Lucky 13

I had just turned 39 when first diagnosed with FSGS in 2002. Now as I approach my 52nd birthday I decided to reflect on the journey and write an update. In December the 5th anniversary of my transplant passed. It has been a blessing, enabling me to carry on living a relatively normal life. Despite the FSGS recurring in the transplant there have been no problems with rejection and I can't thank my Mum enough for the donation of her kidney.
When asked, I usually describe my physical condition as similar to that of a geriatric. I suppose people think I am being dramatic, but it is as accurate as I can be without boring everyone with the details. For those who are curious this is what I mean.
Most of my struggles now are a result of the various treatments. (I am well aware that without these treatments I would not be here to struggle.) Mainly continued lethargy and general weakness. Then there is the struggle to keep my weight from further gain. (I have given up trying to loose weight) The painful knees, hips and feet make walking problematic for longer periods or up hills. I have trouble caring heavy items or even a full shopping bag. When I do manual activities like build Ikea furniture or exercise with hand weights the capillaries in my hand pop, leaving them sore and bruised. My blood pressure goes down when the weather gets hotter and up when it cools down. My gums grow too long over my teeth and I have strange ridges inside the roof of my mouth. My facial hair is unusually luxuriant and requires regular attention. I bruise readily and my skin is thin and prone to break. I now have a sensitive digestive system that plays up at the slightest provocation. My sense of taste is effected. My perspiration and breath stinks. I have developed sleep apnoea. For my age I have weak bones. I get sinusitis, every night it is hard to breath through my nose. If I don't use eyedrops I get eye bruising from dry eye.  My eyesight has deteriorated at an accelerated rate.  I now wear glasses all the time. My hands shake if I try to do fine work for more that a few minutes. I have to be careful with my diet, and exercise regularly because I am likely to develop diabetes and osteoporosis if I do not. On ladders I have noticed that I am less stable than one would hope so I am not game to clean the gutters anymore.

Improvement

I've been on Galactose now for 9 months and am the fittest I have been since diagnosis. One of my measures has improved from 300 before galactose to 72 at last reading. That is about an 80% gain. I was very well for our recent trip overseas to Europe. I had to pinch myself at times to remind myself that I had actually made it back to Britain. I thought a few years ago that it was an impossible dream.

New year

It is coming up to the first review after starting Galactose. Generally it seems to have had no clear effect on the disease. However I feel improvement. I have more energy, can stay up late and am not suffering from muscle pain when exercising. In the last few days I have had a mild virus and felt unwell . It has brought back to me just how much my health has improved since the transplant.

2012 up-date

In response to some requests for an update. I am feeling well. As well as I have felt in the past 10 years. At Easter it will be 10 years since I first had symptoms. It is just over two years since the transplant. In January this year I had an operation to repair a hernia from the original transplant operation. As a result I have been on light duties for a few months. The procedure was a success, but set back my gym work.

In October last year I started doing a modified weights program at the gym with three main aims to retain mussel and bone strength, prevent diabetes returning and improve general health and well being. It also had the unexpected benefit of a dramatic improvement in my knees. I have only just returned to the gym in the last week and hope to regain lost ground especially in my knees, which have started to play up again.

Lately I have been bothered by sinus problems. It started in January with a bit of hay-fever that became an infected right sinus. I have struggled with it for months treating with antibiotics and irrigation. The good news is I wasn't hospitalised with it and It seems to have eventually cleared up. ( I was hospitalised with acute sinusitis last July for 5 days).

The other problem I have been Getting help for is gastric. This one has been with me ever since the op. It is almost certainly the tablets I take that are aggrivating my digestive system. I have been to see a physiotherapist who specialises in this area. Don't ask. Yes there are exercises. The chances of my tablets being altered to help with this problem are slim, as the risks are high.

Medium term, if my health, holds the family are planning to travel to Scotland next year to show the girls Stuart's birth place and to see the remaining relatives before they all die out. Stuart is saving up his annual leave this year with that in mind. So we are only going away for long weekends in 2012. The replacement of the garage is another medium term goal we hope to get the wheels turning this year on that project.

For the time being I am leading an entertaining life. With regular social engagements such as Monday morning coffee with the School Mums, Hosting board games each fortnight and going out for the same every other week. Also a movie each month with a friend and Girls night out for dinner also monthly. Not to mention teaching Kate and her friend Art on Tuesdays after school and driving Vicky to Choir each Thursday where I take the dog for an hour and a half walk during waiting time.

My Voluntary work keeps me on my toes with regular Wednesday tutoring at the Global Homework Club in North Melbourne Library and Fridays helping in the kitchen at the primary school. I have started assisting with Guides Melbourne District. We are forming a parents support group. I do personnel work with the Scouts and Guides at Camberwell Showtime most weekends from May to August. At the primary school I am on the Community Development Committee. We have just organised a very successful fete. I have been enjoying doing a bit of training lately including Strategies to help refugee children learn and Mental health first aid for teenagers.

Short term Stuart and I are planning to see some shows at the Melbourne Comedy Festival and do a bit of maintenance work around the house. Oh that's right I also run a household, (rather poorly). Bye for now. Jane

Clear sailing

All seems to have settled down. No biopsy happened because the creatin dropped to 141, with drinking lots of water. Yesterday I had an iron infusion to help with anemia. With the disease in remission and the other weird test results back to acceptable it looks like clear sailing for a while.

Februray Update

The Creatnin has gone up to the 190's and protin is 1.5 grams. As a result the doctors want to biopsy again.

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.

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.