so..I am on to plasma exchange….

I would get the lines removed to decrease the chance of infection.

Hello Lori,

I trust things will go well with the PE. I have one quick question, though, why do you need to be hospitalized? My first round of PE of was done on an outpatient basis, using a jugular catheter. I was careful not to pull on it (or let it be pulled) and kept it dry, and I had no problems. I would think that, barring other problems, you could do so as well.

If the PE works well, you might be able to tell in a week or so. In my case, it took 3 sessions before I noticed any improvement. I was very much improved by a few days after the fifth (final) session (Note: one round of PE is typically 1 to 5 sessions, spaced every other day or so).

The jugular catheter is not a permanent solution. If you elect to continue with PE, then you have a few options. One is to just have venipuncture done each round or session, depending on the hospital’s protocol. The negative is that big needles, typically 17 gauge, a size that a nurse of mine characterized as “medieval”, are needed. This is an option only if you have big veins. Another is to have an arteriovenous fistula made in your arm. Another is to have a shunt installed, serving a similar function to the fistula. The goal in both of these is to swell the vein so that the large needles can be used. Both of these have the disadvantage that they take 8 to 12 weeks to heal enough to provide useful access. The last is some sort of permanent catheter. There are several different names for them, but I think they are all effectively a “tunnel” catheter.

A tunnel catheter is called that because the catheter tunnels through the skin for a distance between the exit site and the penetration into the vein. The point is to reduce the chance of infection. Having one put in is mildly painful and full recovery can be a bit long. It can be used for PE immediately, though. It is a nuisance to put up with, but only that, a nuisance.

I could go into more detail, but let’s see how you do with PE first and then discuss options further then.

Godspeed with your treatment and Merry Christmas,
MarkEns

When do you go? I will be praying for success!!!

I have had PE several times and found it helped right away. Mayo actually recommended this treatment for me but because local facilities were not used to doing this it was difficult. I found a group of pharmacy students observing each time! My first set of central lines stayed in but after my first round I could tell right away something was wrong and reported this and was told I was not used to them. But soon I could (sorry for the graphic it) smell something was wrong. I went in and sure enough they were infected and would removed that day. They said they thought it was nothing serious would run tests on the infections which did come back for staph. So I had to have a pic line put in my arm and went in for daily antibiotics for a month. A second set of central lines were put in and that went fine but after the last round they were removed.

We decide I was just to susceptible to infection to keep them in. I moved on to get a port for home infusions which worked really well with no infections.

I wish PE was a regular option but just wasn’t willing to risk the infection. It was also hard for me to maintain the lines – I tended to react to tape and coverings to protect the lines. I was lucky that my family was willing to help take care of the lines while they were in. This was hard for me to do on my own.

Does anyone have Kaiser insurance and is receiving IVIG for CIDP? I am considering in obtaining Kaiser insurance next year. Due to the fact they are HMO and try to keep medical costs down, I wanted to know if will treat me with IVIG and not try to treat me with something cheaper like steroids, which I absolutely do not want.

[B]Plasmapheresis – My recent experience[/B]

It’s been a surreal week for me – spent it in the hospital getting all my blood cells separated from the blood plasma. First, a Dr. Lion (no, really), placed a six inch fang shaped catheter in my jugular vein. As an added favor, he slipped a 20″ needle – well, maybe 6″, into my spine and removed 15cc of spinal fluid which he said was ‘clear as vodka.” Those doctors – what fun we have! Next it was off to the plasmaphorisis machine in my room at Sharps – room 513 on the fifth floor. The machine, which I named Dracula, manned (or womaned) by the Blood Countess because of her Balkan accent, removes whole blood from the jugular vein, sends it into a centrifuge which makes the red cells so dizzy they stagger away from the plasma and throw up. The plasma, which looks rather like fermented apple juice that recently experienced a very bad night on the town, wanders off on its own, following a ragged, snakelike path through complicated plastic hoses designed by Tim Burton for the mad scientist in Corpse Bride. Once through the labyrinthine hoses, the extracted plasma sulks in a two gallon bag, and waits to be recycled into the next patient. New plasma, looking exactly like the old plasma, dribbles back into the shunt marked IN. The OUT shunt is a festive red, but the IN shunt is a more delicate muted hue – much like mixing blood with apple juice. To think, I once liked apple juice. The red blood cells, sick and thoroughly chastened, stagger back into a tube where a mechanical version of Captain Hook prods them back into the raging sea of blood that sloshes around in my body.

The centrifuge in the machine sounds rather like a jet engine warming up and I requested clearance from the tower before I was asked to not move and be quiet once again. The irritable beeping caused when the machine’s directions are not precisely followed upsets the Blood Countess who is forced to frantically twiddle this and that, adjust hoses and say strange incantations in what I believe to be Transylvanian.

