What is so bad about plasmapherisis?
AnonymousMay 2, 2007 at 1:56 pm
I don’t know if I spelled it correctly but since nothing is helping Dell, I want to know a little about how plasmapherisis makes you feel.
He’s 3 now, had a birthday in the hospital but we got out that day. He’s tried ivig since 11/05, we’re up to once a week. He did oral steroid from 11/05-12/06, then we switched to Solumedrol each week.
Dell’s on a continual roller-coaster with his strength. We told the dr. we agree to try methotrexate but he would not start him last week because he wonders if he has a “hidden” infection. He has the frequent fevers.
We did all sorts of antibody and allergy testing last week but don’t know the results yet. We are going to an ENT next week to be checked just to cover all bases.
Thanks for any input.
AnonymousMay 2, 2007 at 4:19 pm
I had about 20 sessions of plasma exhange last year. I am 44 with excellent veins, so they were able to access my veins with a needle stick in each arm. The catheters used for pheresis are quite large, however, and may be problematic for a 3 year old’s veins. If the patient cannot be accessed via peripheral veins, the doctor will need to place venous catheters that pig-tail externally, which I understand are often in the neck area. The process itself caused my blood pressure to drop to about 90/40 until about 15 minutes afterward, rising to normal after I sat up, etc. The process also really wiped me out from an energy standpoint for the rest of the day.
It was somewhat beneficial as it helped me to slow down a major exacerbation. I think it might be a little rigorous for a 3 year old, just my opinion, based upon personal experience.
Best of luck to you.
AnonymousMay 2, 2007 at 5:16 pm
My experience with plasmaphoresis was 11 days in a row and then 3 days a month later. First a Dr puts in a temporary dialysis catheter. This was on my chest. It has 2 ports in it. One to remove the blood and one to return the filtered blood and albumin back to the body. I used to call the treatment my oil exchange. The procedure itself took about 2 hours to 2.5 to complete and they did 3 liters at a time. Problems I ran into were:
– The temporary catheter would get positional or something and then the technician would have to fiddle with it to get it to work properly. The machine would beep and stop.
-You have to have a plasmaphoresis machine and specially trained nurse to run the machine so it has to be a fairly large hospital in order to have one.
-Once you are hooked up you are tied to the machine for the entire treatment. Its big machine so you can’t roll it to the bathroom.
-Every time you get a treatment it strips some red blood cells off so my hemoglobin dropped and I had to get iron IV and a unit of blood as my body didn’t have time to regenerate between treatments.
-It also strips off calcium so they gave me Tums to chew each treatment.
-I would get very cold because they were infusing room temperature albumin back for the plasma removed. I would have 5-6 blankets on top of me by the end.
-They monitor your heart, oxygen level as well as blood pressure, and temp. My blood pressure dropped to 50 over nothing when they used a lower concentration of albumin.
-The catheter has to be kept very clean. It could not be used for blood draws or other infusions. The dressing had to be changed wearing a mask.
I know this was long but I tried to share it all! If you have any questions feel free to contact me.
AnonymousMay 2, 2007 at 5:35 pm
Thanks for your replys. I don’t want to do plasmaphresis but I don’t want to do ivig either. I actually don’t want my baby having this disease but I have no choice.
It is so hard absorbing all the information about the different treatments and drugs. We know that things are not going well now and something has to change. I think the future probably holds some kind of cancer drug but I am trying to delay as much as possible.
Thanks for your posts, it is appreciated.
May 2, 2007 at 5:39 pm
Lori, I am so sorry that your baby has to go through this, I am so sorry you and your family has to go through this. Some how keep finding the strength to keep on being an awesome mom! Love, Dawn
AnonymousMay 2, 2007 at 10:29 pm
I had 5 sessions, all while I was in the MICU. 4 of the 5 were no big deal. The middle session was hell. I got cold and could not get warm; I really felt like I was freezing! I had piles of warmed blankets on me, but didn’t warm back up til an hour or so after the session was completed.
I was on a vent and had catheters in both sides of my neck.
AnonymousMay 2, 2007 at 11:37 pm
I had 4 plasmapherisis treatments while in the hospital, and they went very easy… It was a little chilly, is all. They did 2 for 2 days, then a day break, then 2 more for 2 days. I was 39, though, which is a totally different thing than a 3 year old’s body!
The worst for me was that I was somewhat dehydrated, so they couldn’t get the catheter into the side of my neck or my chest, and had to use my groin. That meant that I couldn’t sit up all through those days for fear of crimping the catheter (I had fairly minimal paralysis). If I was ever going to do this again and had some planning time, I make sure to keep my fluid intake up for a couple of days before-hand.
I have a friend who has done regular plasmapherisis for Myasthenia Gravis – he calls them the “vampire events”…
AnonymousMay 3, 2007 at 12:15 am
I don’t know alot about it on 3 year olds or much about it at all because I was in a drug induced coma when they were doing all this to me. My wife said my “plasma fluid” whatever it is at first started coming out looking like pond scum. After about the 8th or 9th time it started to look like urine. She was my liason as I was paralized and in a “back in the 70’s trip” I only remember 2 and it stunk and I was kinda groggy then also. I had the catheter in my neck and it wasn’t a problem for me but then again I’m 48. I know they took me to radiology to remove it and the radiologist showed it to me and it goes almost to the heart. There was no pain coming out either because it hadn’t scared in with tissue in my body. There is one thing that I can not imagine in my mind as hard as I try , is a child going through what I did. I think about it everyday and I cannot Imagine it! May every prayer even those that don’t know your child send at least a little chip to God for this to go away from your child.
