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.

Infussions

Stuart and I had a really good meeting with the head of transplant on friday afternoon. He was pretty positive about my chances after the reccurance of the disease. He personally went to pathology to look at the biopsy. The damage has just started, so we have caught it very early. So far there is no measurable effect on kidney function. In short the doctors think I have a good chance of going into remission for several reasons; I have achieved remission in the past with my native kidneys, I respond to the treatments they have available and the progression of the illness in me in the past has been slow.

Choices are limited but there are a few treatment options. There is a new discovery OS, a sugars treatment which we might try as a trial. He is investigating further to see if I could be a candidate. If desperate we could try Cyclophosfomide again, but I have had two courses of that in the past and another one increases the risk of cancer alarmingly.

The option we are going to try is infussions of Albumun with high dose of steroids. For this I had to have a new permacath put in yesterday. I also had the first session of plasma exchange.

( you may recall they used this treatment before the transplant to reduce the FSGS in my blood). I can already feel the difference in my adema (swelling due to fluid retention). Apart from the localized pain of the recent surgery I feel good.

I will have three infussions per week for 2-4 weeks, possibly followed by Retuximab infussion/s.

I am back for my second session today it starts at 9.30am and we expect I'll be out by 2pm.

Permacath Inserted again

I haven't had the briefing consultation about planning for my future yet. That happens later today. I do know that a permacath will be inserted tomorrow so I can recieve infussions. This is an attempt to put the FSGS ( my original kidney disease, which is a systemic disease) in remission and therefore make the new kidney last longer. Now the disease has got into the transplanted kidney it will destroy it. ( I knew there was a 50% chance this would happen) The idea is to keep it functioning as long as possible. The transfussions will happen over the next few weeks I expect. The permacath will be removed after about 4 weeks. I expect it will be Retuximab and Albumin that I am infussed with. This is a type of chemotheropy.

SGS

The Segmental Glormori sclorosis has returned. The doctors have found it in my new kidney after performing a biopsy on Wednesday. This is disapointing news. I should have more information next week although my options appear limmitted. They intend to try to put me in remission with the use of infussions of Albumum and Retucimab.

All Good News

Yesterday I heard that there is no longer any BK virus detectable in my blood. Yay . They are checking the urin, just to be sure.

To make the week even better the last outstanding trauma insurance claim was approved ( this one took 2 1/2 years) so we should have the money next week. Double Yay.

Last week I got the all clear from the hemeroid doctor. They had played up after the transplant, but are good now and best of all no need for surgery. Hip, hip, horay.

Generally feeling well and optomistic.