posted
Just wondering if this is unusual to have this for IV. I'm freaking out as I am small and its very heavy (2 foot long tubes) and the manual has all these possible complications listed.
I got surgery Monday and am still in alot of pain. I'm really mad this dr ordered this for me and all week has not responded to my concerns.
I have had no real feedback on it. Does anyone know their llmd prefers this IV? Didn't Mandy Hughes have a hickam catheter in Under OUr Skin?
I'm also on IV Claforan (day 5) and am experiencing dull aches in my chest along with some heart palpitation. Feel more tired and brain fog.
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hi Mandy,
I actually had a triple lumen Hickman for 15 months. And no, it was NOT necessary. Obviously, someone did not know what they were doing when it was ordered for me.
But I dealt the best I could. Remember to flush BOTH lines regularly. I would rotate the lines being used daily, so I would flush then as used.
Yes, they are very large and heavy, and my surgery hurt for a very long time afterward. I eventually learned to use my bra to carry the weight of the lumens. If not, the weight would pull uncomfortably at the insertion sight.
You may want to slow your infusion time down to see if that helps with the reaction. Hopefully you are only at that maximum blood level mark and are starting really feel some effects of the med.
However, as with any chest pain, be certain to speak with your LLMD as soon as possible. Especially if it increases.
Oh, and a really positive thing about a Hickman is that you can now do all your blood draws through it. Posts: 7052 | From Colorado | Registered: Mar 2003
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Thanks so much for your feedback. Really appreciate it. Wow, a triple lumen, bizarre!! My nurse said it was totally unneccesary (to have two) and that it's just a double flush daily like you say.
So it is normal to experience pain for a while...I wasn't expecting such a long recovery.
Luckily no increase in pain, other than the surgery pain.
Did you recall getting pain when breathing deeply? That is part of my chest pain and occasional dull aches. The palps are usually when I'm doing the infusion. It's one of those balls that I hook up to the catheter...so I can't control the infusion time.
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hello again Mandy,
Actually, I did not flush all lines daily, but rotated the lines that I used to infuse daily, so for example, my tips were colored red, white and blue... yes how very patriotic of me...
So, on day 1... I would infuse through the red line and flush that as usual. Day 2, the white line... and day 3 the blue. This was a tad difficult to keep track of, so I would write it down in my symptom diary each day along with all the other info I kept there.
This kept all three lines in good working order. One time, I did have a blockage in one of the lines, so I used a tad more heparin in that line until it was clear again... and then continued on as usual.
Double and triple lumens are actually meant for patients who are using more than one IV at a time. For example, they might be in the hospital and need 24 hr. IV through one line and sporadic meds through a second, and/or pain meds through the third. It is a tricky business, indeed.
At first I thought since I was infusing two separate antibiotics that perhaps I could do both at the same time through two lines... nope... they needed to be done one at a time.
I do remember heart palps when I first started Cleocin. But that stopped when I slowed down the drip rate. Yes, with a ball, it is not possible to do that, but you may ask your LLMD about this.
I experienced chest pain from the beginning of my crash before I began IV therapy, and it lingered for a few years, so I can't say it was actually caused by the meds. It was simply one of my first and most extreme symptoms that actually caused me to diagnose myself.
Before that, I thought my issues were simply all mental (I was very good at ignoring the physical over the years), but when the chest stuff kicked in, I knew there was something more physical going on too.
Actually everything was painful at that time including breathing deeply. And the site took what seemed like forever to heal. But then all things did for me back then.
I do hope you can get to the bottom of this. I don't want you to write it off to 'just another Lyme thing', because as with ANY chest pain or discomfort is it ALWAYS best to speak with your doc. Let's hope it is a temp symptom, but best to be safe, OK?
Posts: 7052 | From Colorado | Registered: Mar 2003
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I feel like you just explained my history with lyme...
Chest pain was my first alarming symptom as well, and went to the ER way back before lyme for it, before I got the mono a few months later and was down completely...but before that anxiety, digestion, and insomnia were a problem. I attributed all to stress.
Surgery pain is still brutal. Especially in the morning. Seems like it's getting worse but maybe just no improvement. The line is visible under my skin. Was it for you? I have a thin chest.
Thanks so much for your kind reply. Yes, the chest pain seems to come and go. The palps have subsided but the dull ache is intermittent.
