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.

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.

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.

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.

Platlettes and late nights

After a very full morning at the hospital, I had some good and some not so good news. On the good side the Hemeroids that had been troublesome at first after the transplant have all but gone. All the blood tests except the White blood cells and platelettes are okay. Which brings us to the platlettes which have been low but are now very, very low. This opens me up to potential infections.
It was decided after some debate to inject me with something to stimulate bone marrow and therefore blood production. This will hopefully not start rejection of the new kidney, but it is a slight risk. So where does the sleepless night come in? I hear you ask. The injection has caused terrible bone ache. It is mostly in my hips, spine, ribs and head. This is why I am having trouble sleeping.
I will be hiding from the world for a while waiting for an improvement in the white blood cells. So far I haven't come down with anything and I'm hoping to keep it that way.

2 months

Two months on from the transplant.
I feel well. The benefits of a working kidney are many. I feel intellectually brighter, my underlying health is better, all the complications of the kidney disease FSGS (Focal, segmental Glormoi, sclorosis) such as stroke risk have gone. My outlook is more optomistic and I have healed well and have very little post opperative pain. My restrictions on diet have all been lifted and my medications have all changed. The new kidney function test results are very good. All this results in me staying up later without getting tired and being able to do more each day.

On the other hand I am still quite numb around the wound site and in an area at the top of my left thigh. I am suffering symptoms that are side effects of the cocktail of drugs I am taking. The most obvious one is weight gain/ fluid retention from the steroids. I also bruise easily and my skin is starting to break/ split easily also due to the steroids. You might have noticed changes in skin pigmentation and hair growth as well.
More seriously is the issue of ballancing the drugs so I don't reject the new kidney, but also have enough white blood cells to fight off infections. The pressent battle is to stop the decline in white blood cells, which has lately become a bit alarming. Stuart has unfortunately caught a heavy head cold and has kindly moved out to a hotel for a while, so he doesn't infect me or the kids. I have not been game to take a swim yet despite being allowed to, due to the risk of infection at a public pool.
Unusually for me I have been struggling with high blood pressure since the transplant. This conbined with the weight gain and fluid overload has made controlling it dificult. The fluid means I don't absorb the tablets properly and the weight adds to the problem. Consequently my old knee and foot problems are flaring up.

Despite all this I do feel there is a new spring in my step and I am looking forward to further improvements over the coming months. I regularly chat with the two other transplant recipients at clinic on Wednesdays. We have each had our individual issues. They have both had to have two earlier biopsyies. (I am due to have mine next month.) So I think I am doing okay compared to others.

47th Birthday

I turned 47 yesterday. Let's hope it is a good year. There is good news. I am allowed to take a bath for the first time since the permacath went in. That was on the 4th december 2009. I can even go swimming. Although I still need to be careful not to catch illnesses. The blood tests are still looking good, fingers crossed. I am also able to start lifting things.

Removal successful

For once I seem to have had a straight forward easy procedure. The stent removal was quick and painless. I have no ongoing pain, just a small twinge now and again in the region of the transplant. I was surprised at how long the stent was, about 10 cm. But it is out now and I am happy.

Stent

The time has come for the stent that is in the tube between my new kidney and the bladder to be removed. Sadly, yes, it comes out via the ureta. So I am off to day procedures on Thursday for that experience. I am told it hurts for about 24 hours afterwards and then settles down. The doctors are quite happy with how things are going at the moment. Stuart has arranged to work from home on thursday so he can pick me up after the procedure.

six weeks post transplant

Six weeks on and I am feeling better than before the transplant. It is hard to remember what normal feels like after 8 years of illness, but I think I am fairly close. I find myself running short distances without thinking and generally feeling frisky. I have started driving again and I walked to the station and caught the train in to the hospital on Wednesday, no worries. I have even been doing a little gentle Yoga in the mornings. The blood tests are still fluctuating but currently are okay. On the down side, I am still putting on weight despite easing back on the binge eating that I did after my diet was removed.

Drive

This week has been mildly event free with blood tests mostly being satisfactory. I have been feeling better and better in myself. I have been a bit more socially active too. Catching up with many of you at book group on Sunday and at a BBQ today. Also with individuals at morning and afternoon tea dates during the week. So far I have managed to keep free of illness. Stuart and I made it to Vic Market today and got some lovely fresh fruit and vegies.
When I got into the car to try driving it came easily with no problems at all. Stuart is hoping he might get the all clear to drive at his appointment on Monday. He unfortunately broke a tooth today so he will be off to the dentist soon also

Sunday 17th Jannuary 2010

It has been 1 month since I had the transplant and things are going well on balance. The kidney is working well, despite a few wobbly blood test results in the last week. I am recovering well from the surgery and the scare is looking quite neat and only twinges now and again. the removal of the permacath has left me with a bit of brusing, but that is healing up nicely now. I am feeling some side effects from all the drugs I am taking, but on balance I feel more well now than before the transplant and the hope is this will continue to improve with time. I am definately brighter intelectually and my underlying health is good. The kidney function is near perfect and the need for anti coagulants has gone. My diet has been relaxed to a 'normal healthy eating diet'. The best news of all is there is no sign of the kidney disease returning in the transplant. That means I will have a disease free period. We don't know how long it will be, it could be 6 months or 10 years. I'm hoping for 10 years.