So I silently reflected on the direction of spin taken by my red blood cells in relation to the rest of the universe and speculated that my plasma acted remarkably like dark matter. Relativity jumps on board as well. The red blood cells, having spun so much faster than they would have moved in my body, are now younger than they would have been and begin to party. I cannot fathom the directions they moved while in the centrifuge – The earth spins, the moon makes everything wobble, the earth circles the sun which circles the Milky way which is going hell bent for leather in some unspecified direction and it’s all moving very, very fast.

Four hours later, we came in for a landing, the last red cell staggered back into my waiting jugular and someone offered me strong medicine. I took it. Dreams happened. A woman named Meali – in charge of food delivery – (really – Meali) placed me on a delightful, salt free, heart healthy diet where everything tastes exactly like oatmeal mush. Saltless oatmeal mush. Their motto seems to be “soft food, solid stools.” Not that it helped. My intestinal tract followed Egypt’s lead, began a revolution and backed up like the Nile before Moses led his people to a place where they would be surrounded by other people who really didn’t like them very much.

The next four daze followed the same pattern – blood out, blood in, blood out, blood in – until I realized that it was a Zen koan and I finally asked the right question. The answer, of course, was 42.

Patti (my wife) appeared intermittently with a strange device intended to weave rope from ribbons encased in plastic. She kept losing count of the pattern. The pattern ruled and eventually won. She charged what needed to be charged – kindle, ipod, cell phone – and brought in contraband. Salt tucked in the back of a drawer, Citrucel in with the underwear, yogurt in the nurse fridge, cereal hidden in plain sight on the counter, clean undies and the odd back rub/ointment ritual. And, of course, she kept the nurses honest and on task.

And on the fifth day I was released, went home, blood purified, ready to spin a few tales and turn a few bowls. Katz all happy to say hi. Little One dragged my shoes down the stairs, Rosie emitted piteous howls, a sign of her urban angst, and Fetch enjoyed a good brushing.

I put on my dyslexic T-shirt with the picture of a cat lying across a book. The caption reads “Life is Doog.”

The treatment is almost immediately effective – or was, for me. I felt a difference is strewng5h returning by the third day and was in my shop turning bowls a day after I returned home. If I do it again, I want to do it as outpatient. I am currently taking 20mg daily of prednisone – which is not working all that well . . . but the Dr says to give it a few more weeks. We’ll see.

Hi Lori – 10 days seems like a long time. Unlike ivIG, plasmapheresis didn’t have any effect other than lowering my blood pressure a bit. I did it 5 times in as many days. No side effects at all. Just felt good. So maybe you could talk to your doctor and see if it could be done more quickly. A bad time of year to be hanging out in the hospital tho. Good luck and the best to you. Keep us posted. Watch out for Dr. Acula:D

Lori222,

For me, the improvement started after the third treatment in the first round. I had to have rounds of PE repeated frequently, spaced at about 2 week intervals. That was until we tried a combination therapy of PE, steroids, and Imuran, later dropping the steroids. Eventually, I was able to go to three treatments every six weeks. I had a change in work schedule that made it easily for me to do one treatment every other week. Overall, it is the same number of treatments, just spaced differently. The combination therapy keeps me stable and functioning well, if not ideally.

However, that is my own experience. Yours will likely be different. It is possible that PE will work very well, with nearly instant improvement. It is possible that after the first round, you never need another treatment. I hope that is your experience. One the other hand, it is unfortunately possible that it will do nothing for you or that you will only get at most a few days of good relief before you need the next round.

By the way, Took’s description is mostly accurate in a very funny way, but it has one aspect that is just not true. The plasma does not wait to be recycled into the next patient. It is discarded as medical waste. I suspect why Took could not move much during his PE was that the catheter ended up against the vein wall, rather than precisely in the middle. Movement then presses the vein wall and catheter together, restricting the flow. I don’t know why Took needed the strong medicine, but I have never needed to take any medicine after a PE, and I suspect you won’t need to either.

The blood pressure issue could be a bit of a problem for you because you already experience orthostatic hypertension. One solution is to eat a salty snack or drink some broth at the start of the last bottle of plasma. The salt will help kick up the blood pressure. Another option is to have the nurse infuse some extra saline. That will raise the blood pressure.

Godspeed with the treatment,
MarkEns

Took ~ Awesome and precise description of the ‘PE experience’! I think I had the same nurse ~ or a clone thereof ~ and certainly the dieticians all went to the same school together. Alas, PE didn’t work for me because after the 12th treatment I was considering converting and old refrigerator in my garage and doing it myself – how hard could it be.

I’m now on the IVIG drip and can do amazing math calculations based on drip rate technology. They told me in school that someday I would actually need to understand math and physics. Each drop is mesmerizing and eventually produces a trance-like state with a side dose of astral travel. Done right it exceeds anything Hubble has done. I look forward to my next treatment.

Best to all – life is not a gas; its a fluid.

I know it is not recycled. Just a bit of hyperbole to help make a difficult situation a bit easier. Sorry for any confusion. 🙂