since it's harder to play(according to him), and to bring the electric at the end of each month. It's about to get a LOT louder in our house.

For Halloween he really wanted to be something gross and bloody. Top pick was a zombie soccer player. Don't see to many of those running around. If I buy the costume, no gore allowed. I'm the no fun mom. We managed to compromise and he's dressing up as a SWAT officer. He'll get to carry a toy rifle so that made up for the lack of icky scary stuff.

So hopefully out soon. I ended up down here for a second opinion regarding the port/pain situation. Like I mentioned earlier, home health was using a needle that was way to short and the TPN was leaking around the port-similiar to a blown IV. The hope is that the pain is just tissue and muscle damage, kind of like a chemical burn, and will heal with time. Picc line for TPN until we can switch back to the port. Have a couple of cardio stuff going on as well, but Drs think I can wait and see my dr back home. I will be having a right heart cath in the near future. As dumb as it sounds, the only reason I'm still hanging out is due to a persistent UTI. Drs want to see a drop in my WBC-so drop little dudes!

I'll be home in time for everything. By now I know my system pretty well and things are settling down. My poor body has faltered here and there, but it hasn't yet let me down:)
Posted 10/23/2014 9:53 PM (GMT 0)
did they check for blood draw back before running the meds and tpn? my port nothing will flow unless needle isnt in at all, so im guessig thats what happened...I have a chemical burn fro and iv infultration so im feeing your pain.
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