AnonymousMay 3, 2007 at 8:26 am
I have not had the plasma exchange but just had to say my prayers are with you and your little one. As a mother of a four year old, it literally brings me to tears when I see or hear of other sick children. Big hugs to that little one, and mommy, too.
God speed to make it just go away.
AnonymousMay 3, 2007 at 10:00 am
I had 5 plasmapheresis treatments, spread over 1 week. I did fine during the treatment, but my b/p would drop very low toward the end, and afterwards I was very drained. Low calcium would cause my lips to tingle during the treatment, so I was told to bulk up on dairy. To stop the b/p drop, they didnt “rinse back” all my red blood cells at the end. I had a cath in my neck. I dont know how a young child would be, I was told the older and more out of shape you are, the higher the risk for complications?? Dont know how true that is. I responded to the pp very well-I think it kept me off the vent. Good luck to you and your little one. I will pray for you.
AnonymousMay 4, 2007 at 12:16 am
I had plasmapheresis for my GBS when I didnt respond to the IVIG treatments. The process of plasmapheresis itself is not painful but it does make a person very tired. I used to have to sleep for about 2 hrs straight after I got back to my room just from the procedure alone. You need to stay awake during the procedure too because of the way calcium is removed from and needs to build back up in a persons body so they need you to be aware of certain things like muscle twitches in various parts of your body to ensure it doesn affect larger muscles such as the heart. I remember I had to get a few injections while I was getting the procedure done and it always felt like I had wet myself so if he does end up getting this done tell him not to be alarmed if he feels that way.
They do use a large needle and try to feed into one arm and pull out of the other arm, one being a flexable tubing and one is a metal piece that if you move your arm with that in can puncture your vein. They tried that method for me first but one of the issues with GBS is that your veins collapse and hide away making it impossible for them to do this for me. Just when they thought they had it good then I would blow a vein right away, I was having the same problems with IVIG too but not to the extent because the flow for that is much slower than plasmapheresis as that needs to keep moving at a minimum rate (I cant remember the rate). The ended up putting a central line in me which I remember was very painful. They keep you awake for the procedure but drug you up really good, I remember being aware of them pulling on my chest during the procedure… really weird feeling but because of the drugs it didnt hurt. Once those drugs wore off though it was very painful for a few days afterwards.
Overall, I am thankful for the procedure because due to that procedure they were at least able to get the progression of the GBS to stop. Sure there are certain risks with that but there are risks with many of the procedures including IVIG. I got certain antibodies from IVIG that made them do a lip biopsy on me and I also picked up the CMV virus from the IVIG as well so any procedure does not go without its risks but they do take precautions for all procedures to try and minimize those risks.
AnonymousMay 5, 2007 at 12:32 am
[COLOR=black]I don’t know about doing plasmapheresis on a 3-year-old, mostly because the veins are still small at that age. I would check to ensure that the machine your doctor is planning to use could be set up appropriately for a small person. If it can be, I think I would give it a try.[/COLOR]
[COLOR=black]Because I have small, deep, and collapsing veins, I must have a catheter. The catheter is a nuisance for me, but only that. But then again, I am not likely to try to pull it out and I am fastidious about keeping it clean and dry. Should Dell need a catheter, can you trust him to do exactly what he is told? If you can, then I would try PP. If not, I would not do it; it might be too dangerous.[/COLOR]
[COLOR=black]Let’s assume that Dell doesn’t need a catheter. He will have venipuncture with two reasonably large needles. It will probably hurt, so you need to consider how well he copes with needles. [/COLOR]
[COLOR=black]As for the actual procedure, once there is venous access, he will be hooked up to a machine. Blood goes to the machine, where it is put through a centrifuge. The centrifuge separates the blood into two portions, one with red and white blood cells and the other with plasma. The plasma gets diverted to a waste bag. A plasma substitute, 5% human albumin, is added to the red and white cells portion and sent back to the body. This process continues until the entire volume of plasma has been circulated through the machine (meaning that half of it is replaced). [/COLOR]
[COLOR=black]Don’t worry, it sounds more horrible than it is. For an adult, there is only about 100 ml of blood outside the body at any one time. That means that even if the machine were to fail, you would not lose much blood. If the PP is set up for a child, then I would expect the volume of blood outside the body would be even less. [/COLOR]
[COLOR=black]As for side effects, I have experienced blood pressure drops, not to the point of blacking out, but almost. Being well-hydrated helps avoid the blood pressure drops.[/COLOR]
[COLOR=black]My hospital asks that I get blood tests before each treatment, looking at blood electrolytes, especially calcium, and CBC. These are done to ensure that there is no infection and to make sure that the electrolytes are in balance and stay in balance after the treatment.[/COLOR]
[COLOR=black]For me, the choice to do plasmapheresis was a big deal at the time, but now, I cannot imagine not doing it. It is unfortunately tougher for you, because you must decide for your son. PM me if you want more details or someone to talk to about this.[/COLOR]
[COLOR=black]Godspeed with your decision,[/COLOR]
AnonymousMay 15, 2007 at 11:02 pm
I agree with the Dr. I had 5 plasmapharesis procedures and it was very invasive. I just remember having to listen to music on a headset to keep my mind off the procedure. It also would be scary for a little child with that large machine they have to role in and the needles. I had my husband for every procedure with me.
You must be logged in to reply to this topic.