So I was admitted Tuesday to the hospital to start plasmapheresis. They admitted me because I have been unable to take mestinon, so I have been pretty weak. I came in with a nasty kidney infection and an ear issue. I have not been able to hear very well, I have had a cold for over 8 weeks. I am finally much better but my ears are plugged. So to get on with it. On thursday I started passing kidney stones. They did not start straining my urine until saturday. They make you go in a hat to measure all your urine.

Anyway they finally decided they should consult a uroligist today. After much "encouragement" from me. I have not passed anymore stones but have had a lot of sediment. They also check your sugar 4 times a day, before meals and bed. Mine has been high, just 150s, a few times. It's not really high I know, but they made me have an insulin shot anyway. I have only been seeing neuros to this point. And almost a different one every day. A few of them have been hmmm how to put it, rude and do not know how to communicate. One pretty much said my expectations were off, like I should not have expected anything more than pheresis.

So I am clear of infection and my kidneys are not hurting so much. I am still passing sediment but thats all. I have had three plasma exchanges. I unfortunately still feel pretty weak, more so than when I came in. I probably see the surgeon tomorow so if he is comfortable with moving ahead I am. I trust him. The whole process of having the pheresis catheter and the exchanges was a bit overwhelming. I looked and looked online before so that I would know what to expect, I could not find anything. So I was thinking of putting a step by step process in the useful info at the top if they would let me. What does everyone think?

Hope everyone is doing well. I read a few had the thymectomy already. I am having the less invasive one, where they go through the neck and not split the sternum. I hope you all heal well with no complications and quickly. Take care all and I will keep you updated.

I can't wait to get jealous about how much easier a recovery you have with the cervical thymectomy than I had with mine! I wish this would have been an option to me, but I'm glad it is an option for those of you just facing it now. I had gone into mine thinking "no problemo!", since I had 2 cervical discectomies with fusion (they take a bone chip from your hip) and plates that each took over 12 hrs.

Unfortunately, my thymectomy caused yet another disc in my neck to go, so I was dealing with severe pain from that while trying to recover from the chest surgery so I'm not a good one to ask about thymectomy pain from the sternotomy approach.

If they had this available it would have saved me a disc in my neck and a third fusion! Se la vie.

It sounds like you are having the tough time leading up to the surgery, so I say you've paid your dues and the surgery is going to go beautifully and you will be able to look forward to, at the least, a reduction in meds but my money's on a remission! I know, I know, there are no guarantees, but that's what I feel will happen for you.

I'm so excited for you!

Relax, take care, let us know how it goes, and keep the faith! Know that we'll be right there with you.

HEy there! The pherisis is a bit overwhelming - I know I had a little "episode" when I was first admitted - screamed @ Mike for 3 days straight - got to where the nurses suggested I take an antidepressant - thank God for that!

I think it would be a great idea to tell people what it entails......that way it isn't so scary, since they have an idea what to EXPECT!!!!!

I am sorry to hear you are going through so much......I promise you, it does get BETTER! Truly!

It is great that you are having the less invasive surgery...........You will feel like a new woman!

How are you today? Are you stronger?

My thoughts and prayers are with you!
Big, big hugs!
ERin

I am very happy that I get to have the cervical thymectomy. Altho there is a small chance they will still have to crack my sternum. But I am sure everything will go great. I agree I think I paid my dues too. That was exactly the way I have been thinking. My grandma has had two fusions in her back. They are very painful indeed. I am sorry you did not have the option.

Thanks for all the encouragement! I will try and let everyone know how it goes. It may be awhile afterward.