important!! anyone else have EXTREMELY sensitive skin on their arms? poss due to IVs

[Vampy]

I have had my fair share and everyone elses fair share of IVs in my town. My arms no longer can support a IV, you cannot see any veins in my arms, and i only have one vein in my hand that can be used to drawl blood. my veins cannot hold ivs, they either roll, disappear, blow. Its a very rare thing to get an iv in that will stay in. But they never last more then 12 hours. Due to all the IVs my arms are completely overly sensitive!! Everytime i get a small needle in my arm, it literally feels like my arms are being cut open and i almost scream and i cry. I'm 27 years old, and i've been dealing with ivs for years. My husband loves to rub my arms when we sit together but after a minute or two i want to yell because they are hurting. Whats going on!!!?!?!?!?!?!?

 

[Liza]

Hi, I'm sorry to say, sounds like your veins are shot. I'm surprised your docs haven't suggested a picc line or a port a cath. The antibiotics they run through your line to treat a CF exacerbation are so very harsh that most CF'ers eventually have to move on from a peripheral line to a picc line and in many cases eventually to a port a cath. Your veins are probably so scared up that simply drawing blood is a major ordeal for you. When my oldest daughter got her port, it was nearly impossible to do a simple blood draw from all the scaring on her veins. After a couple of years it got better, how I don't know because scaring is scaring, but it did and you could do a blood draw fairly easily. You should ask your docs about a picc line, which would probably have to be put in by the interventional radiology department. You may or may not be sedated or put into "twilight" for the procedure. My youngest daughter (18 at the time) used to get a double lumen, they put it in her upper inside arm, about 2-3 inches above the inside elbow. If you're in more than once a year, you might want to ask them about a port a cath. My oldest was totally against it until she had no other choice. They couldn't get a picc line in and she really needed to get on some IV antibiotics, her only choice left was a port. She was 15 at the time and once she'd accepted it, she decided it was the best thing ever and admitted she should have done it sooner. Good luck with talking to your docs and hopefully soon, your husband can go back to rubbing your arms and you can be back to enjoying it instead of hurting.

 

[bloggymom]

My veins are not visible either. You can see a few on the inside of my arms (where they put PICC lines). Blood draws are murder. Multiple pokes... veins roll, pop and blow out. My arm are so sensitive that I have to wear super soft shirts.

I was a port but doc won't do one yet.

 

[Iamqueenofeverything]

I did picc lines till I can handle them no more. Now I have a port and I love it! No more poking of the viens and no more pain. There are some restrictions to having a port but its worth it! All the nurses have to do is stick the needle in!

 

[LittleLab4CF]

I hope you find a resolution to your skin pain. Although I share your shot veins ( i'm waiting to be hooked in as I write) but my skin is OK and always has been. Veins, arteries and nerves drive blood and nerve impulse traffic through the body structurally similar to our national transportation system. Multi lane highways move everything throughout the body like trucks or pipelines, branching off at interchanges to service various communities. The veins and arteries are also tying into the nerves and keeping the nerve cells nourished.

Almost any IV medicine will damage veins to some degree. IV meds are a diluted drug solution. The concentration of that solution unless specifically altered are right at the most efficient concentration. Efficient for the manufacturer, transportation and for us that ONE IV won't cause irreparable damage to the veins. I ask to have my IV infusions to be diluted futher by pushing 0.5 liter of isotonic saline for each packet of IV drugs.

Many years back I was having my wisdom teeth removed. When the sedation wasn't hitting me they suddenly realized they had not removed the tourniquet on my arm. Vein bulging with the sedative went flat as they snapped the elastic strap from my upper arm and bye bye. Over the next week a long black and then green streak formed over the path of my former vein. By week's end the hardened vein was surfacing like sections of a broken sewer line. That hurt for about 6 years. A better analog is chemo therapy. Although it keeps improving, chemo causes neuropathy and IV antibiotic infusion is chemo therapy too, just less hamful to the body in the short term.

"The solution to pollution is dilution" quoted by former Wyoming senator, Clifford Hanson may not work for plutonium but the premise is sound. You might press for the best dilution for delivery. I think your pain is more neuropathy than veinous fitting. Maybe Neutron or similar medicines like Lyrica aimed at fibromyalgia can help.

LL

 

[Vampy]

I talked to my cf dr and he said that this isn't a cf problem, more then likely i have fibromyalgia.

 

[Hardak]

I know of a surprisingly high number of CFers that are getting told "Its Fibromyalgia" as of late, I know of a few GP's that think its the current go to for undiagnosed chronic pain. I would suggest talking to your GP about it, perhaps a neurologist and a dermatologist as well. I wouldn't rule out low O2 levels in your arms as well sense you've got so many blown vanes. I wouldn't rule out the mental components as well. Its a wonder any of you had a standard IV for more then 12 hours with out getting at least a MID or PIC put in.

 

[Vampy]

Well thats weird you mentioned that Hardak, i almost started crying tonight and i still want to cry, i was at Menards looking for things to redo my kitchenw ith my husband and i ran into my aunt who just 3 days earlier had done my hair at the salon, i got completely lost and i couldnt even remember who she was, i had been having memory problems for years and asked my prevous clinic ((who i changed from from the lack of care)) about poss memory loss due to cf and they told me never, no that its no way related.

 

[CyrilCrodius]

This may or may not help : ensure that you are sufficiently hydrated. I have found that my veins go from cooperative to totally disappearing and/or blowing up when I'm dehydrated. Ask them to set the infusion rate at 70ml/h, even though they will probably tell you that it should be going faster.

If I were you, I'd go for a PICC.

As a kid, an IV would last at most 3 days. 5 days was rare, 7 days was awesome, more than that was a miracle. My poke record is 21 in one day and probably more than 40 in a 14 days stay.
Now I have this one vein that started being able to sustain a 14 days run of IVs since I was 14 years old. I am very thankful for it.

LittleLab4CF : I find odd that your nurses/doctors accept to dilute your antibiotics. Usually, they have to be infused at a precise rate for best efficacy, so they would have to compensate with a higher rate to have the same efficacy with a more diluted solution, which really isn't doing a service to your veins either. It's probably worse if they do infuse it at a higher rate. In the end, it's the same thing as asking the infusion rate to be slower, which is exactly what I do. If anyone sets my IVs at faster than 80ml/h, they are told. :V It used to be 70ml/h when I was a kid and I had a piece of paper saying "70ml/h" over the pump screen so no one would forget while I was sleeping. I'd totally freak out if I woke up and saw that it was set faster (80-120ml/h). I would be so anxious and scared that my vein would blow up that I wouldn't be able to sleep until the dose was over. *sigh*