PermCaths are fine until they're not

[justagirl2325]

Learned something new yesterday.  I learned what "rigours" was (in Canada we use the letter u a lot).  Routine dialysis at the hospital (instead of home because he wasn't feeling great) turned into a nightmare.  When you do have a permcath infection (and not realize it) the act of dialysis spreads the infection throughout your entire body. 

An hour into the session, he had severe chest pains, fever and rigours - and that's when I walked into the room with some tea for him.  Let's just say I freaked out. 

He's still in the ER 30 hours later as they cannot confirm infection for two days and another doc thinks he might have a blood clot in his lungs - which they also can't confirm because the permcath gets in the way of a CTScan.   He has to try dialysis again tonight as he hasn't had a good session since Sunday and his creatinine was 8.9 (or 890?)  I will be watching him like a hawk.  He is very sick.  I hope the antibiodics he's received since then have helped kill the infection so tonight's dialysis can go ok. 

That permcath is coming out tomorrow.

[Michael Murphy]

Good luck, I will say a prayer tonight for both of you that he gets healthy and get through the next few days.

[Vt Big Rig]

Best of Luck to you both.

[kickingandscreaming]

I wish you both well.  Makes me nervous about my permacath that's been in since Thanksgiving.  I'm trying to get it removed--if only I can get through a week of PD without a crisis.  How would you even know if you had an infection?

[PrimeTimer]

I wish you both well.  Makes me nervous about my permacath that's been in since Thanksgiving.  I'm trying to get it removed--if only I can get through a week of PD without a crisis.  How would you even know if you had an infection?

My husband takes his temperature 2-3 times a day so he is always aware of the slightest change. We also are required to take it pre and post dialysis (we do home hemo). If it ever gets up to 100, he's to call his nurse. At 101 or higher, we call the nurse and head to the ER while she calls to alert the ER we are on our way so he doesn't have to wait when he gets there. They've immediately taken him in and no joke, start doing labwork while they check him in. He doesn't have a permacath (only in the beginning while he waited for his fistula to mature) but we check for any redness and swelling around his needle sites or any sores on his skin and feet (that's important because he's not only on dialysis but also diabetic). The 2 times that his temp rose to 100 meant he had an infection and required IV anti-biotics in the hospital. Other signs of infection are nausea and vomiting. Awful. So once his temp rose to 100, we knew he was in for a baaad time.   

[PrimeTimer]

Prayers for you both, justagirl2325. Sending you good thoughts, strength and well wishes. "Please, Lord, help this couple and heal him!"   

[Simon Dog]

. So once his temp rose to 100, we knew he was in for a baaad time.   

In my pre-dialysis days, I remember telling my wife "No, I don't need to go to the ER, just let me sleep it off" when my temp hit 105.   Good thing she insisted on dragging me in (Cipro cured me rather quickly).

[PrimeTimer]

. So once his temp rose to 100, we knew he was in for a baaad time.   

In my pre-dialysis days, I remember telling my wife "No, I don't need to go to the ER, just let me sleep it off" when my temp hit 105.   Good thing she insisted on dragging me in (Cipro cured me rather quickly).

Happened to my husband pre-dialysis too. Couldn't figure it out until he mentioned a tooth that was bothering him. Emergency visit to the dentist. ABSCESS. I will never let him get past 100 again. 

[justagirl2325]

My guy just may be the luckiest guy out there (you know, if you skip past the part where he has Type 1 diabetes, kidney failure and the like).   They always told us that the first sign of infection would be high temp.  And his temp was elevated but only just around 99 or 100.   Even when the infection spread on dialysis the other day, still not over a 100 just shaking, chest pains and high heart rate.  Everyone thought it was an infection except the ER doc.  His heart rate was over 130.  So the ER doc ordered CT scan, lung VQ scan and ultrasound.  They treated him for both infection and blood clot without knowing if he had either because antibiodics wouldn't hurt him and blood thinners could be stopped at any time.

Turns out he has both.  He has a large amount of clotting in his neck, chest and right arm (catheter on right side).  Had it not been for the infection (and especially without the expected high temp), the clot might have gone undetected until it was too late.  So although he's not too happy about having to stay in hospital for another 3 days at least, he is getting better and will be fine.  He did not have a clot in his lung which is good as they said those can be quite dangerous.

The symptoms of the blood clot mimicked heart problems.  So I'll type this as it might help someone one day.  If you have a catheter and you begin to get short of breath when you do activities that you normally do, or have chest pains please get an ultrasound to check for clots.  Now they say they are quite common with catheters, and I've never heard or read that before.

[cassandra]

O justagirl2325 such 'good' news. Thanks for letting us know, I'd never heard that of the clots.

Sending healing vibes and love over to you and hubby, Cas

[Vt Big Rig]

Sorry he has to stay in for a few days but GREAT NEWS otherwise.

[PrimeTimer]

Glad you updated us and have better news. That would be scary to go thru but hang on tight to each other! And we are all here for you guys, too! Hard to breath until they are actually back home again but you can only do so much in a day. Focus on the healing and strength will come with it. One day at a time. Tomorrow is Valentine's Day (I think). Treat yourself to a little something, even if it's in the form of a long nap.     

[justagirl2325]

Just an update, 8 days in hospital but he is out now.  He has to take antibiotics for 2 weeks and blood thinners for 3-6 months but otherwise is well.

[PrimeTimer]

Glad to hear the good news and that he's home from the hospital. 
That was a long stay, no doubt taxing on both of you. The weekend is here, hope you get to rest now. Curious (and if you don't mind my asking), does he have a new catheter to do dialysis? Or is there a fistula in his future? Hope it all goes smooth now that he is home. Life is tough enough as it is. Hospital stays suck.   

[cassandra]

Thanx for letting us know

Lots of love, strength and luck, Cas

[justagirl2325]

He has a fistula - the doc's offered to put in another catheter but he said no thanks.  So it's back to the hemo unit for them to establish buttonholes again so we can go back to home-hemo.  Everyone says it works fine and as he put it "all the professionals have no trouble putting needles in." 

[PrimeTimer]

He has a fistula - the doc's offered to put in another catheter but he said no thanks.  So it's back to the hemo unit for them to establish buttonholes again so we can go back to home-hemo.  Everyone says it works fine and as he put it "all the professionals have no trouble putting needles in."

Not even three years ago were the words "home-hemo" "buttonholes" and "fistula" a part of me and my husband's vocabulary. Now we are "professionals!"