My GP has now recommended I get a PICC line because I've been having problems with IV insertions. This is apparently because the veins in my arms are not cooperating. I had no less than 7 pokes before we were successful in getting an IV started at my last treatment two weeks ago! My arms were a mess.
A little history to help explain why. I had to have 12 sessions of chemo for Hodgkin's directly into my arms because of a DVT from a port I had installed between sessions 1 and 2. So I had the port installed one week, chemo the following week and a DVT and then the port removed shortly after that. Needless to say it was a rough couple of weeks not to mention continuing with the chemo.
All that was 5 years ago and since then I've developed this CIDP thing that is really putting me thru some changes both physically and mentally as most all of you here are probably experiencing as well. So I my Neruo doctors have started me into a treatment of IVIg and I'm having a problem with starting IV's.
Now my concern is in having this catheter inserted in a vein and all that. Should I be concerned or am I over thinking it? I'm just a bit nervous about having a tube inserted into a vein that runs in close to my heart. I'm alos nervous about the process and the person doing the work on me because I can't control or pick the nurse with the most experience. I hope I don't sound too controlling though I know I do.
I was told at the time that the DVT I was experiencing was NOT a "clot" but a "thickening" of a blood vessel. It was more of a lets say an inflamed vessel? During the ultrasound they said it was evidenced up into my carotid artery or into my neck. Now to me that all sounds pretty darn serious and I would sure hate to have to go thru it again.
Thus my concern on a PICC line. I can't continue with the arm IV's, those are just really making my arms a mess. I know something else has to be done so any advice, words or wisdom or helpful experience is welcome.
Sorry to write so much about s single question. Thanks.
I had one put in to make it possible for plasma exchange. My muscles had atrophied and wasted away so badly that they could not support the veins in my arms and they would simply collapse around the needle.
I had the port that can only be left in for several weeks at a time, not the more permanent one. It worked well, although the insertion site was a little uncomfortable and extreme care had to be taken to keep it clean and dry. It is a little creepy having a big fat tube stuck down your jugular almost to the heart, but the benefits far outweigh the downside.
I've worked with and known many cancer patients and most of them said they were comfortable with the PICC line. They felt it was better than being stuck over and over again. I can certainly understand your anxiety about the person putting it in. Having a condition that puts so much of our control into the hands of others, often strangers can turn anyone into a "control freak". I hope it all goes well, let us know how your doing. - Peace be with You - Maggie
I've worked with and known many cancer patients and most of them said they were comfortable with the PICC line. They felt it was better than being stuck over and over again. I can certainly understand your anxiety about the person putting it in. Having a condition that puts so much of our control into the hands of others, often strangers can turn anyone into a "control freak". I hope it all goes well, let us know how your doing. - Peace be with You - Maggie
Have a great deal of experience with PORTS, PICCs and Jugular lines. Over the last 13 years, I have had an inpatient hospital stay of 7 days EACH month to get IVIG. My CIDP is so aggressive we must use the mega dose of IVIG everybody usually get the first time-if you got this dose you would know because the first time you do this dose every person must be hospitalized for safety concerns, If your body does ok, most people go to a lower dose at an outpatient clinic. I have to stay at that mega dose level, but my body responds horrible so I have to stay in the hospital to get supportive care.
I shared some of my details so you would understand why I have so much experience with PORTS, PICCS.I have had 9 separate permanent under the skin ports. I just had my 9th port put in last month. Because I do so much IVIG, it tends to wear out a port about every 18 months. My 3rd port and my 7th port literally almost killed me. My 7th port developed a staph infection inside it and it spread through my entire blood supply and made me septic. At the same time I developed 2 very large blood clots in my jugular vein on the right side of my neck. It took 4 months of hospitalization and IV antibodics to survive. I still kept doing my IVIG treatments while I was already in ICU. I had 14 picc lines prior to my ports. During times when ports could not be replaced until all infections and DVT's were under control, I had temporary jugular lines in my neck-this happened 5 separate times.
Basically if it could go wrong with a port it has happened to me, but I still would tell you to get one. If you get a permanent under the skin port -(which means when not in use it is completely under the skin no lines hanging out of the skin) it is always done by a surgeon. I recommend using a vascular surgeon, instead of a general surgeon, who will put the port in under fluoroscope in the OR. The fluoroscope lets him look at multiple veins to find the best spot. Doing it this way, insures you get the best results, the least chance of developing DVT's/clots of any kind, and a comfortable procedure. Sorry for the long answer but I hope my details will help.
