Birthday

It was my birthday yesterday, now 48. I thought I'd better update the blogg with my status. I am anemic and therefore quite tired. The white blood cell count is also low. The doctors have reduced one of my immune suppression drugs, called Myfortic to see if my system will recover on it's own. The morning sickness symptom has reduced since this change, but I am still tired. Also the dose of prednisolone has come down to as low as they will go in a transplant recipient. It was reduced to 5mg last week and I have started to loose a little weight, fingers crossed this continues. I have also stopped being diabetic. They took me off the insulin on Tuesday and I have had good sugar levels since then. The retuximab infusions seem to have stopped me getting any worse. My stat's haven't changed much since November 2010, so that probably means the progress of the disease has been slowed or paused. They cannot know for sure unless they do another biopsy of the transplanted kidney. So I am expecting they will ask to do that in the next few months. Meanwhile they are doing an ultra-sound of the abdomen in case the low blood count is due to a slow bleed.

December update

I am feeling quite well and hopeful that the two retuximab infussions may be doing their job. Meanwhile the doc's have reduced the steroids. They are slowly bringing the dose down and the amount of insulin I need is reducing in line with that. My weight is stable, but still far too heavy. The trouble I have had with my knee, due to the weight, is improving to the point that I can walk around reasonably well once more. In short things are looking good.

Coming up to the first anniversary of the transplant I am feeling strangely nervous. I have no desire to re-live the hospital experience of last year, but I am grateful for all the improvements it has brought to our lives. So, looking forward to Christmas at home and holiday at the beach as normal with the family.

Retuximab Infussions

I had the first infussion of Retuximab, a type of chemotherapy, thursday week ago. It was trouble free, with no adverse effects. I seem to to coping well with the aftermath, but no clear improvement. Tomorrow I will have the second dose, fingers crossed that I get improvement after that.

Remission short lived

I am no longer in remission. As the head of Transplant feared my protin loss is greater than 3% now. So the plan is to have the retucimab infussion/s starting early november. This is a type of chemotheropy and will supress my immune system, so I will become prone to catching whatever is going around once more. The current research shows the sooner in the relapse Retucimab is used the more likely remission is achieved, so they are trying that first. There are a few other things we might try if it is not successful.

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.