Smooth sailing

The insulin dose has been refined and seems to be working well. Other outward signs are good with regard to the remission holding, with the exception of weight control which continues to pose a challenge. Now the permacath is out and the weather improving I am swimming for excersize which I am really enjoying. Next week will be the time for the review post plasma exchange. That is when any further treatment will be decided.

Diabeties

I now have steroid induced diabeties. For some weeks I have been concerned about my eyesight, so I asked for blood sugar tests and they found my blood sugar was high. So they set me up with a blood sugar monitor and sent me away to record it 4 times a day for 5 days. Yesterday I was registered as diabetic and taught how to inject insulin. The diabeties educator also went though all the other concerns associated with the disease and treatment. The expectation is that I will be on relatively high dose steroids for about 6 months. Then on a small maintenance dose forever. It is hoped that once the dose reduces the diabeties will stop, but it might continue. The good news is that there isn't much change to my diet, as I was eating mostly a diabetic diet anyway and as my diabeties is drug induced the diet isn't such a big concern in my case.

Meanwhile it is a week since the permacath came out and two weeks since I stopped plasma exchange and I feel really optimistic about remission. In myself I feel like it is holding, and perhaps even improving.

Infussions

After one month of plasma exchange I have now received 12 transfussions of plasma. I have responded to the treatment. The test will be if that response remains stable over the next 3-4 weeks. If it does then we declare that I am in remission and hope it lasts for a long time. If the protine starts to return in my urin then I am likely to receive one or more infusions of Retuximab, a chemo-therapy treatment.

In the meantime the doctors are removing the permacath this Thursday.

More Plasma Exchange

The doctors have decided to give me another plasma exchange treatment, over the next 4 weeks just to make sure that we have achieved a lasting remission. After that the permcath will be removed.

Remission

It looks like I am in remission. Dr Goodman is being super concervative and waiting another week before he makes the decision to take out the perma-cath. It would be a pain to have it out and then need more infusions. My blood tests are good, but wobbling around a bit, so that makes the doctors nervous. So in summary I had 8 plasma exchanges over three weeks. Then we waited for another 4 weeks to see if the remission holds. I feel very well, with lots of energy.

Post plasma

All is looking good one week after plasma exchange has finished. I have only .5% protine in urea from both the 24 hour and mid stream collections. My Albumin is normal and the creatin very good at 111. If things are as good next week they might even mention the word remission. fingers crossed.

Plasma Exchange

The plasma-exchange is going very smoothly. I have not had problems with cramping that I experienced last December when I had this treatment. Also I feel well and am getting a lot of reading done while cups of tea are brought to me. It is a tough life.

If anything i feel energized afterwards, but that might be from sitting for so long. I can't wait to walk around. The most difficult part is not going to the toilet for 2-3 hours. (I can go during the second half of the treatment if I wheel a drip.) So the whole process takes about 5 hours at the hospital.

Half way through the course of treatment I have lost weight (fluid) and other physical signs are good. We are still waiting for my blood tests to indicate a turn for the better.