Jakeyspaw, It sounds serious because it is serious. I would be concerned too.
1- DVT means deep vein thrombosis which is a clot. It either IS DVT or it's not. Thickening is not DVT. Sounds like the docs ( I am one) are being evasive or misleading.
2- You do have a choice and control in your treatment but you have to exert that control by telling them who you want or don't want to perform your infusions! Your treatment is a minimum of a 50/50 proposition. It's your body. They make their livings from you so exert your choices. They won't like it but it's not them getting any pain/complications.
3- Sounds like your "CIDP" may very well be post-chemo polyneuropath though I'm assuming your neuros have already thought of, and ruled that out.
4- You may want to ask for subQ IVIg infusion or infusion under the skin rather than IV which has, and very well will, cause trouble with your veins. You don;t need more problems. Look it up here and the internet.
5- When in doubt, back off and go with your gut. It is incredibly reliable. Get a second opinion from someone you pick. Get involved actively in your treatment.
I did SubQ Ivig for a year and it worked very well. I wanted to try SubQ because I wanted more control over my IVIG schedule. I thought I would like it better because I was in control of when I gave my infusions (I even did it once at work and no one even really knew because I had the little pouch under my shirt). But after a few months I found that it was more invasive of my time because I was giving myself a SubQ infusion twice a week where when I get IV it is only once every 4 weeks. So I felt that I was always sticking myself and turning my kitchen into a hospital. But I am lucky because I have good veins so the choice to do SubQ was because I wanted to see if it worked better for my schedule. It did not. But if it came down to a PICC Line or going back to SubQ I would go with SubQ. It had its benefits (such as giving the infusions at work). The infusions were shorter but more often. No nurse, just me. I would look into having the SubQ infusions. One other benefit of SubQ is that you keep your IVIG levels in your system constant, they don't rise when you get the infusion and then dip way low as the weeks between infusions go by. This would be better for someone who is having symptoms to keep your symptoms at bay better. Good luck. Gammunex is the infusion drug I used for SubQ. But it is a weaker form of immunoglobin (10%) because it is usually used for IV. There is a 20% solution that is approved for SubQ allowing you to use less of the drug making it possible and easier to go the SubQ route. Good luck.
Maybe try everything else first. The first few months I had a really hard time with ivs. I think my veins weren't dilating because of the cidp. As the ivig and steroids began to help the cidp my veins improved too. There was a few things we did those first few months that made a big difference.
Drinking electrolytes, water wasn't enough. I drank Green Goddess but Gatorade is good too.
I would try to move around, exercise to get the blood flowing the best that I could just before the iv.
Hot towels or heating pads to warm the vein.
Magnesium lotion and citrate- ask your doctor to make sure it doesn't interfere with any other meds.
The iv was placed under my forearm. Awkward I know, but it worked. It's called the basilica vein.
Insist on a good nurse who knows what they're doing because your a hard stick right now, hopefully temporary until the ig kicks in.
And don't forget to breathe which keeps the vessels open. It's easy to anticipate the pain of botched iv attempts but try to focus on something else. Kind of like Lamaze in labor.
I am surprised that subq wasn’t 't offered to you by your GP or your neuro, but I learned 5x as much in these groups and the medical internet, as I did from my docs and I am a doc so you would think I would know what to ask- not so. When you’re a patient you think they know everything about everything — and will tell you. Not so again. Start reading, searching, blogging, etc. So we can all get better informed from each other’s research and experiences! Geeps
I have had a port in my left chest area for close to 2 years. I have not had any inconvenience from it. I take an IVIG of Gammagard weekly. It is flushed weekly. I would recommend this to you if your veins are collapsing.
Thanks all for your replies. I've read all the above and some of your experiences just scare the crap out of me. I know I'm supposed to be proactive in my care BUT geez....... Can't I rely on my "health care professionals" to care for my health professionally, with wisdom and compassion?
I guess I really can't expect too much considering......I live in a rural part of the Northern California along the coast and so far my experience has not given me a warm and fuzzy. I am scheduled to go in for my PICC line in about three hours. I'll take the advice provided above and will ask questions, go with my gut, drink tons of water, exercise and request the most experienced "whoever" to put this thing in and use a scope or light. Also, I am trying to remember to breath (with varying success) as I write this.
