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.