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.

5 months

Nearly five months out from the operation and I am almost onto fortnightly visits to the hospital. The doctors and I are trying to get the balance of my drugs right, To the point that my body can fight the BK virus I have in low levels in my blood. Meanwhile the head of transplant has a new theory about why my creatnin levels have been up and down. He thinks I may be super sensitive to one of the drugs (cyclosporin). Common sense supports this theory as I have had problems with both red and white blood cells getting low. I am not a candidate for the other drug that Can be used (commonly called tac) as it has a worse record with BK virus. There is another group of drugs that some people switch to after about 6 months, but this group of drugs is containdicated in recipients with .5gram or more protine in urea, (ie they may cause catastrophic rejection). I have about 2grams of protine in my urin so that group of drugs is out also. It seems I am stuck with the current cocktail.

BK Virus

The creatnin jumped up again as soon as I left hospital. In one of the urin samples they cultured BK virus. BK is a virus diagnosed first in the seventies in a person with those initials. It is one we all get as kids and it remains inactive unless you become immune suppressed. 5% of transplant recipients develop active BK. It can damage the kidney. The effects can be reversed if caught early. Otherwise it is like a mild flu, aches in the mussels and systemic tiredness, but not bedridden.
In the last two weeks of April I have been in and out of hospital having tests and more tests and Yes, they did do another biopsy last Friday. The result of all this is no firm diagnosis, but all the indications are that it is BK virus.
For the time being the doctors have halved my immune suppression medication (cyclosporin) to allow my body to fight the BK virus. They hope that I will not start to reject the transplanted kidney while this is happening. The doctors are monitoring me through blood tests three times a week. So I am going to see a lot more of the hospital for the forseeable future. Meanwhile I had the skin clinic check and they cut out two suspect moles and froze off a viral wort.
After a week of lower cyclosporin I am feeling a lot better, so I am optomistic that I am recovering from the BK virus.

Four months on/ or What a cold can do

Everything was looking good after the three month biopsy came back clean. There was a longer microscopic test that took weeks to produce a result. it came up with a very small anomaly that is not diagnostic of anything, but might indicate a problem brewing.
I went to Perth for the Jewellers Conference and had a great time. Whilst I was there I developed a cold.I was quite pleased because I felt like a normal person with a cold. Before the transplant a cold would wipe me out for days or even weeks when I had to take to bed.
This time I had cold symptoms but didn't feel too bad, but the doctors at the hospital wanted me assessed anyway. So I spent the day after returning from Perth sitting in emergency( with a cold feeling like I would really rather be resting at home) from 10am until 3pm when they finally saw me and sent me for a chest xray ( it was clear). I was released at 6pm (feeling like I had wasted everyone's time).
Next morning, on Wednesday, I was back at the hospital for my clinic appointment. all seemed well. That afternoon I was recalled to the hospital for an extra blood test. Thursday morning I got a phone call to pack an overnight bag and return to hospital for more tests. In brief my creatnin level had risen from 120 the previous Wed to 220 a week later when I had the cold. So they ultra scanned me, gammer ray scanned me, blood and urin tested me and couldn't find anything wrong other than I had a cold. They wanted to biopsy me, so I was fasting, and arguing againsed it. (By this time I may have been a bit annoyed)
The blood tests showed improvements in the creatnin levels to I escaped without the biopsy.

Good News

There is no FSGS in my biopsy sample. That means the old kidney disease is definately not there. There is no way to know how long this situation will last, but I am in remission and being encouraged to resume a normal life.

Second Attempt

Yesterday I went into day procedures for a second try at getting a biopsy sample. I arrived at 9am as requested and was prepared and ready to go in theatre at 11am. Then the surgeon asked if I had fasted, which I hadn't because I was not told to and didn't need to last time. The imaging staff use a different type of anesthetic to the renal doctors, so I was sent out to wait until 1pm. The procedure happened and two small samples were taken. We are hoping that is enough for pathology. The material they got last week was only fat and mussel, no kidney at all. The surgeon yesterday, said it was one of the trickiest biopsyies he has done. After the post biopsy 4 hours on your back and 1 hour sitting up, I didn't get out until about 7pm last night. Now I am on light duties for another 5 days, no running, no lifting heavy things.

Biopsy

It took three attempts today to get a very small sample of my transplanted kidney. It has gone to pathology. If it isn't enough then i will have to have another biopsy next week. I now have to rest for 5 days and hope next week isn't a repeat of this week.