Can't tell if my right arm hurts from surgery either. Luckily, will be seeing Dr J in two weeks so hopefully he'll get me fixed up. That is ,if I live that long,lol.
My primary who wrote the order, said chest stuff is from the IV and get blood work. Totally unavailable inbetween appts and I suspect not too versed in lyme disease. Has a very compassionated heart and is trying to help, I like that about him. I'm trying to not get upset about the non response. He's taken on hundreds of lyme patients, takes insurance (everything has been FREE so far), treats aggressively with IV...just left to my own devices.
I might take it upon myself to pulse this drug 4 days a week, 3 days off as the Lyme Disease Soultion says this is generally how it's taken. I flush both lines because its a 2 x day dose at 4 grams total. I should then just flush one line, not both if I don't use it at all one day???
Thanks so much Melanie...did all this IV stuff work for you? I hope so!!!
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Correct, if you are not using that line that day there is no need to flush it, however, DO use it the next day and flush THAT line. Is that a bit more clear?
Yes, mine was very visible under the skin and over the clavicle. The good doc J in NC (who was NOT the LLMD who order my 'octopus') said that 'garden hose' must hurt!
Your pain in the morning of the surgery sight may be from moving around during the night. I had to learn to sleep on my back. I wasn't sleeping much those days so it wasn't such a big deal, but before that, I had always slept on my side or tum.
Yes, my chest pain sent me to the ER as well. Weird 12 lead EKG, so an Echo was ordered. I was also experiencing major encephalopathy. The docs there thought I had meningitis as three fellow students had died that week from it.
So, I consented to a spinal tap. It turned out to be a traumatic tap, so I was back in the ER the next day via ambulance during the biggest snowstorm in 100 years in CO.
It took two blood patches to relieve that pain. Of course, I had not thought of how I was to get back home.
Such an exhausting first week of diagnosis. I began Doxy 200mg from the ER that first day and it knocked me to my knees. I could go on, but the jest is that things DID get better!
Hang in there! Posts: 7052 | From Colorado | Registered: Mar 2003
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Thank goodness you fought through it. This disease isn't for the weak.
Yes, clear...but if I want to take 3 days off...have read this drug should be taken 4 days on 3 off because it could cause WBC count to drop taken 7 day a week...what do I do in those 3 days with the two tubes? Take my pick and flush one and rotate once a day. Right now I'm using both lines, I named them sunrise and sunset :-) and just flush each one daily.
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Haha, nice names! No, you are NOT being annoying, these are really important questions!
I should say here that my opinion is simply that, MY opinion. So, please make sure that your home health care is on board before taking any advice from me or others.
Alright, since you infuse twice daily, you might as well use both lines, one in the am and one in the pm. That way you have them both covered and are not using any extra flushes that you wouldn't be already using. (I am assuming this is why sunset and sunrise?)
Yes, you are understanding me...
When you take the time off, just rotate back and forth with the flushing...one a day.
In other words, each line gets flushed at LEAST every other day while on meds or not.
The reason I was conserving was because I was paying out of pocket, and was told that flushing each line every day was not absolutely necessary.
So, do what you feel comfortable with along with what your LLMD suggests. Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Thanks again Melanie really appreciate it! Yes, sunrise and sunset for two infusions a day.
I'll try just flushing one line each day. Need a break already!
Posts: 348 | From maryland | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If I am planinning on going on IV but don't want a PICC, what port would you guys recommend?
Is there a type of Hickman without two lines? Would that be less cumbersome? Or is there some other type of port that is better? Thanks!
We will probably pulse my IV meds, taking weeks off, so that is why my doc was thinking a port would be better.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey there Hoosiers,
Here is a general explanation of Lines that I put together.
If you know you will be taking weeks off at a time, then a port would most likely be a good idea for you, because you can deaccess it and let it skin over. Therefore no flushing and you can swim or whatever.
Also, yes, most central lines that are tunneled through the chest are single lines. MUCH easier and less cumbersome to deal with. Some are self closing like I explained above (Groshong), so no draws through them, the Hickman does not self close, so it can be used for draws.
Each has pros and cons, so check them out and talk it over with your doc. M
Posts: 7052 | From Colorado | Registered: Mar 2003
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