Long-term Plasmapheresis

[COLOR=black]Hello Linda,[/COLOR]
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[COLOR=black]This is a very long post, but I have a fair bit of experience with plasmapheresis to pass along. I have been using plasmapheresis to deal with my CIDP for two years. At first, I resisted the idea, but things got bad enough that I had no real choice (this was at a time when getting IVIg was very difficult). After seeing how well the process worked, we decided to keep using it. At this point, after about 100 treatments, I see no reason not to continue with it, so I would say PP is viable for long-term use.[/COLOR]
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[COLOR=black]However, there are some serious considerations involved. First, is what type of veins you have. If you have large, shallow veins, do not scar easily, and don’t need PP too often, then you probably do not need a catheter. If not, then plan on either a catheter and/or an ateriovenous fistula. Second, if you are prone to low blood pressure, be aware that PP can cause a blood pressure drop. Third, if you end up with a catheter or whenever you have venous access (during treatments), you must be vigilant against infection. If you work in a job that is dirty or likely to get you wet, it will be much harder to protect against infection. Fourth, if you have a catheter, you must commit to weekly maintenance of the device, to avoid clotting.[/COLOR]
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[COLOR=black]Let me provide more details about my experience with a catheter. I have small, deep veins, so my only real option is a catheter. My first catheter, which was intended for temporary use, was one that went into the jugular, more or less as a puncture, just above the collarbone. Once we decided to use PP more permanently, I had a tunnel catheter installed. This type of catheter enters the body at about the top of the breast, runs through a tunnel of skin (made during the insertion process) and then enters the vein near the right jugular. The catheter then continues in the vein until about 1 to 2 cm from the heart valve. The reason for running the catheter through several inches of skin is that devices that help reduce infection can be part of the catheter. In my catheter, there is a porous cuff that is designed to have the skin grow into it. That helps block infection. There is a cuff further up that was impregnated with silver, designed to kill bacteria (silver is an anti-microbial agent) for a short time (about a month). About 4 to 5 inches of the catheter is external to the body. [/COLOR]
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[COLOR=black]I have had the same catheter for two years now, with very few problems. I can’t go swimming or get into a pool or hot tub. I have figured out a way to shower, though. I have to go to the medical center once a week to have them flush the catheter and change the dressing. I developed sensitivity to the normal dressings and disinfectant, so I now use gauze dressings, which we change 3 times a week (including the medical center visit). [/COLOR]
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[COLOR=black]My main reason for resisting PP was that I would not be able to shower. However, with appropriate modifications, I find that I can. My wife tapes a dry washcloth over my catheter, only at the top. She then fastens a beauty shop cape around my neck, quite tightly. I am then able to wash my head with little concern about water getting to the catheter or about water condensing underneath the cape. After doing so, I wash the lower half of my body and my forearms, but with the cape still on. After rinsing, I remove the cape, leaving the washcloth. I then effectively sponge bathe my upper body, but using the shower to help rinse. I am very careful not to let the shower hit the washcloth. After I towel off, I remove the washcloth and check to see if the catheter’s dressing got damp. I do this by pressing a tissue very firmly against the dressing. If it is wet, water will show up in the tissue. While I have never had a problem, if the dressing were wet, we would immediately change the dressing. After that, I then sponge bathe the area covered by the washcloth. Yes, I know it sounds like a nuisance, but it is not that bad, certainly when compared with not walking.[/COLOR]
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[COLOR=black]There will come a time when the catheter fails, from a clot, an infection, or just old age. I may be able to have a new catheter, or I may have an ateriovenous fistula made. An AV fistula is made by attaching an artery to a vein though a small hole (fistula). The reason for doing this is that the arterial pressure increases the size of the vein. Many hemodialysis patients have this done and it works well.[/COLOR]
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[COLOR=black]My only serious complication from the PP itself is low blood pressure and especially orthostatic hypotension (a blood pressure drop when sitting from a lying position or when standing from a sitting or stooped position). Being well hydrated helps, but sometimes I just have to wait for a half an hour or so while my body adjusts. A much more minor complication is that I sometimes feel a little tired after the treatment; well, not really tired, but just sort lethargic. If I take it easy, I am fine by the next morning. That is why I try to make sure that my treatments are in the afternoon. [/COLOR]
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[COLOR=black]My PP itself is done at my medical center. [The machine itself is pretty big, so home use is out of the question.] From check-in to leaving takes 2.5 hours for me. I am a fat guy, so it takes longer for me than it would for a thin woman. I once had my treatment done at the same time as a young woman, and she was in and out in about 1.25 hours. I have three or four treatments, done every other day (skipping weekends) done every 4 to 5 weeks, but you will probably need some other schedule.[/COLOR]
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[COLOR=black]I hope this all helps you in your decision and Godspeed in your treatment,[/COLOR]
[COLOR=black]MarkEns[/COLOR]