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.