No, I have not tried plasmapharesis yet. My next IVIG is scheduled in 2 weeks and I want it cancelled. I want to try plasmapharesis to hold me over until I can get a thymectomy. I am feeling so weak, even a walk to the mailbox (10 yards) makes me feel ill. I need some fast relief.

kathie

I would think with the kind of reaction you had, which sounds pretty serious, they wouldn't want to try it again.

I cancelled the IVIG that was scheduled for 2 weeks. I called my GP to see if he could release my blood results online. But he said since he did not ordered them, he would not release them. So I called the neuro office. The office assistant said the neuro would see them when he gets back from vacation on Wednesday. I asked to move up my appointment, they said no.

So I have a bunch of abnormal blood results, that were so bad they needed them repeated in 3 days. Now no one will look at them or give me results for a week. I still feel very bad. Did I mention I fell down the stairs on Sunday. Luckily it was only a few steps. I am so disgusted.

I do not know what to do to get comprehensive medical care.
kathie

Kathie, I am so sorry for what you are going through. Believe me, I totally understand.
My doctor, that ordered my Ivig, called me personally this morning to see if I was over my reaction yet, and I was so shocked, I almost hit the floor in disbelief.
I have been so frustrated trying to get plasmapheresis, and there is such a breakdown in communication and I am thinking even caring about those of us suffering, that nobody takes responsibility anymore. He only ordered the Ivig to try because I couldn't seem to get plasmapheresis and could not get past the office staff at either the neuro or the nephrologist office.
Did they even give you an order to get the tests repeated, or is that something you have to wrangle out of them as well?
I have been left with a catheter in my jugular vein for two months and no one will take responsibility for that either.
I will think long and hard before I will allow anyone to put something in my body and just go their merry way.
I feel so bad for you because I know how it feels.

Limpy, I really need to check my understanding. Are you saying that you have had a catheter in your neck, and have not received plasmapheresis for two months? And if so, is anyone at the hospital taking care of the line--draining/cleaning?

Ding ding ding! Yes, you are right. I practically had to walk over hot coals to get them to change the dressing. I was told by the nephrologist's nurse that it did not need to be flushed, even if I had no treatment. The longest period of time that I have found between flushes of an unused catheter is one month. It is a double lumen tunneled catheter packed with heparin. But not to worry, because I let my Ivig nurse know that I had it and she came prepared to flush it and change the caps.
The stuff she drew out of it was nasty and she couldn't believe it had gone that long either. She flushed and refilled it with fresh heparin, so I am good for a while now.
She even said that if I could get a Dr's order she would come to the house and change the dressing! It's a shame I had to go out of state to get proper treatment.
My neuro told me not to wait till my next appointment before calling if I needed him. I have done everything short of sending up smoke signals to get in touch with him so I could get plasma, but had to get my neuro at UF to order Ivig instead. And he managed to call and check on me??? Sorry for ranting again, but it is hard not to.

Limpy, I am so sorry you are having such issues too! But that makes me think twice about trying plasmapharesis!

I am sitting tight for a thymectomy and not letting them try anything else. There is on one to take care of you if something goes wrong. The office tells me, if you feel worse, go the ER. I am a single parent and I cannot go the ER. Who will take care of my teenage daughter! Is the ER the only place you can get medical treatment? I thought that was what the doctors who know your history and treatment were suppose to do.

If I knew a place that I could get the right treatment, I would move there. I am going to have to be dealing with this for the rest of my life and I cannot tolerate this kind of treatment. I will not survive it. And I have no advocate to go with me to help. I am on my own.

This disease is very isolating. My own GP wont even help me.
kathie

You can get a temporary cath put in for plasmapheresis that they do in the hospital then they take it out when your done. I had this one put in this time to be able to have it outpatient. I think that is where I made my mistake. Out of sight out of mind. I have been told to go to the ER, too. But what are they gonna do?
Tell you to follow up with your doctor. I have been tempted to just drop by there and tell him what is going on, that he probably has no clue about.
I feel exactly the same as you do, Kathie, and I am so sorry for you. At least I don't have kids at home to worry about.
I have an appoint,ment in the morning so maybe, I say with my hopeful voice, I will get it all sorted out then.
I will be thinking of you and saying a prayer for you and me.

Did I win anything?

I find your situation, unique, to say the least! I'm relieved to hear that the IVIG nurse took care of the line for you. Heparin hasn't been used here for quite some time. Instead, they are using Sodium Citrate--just an FYI in case they switch it on you. I cared for my own lines at home during treatments. You'll want to watch closely for infection.

I take little advice from a nurse/girl "at the front desk" unless he/she is a nurse practitioner, or is passing on information from my physician, or is one the brilliant nursing staff here, at the Apheresis Unit.

And as far as I'm concerned, whomever ordered the line for you is responsible!

*Note to Canadians--plasmapheresis is given only pre-thymectomy, or to brittle myasthenics. In other words, it's to keep one out of the hospital, and ICU, so generally speaking, if you are not experiencing concerning symptoms, you aren't a candidate. There are always risks involved with this treatment, and it's far too costly to use as a "feel better."

Kathie, I am interested to know why you cancelled.