Alarm over

After the blood tests today, everyone took a deep breath and relaxed, My creatinine level had gone from a fantastic level of 70 on Monday to 94, then 107 on Wednesday and Thursday. Sparking an alarm that I might be in a rejection faze, However it has dropped back to 90 today and the ultra- sound didn't show anything to worry about either so a biopsy wasn't needed. I am happy to be at home rather than over night in hospital.

Glitch

There has been a bit of a glitch with my blood tests over the last two days. On Monday everything looked great, but now two tests have come back worse, so I have to go in early tomorrow for more blood tests and an ultra sound to see how things are going. They are worried there might be an obstruction of some sort. They might also do a kidney biopsy. If they do it will probably mean another night in hospital for observation on Friday night.

First post Transplant Clinic

I was kept busy all morning with blood tests, nurses assessments, talks with the transplant coordinator about medications and infection risks and what to expect in the coming weeks and months. I also saw a Nephrologist about the medical side, all of which looks very good at this point. I will be allowed to drive after the 22nd January, assuming I feel up to it, and I will be able to take a bath and swim at the 8 week point. That is after the 22nd of Feburary and after the stent has been removed from my new kidney. My medications have been ajusted again, and seem set to slowly reducing doses, although I am still regarded as being on a high dose of immune suppression and have to be careful of infection. I now have a folder full of information to read before next weeks appointment.

diet

Diet. Did I mention diet? the doctors have relaxed all my dietary restrictions. I have been advised that I should follow a healthy eating diet, same as all people should. That is tend towards low salt and fat and not too much sugar. I can even have alchohol in moderation from february onwards. I am being told to eat dairy to replenish the calcium I have lost, and no restriction on protine. On special occassions there is no restriction what so ever. Yippy.

Discharged from St Vincent's Private

The permacath removal took place yesterday under local and all seemed to go well. Then at 10pm last night I got a racing heart, cold sweat and dizziness. It turns out I had some bleeding into the chest wall that caused atrial fribulation. It isn't a heart attack, but I was moved to the cardiac ward for close observation.

They Tried massage and excersizes to stop it. i was very impressed. When that didn't work they infused me with magnesium and potassium and gave me saline and blood pressure lowering tablets. It calmed down at about 4am this morning and I have had no more problems with it. It is a very common side effect suffered by chronic kidney patients.

Perma-cath Removal

I'm off to St. Vincent's Private Friday 8th January to have the perma-cath removed. It will be done under general anesthetic and I will be kept in overnight for observation. They don't want to take any chances after the bleeding problems I have been having.

I would like to take this opportunity to thank all of you who have been giving me lifts to and from hospital. It has been really lovely being greeted by a friendly face in the mornings and catching up with your news. While I have been sore it has been an invaluable help and made life so much less stressful.

Also the whole family have been treated to an almost endless supply of delicious meals, from a wide and overwhelming variety of donors. This week, for example, we have tucked into a delicious shepherds pie, Tuna and rice salad, Vegetarian lasagna, Spaghetti bolognese, fresh fruit salad with passionfruit yogurt, cup cakes, mince pies, chocolates and fresh fruit.

Stuart cooked BBQ lamb and rice one night and fresh fish with mashed potato and salad another night. Thanks to everyone for your generous contributions. It does make it easier knowing that if we are tired there is something ready to be heated up and served.

Stuart's function is returning to his wrist and I am less sore and tired each day so we are more and more able to cater for ourselves. Once again thank-you all for your help.

Thanks also go to the friends and family who have taken the girls out for fun outings and sleep-overs. This has helped reduce the stress on us, and given them something to look forward to.

thursday 7th Jan 2010

Further small improvements to report today. Firstly I have been cutting back on the panadol, as the pain is reducing noticeably. The blood tests are showing an Albunum of 38, which is great. There are trace amounts of protine in my urine, but my native kidneys are still functioning a little, so it is coming from them ( poor scared things). I saw the Haematology expert today and he has ordered a large number of tests to determine if my risk of stroke has gone due to the normal kidney function. If so I will be taken off the anti coagulants. The renal doctors have reduced my dose of Prednisolone, a steroid used to help with immune suppression. So everything is heading in the right dirrection. Yippy.

Tuesday 5th January

A bit of a marathon again today at the hospital. I am now getting my blood taken at pathology in one building. Which means I then have to walk to the other building to get my blood pressure done and any scripts sorted out. If I have a script to fill then it's off to the pharmacy at the other end of the hospital campus and back to the public hospital for any appointments. Well at least I am being forced to get my daily walking done. They have reduced the dose of immune suppressant yet again, which means the kidney is not rejecting. All blood tests are looking very good still.

Today they told me the details about the removal of my permacath. I was feeling nervous about the procedure, but feel much more confident about it now after seeing the social worker and getting detailed information from Emily, one of the Nephrolgists.

I will see the phycologist tomorrow. She will help me cope with the physical and emotional changes. Also I have an appointment with the dietitian and possibly the transplant nurse. So it looks like another long day

Monday afternoon 4th Jan 2010

Had the stitches out today and the wound is looking good. It runs along the line of my pelvis from groin almost to the hip in a slight sideways smile, on my left side at the front. The Ultra sound showed the fluid that has been collecting around the new kidney is only a small amount and is being re-absorbed as hoped. All the blood tests are very pleasing at this stage and my urine is not frothing which indicates that it doesn't have protine in it, which in turn indicates the original kidney disease, FSGS, has not returned.

Monday 4th January

After being home for 5 days now. I am settling into the daily hospital visits and regular tablet taking. The frankly rather tedious existance. I can potter around the house, but I am rather slow. I can read and watch videos.