I've got three more sessions to get thru before my next neuro eval and then perhaps another port in my chest even though the last attempt failed as I remember it.
I really do not like the idea of this thing and if at any time I get in a place internally or externally where I do not want it in anymore I will get it taken out you can bet on that but that being said my arms just will not cooperate I'm sure.
Thank you Maggie, Geeps, Susan, Chirpybirdy, mabes and all I did not mention here. Please continue to add if you so desire.
Jakeyspaw, It sounds serious because it is serious. I would be concerned too.
1- DVT means deep vein thrombosis which is a clot. It either IS DVT or it's not. Thickening is not DVT. Sounds like the docs ( I am one) are being evasive or misleading.
2- You do have a choice and control in your treatment but you have to exert that control by telling them who you want or don't want to perform your infusions! Your treatment is a minimum of a 50/50 proposition. It's your body. They make their livings from you so exert your choices. They won't like it but it's not them getting any pain/complications.
3- Sounds like your "CIDP" may very well be post-chemo polyneuropath though I'm assuming your neuros have already thought of, and ruled that out.
4- You may want to ask for subQ IVIg infusion or infusion under the skin rather than IV which has, and very well will, cause trouble with your veins. You don;t need more problems. Look it up here and the internet.
5- When in doubt, back off and go with your gut. It is incredibly reliable. Get a second opinion from someone you pick. Get involved actively in your treatment.
Good Luck, Geeps
I take your point. I should be able to find that in my records box from the time to see what was actually diagnosed instead of going on my memory. I do though have a reminder of the port thing and that's the scar on my chest that I really do not appreciate. The whole site or scar has not fared well over time. Thank you again for your reply.
Sometimes we sound pushy and like know-it-alls but we are really trying to give you the information you may need to make an informed decision. The more info you have, the more likely you are to participate in your care and challenge the docs occasionally when necessary. The decision ultimately is yours and yours alone. We’re here for you. Geeps
jakeyspaw said:
Geeps said:
Jakeyspaw, It sounds serious because it is serious. I would be concerned too.
1- DVT means deep vein thrombosis which is a clot. It either IS DVT or it’s not. Thickening is not DVT. Sounds like the docs ( I am one) are being evasive or misleading.
2- You do have a choice and control in your treatment but you have to exert that control by telling them who you want or don’t want to perform your infusions! Your treatment is a minimum of a 50/50 proposition. It’s your body. They make their livings from you so exert your choices. They won’t like it but it’s not them getting any pain/complications.
3- Sounds like your “CIDP” may very well be post-chemo polyneuropath though I’m assuming your neuros have already thought of, and ruled that out.
4- You may want to ask for subQ IVIg infusion or infusion under the skin rather than IV which has, and very well will, cause trouble with your veins. You don;t need more problems. Look it up here and the internet.
5- When in doubt, back off and go with your gut. It is incredibly reliable. Get a second opinion from someone you pick. Get involved actively in your treatment.
Good Luck, Geeps
I take your point. I should be able to find that in my records box from the time to see what was actually diagnosed instead of going on my memory. I do though have a reminder of the port thing and that’s the scar on my chest that I really do not appreciate. The whole site or scar has not fared well over time. Thank you again for your reply.
Well, I got the PICC in yesterday afternoon and it seemed to go ok. Apparently they used a Nurse that is their "teaching" nurse for this sort of thing and I will give her good marks. Her bedside manner and technique seemed to be very good. I went in today to have the dressing changed and I'm to return Monday for my 4th four day session of IVIg Privigen at 195 gms total.
The PICC is in my right upper arm kind of at the inside of my elbow. I am right handed so it's a little inconvenient and there is a bit of discomfort at the site but other than that I seem to have lived thru it so far. This is also the side I keep waking up on so I found myself lying on my arm several time thru the night. I'll have to teach myself to sleep on my left side if I can because my arm is still kind of sore at the site.
I wish it could have been place a little higher but I do hope it will be less drama than the problems I've been having with those IV starts. Since I have an infusion over 4 days they will only leave the IV in for 2 days so I had to go thru that process twice at each infusion. So ok, this should be better that all that.....Coolness.
Thanks I do appreciate you all listening to me and providing your experience and advice. Now I want to ask a question on what others take for day to day meds if I will not be intruding too much. What helps and what doesn't so I can compare to what I take that is helping less and less.