This time last year…

I was sitting in Manchester Royal Infirmary waiting for a kidney transplant. The kidney finally arrived around 11pm and I was taken down to theatre shortly afterwards. So today is my official anniversary of getting Sidney the kidney. What a year it’s been, the transplant went well but in the weeks and months afterwards I became severely dehydrated and had to be hospitalised, developed Leukopenia due to one of the anti rejection drugs (leukopenia is a severe lack of white blood cells, dangerous because it leaves the patient seriously at risk of infection.)

By the summer I was feeling better and enjoyed the first half of the summer holidays sewing, gardening and attending weddings. I was due to attend my nephews wedding on the 15th of August but woke on the 13th with a temperature of 40.5degrees, shivering and vomiting. Our GP came to visit and immediately called an ambulance, probably saving my life in the process. Arriving at the hospital I was given fluids and started on antibiotics. Over the next two weeks I had two further episodes of very high temperatures, rigours and vomiting, in each case my blood pressure dropped dangerously low and more fluids, steroids, antibiotics and oxygen were needed to help me survive. Once home I suffered a further relapse less than a week later and returned to the A&E department of the hospital where I required resuscitation as my blood pressure dropped so low. I’m now home again recuperating, the sepsis had left me with difficulties standing, walking, poor balance, I have difficulties concentrating for long and get tired very quickly. I am however very aware that I am one of the lucky ones to have survived sepsis with only minor problems. The infection came not from my transplanted kidney but from one of the old kidneys which may need to be removed once the infection is finally gone. I will need to take strong antibiotics for some weeks yet to ensure that it is destroyed. During the weeks in hospital my transplanted kidney did lose some function but the fluids, steroids and other treatment  protected it as much as possible and the function is gradually improving again.

So it’s been an eventful year, I marked today’s anniversary by walking round the full block with my walking stick, the furthest I’ve walked for the past couple of months, in the sunshine. I thought about the donor and gave thanks for his/her generosity in registering as a donor and that of the family for carrying out those wishes in the difficult hours after the death of their relative.

27 Dresses

This summer has been a summer of occasions, dressy occasions which has been very exciting. However my wardrobe was not full of appropriate “occasion wear”  outfits so over the last few months I’ve done a fair bit of shopping and making. My first shopping spree in April was for dresses suitable for dining out, weddings etc and I bought three dresses. Number 1 from Viyella is a plain cream dress with some black flowers stitched onto it and a narrow black belt.

 

There was a matching jacket available but it was very short and had three quarter sleeves that barely passed my elbows, I have yet to find a suitable cream jacket with sleeves that are of any use, i.e. Do what sleeves are meant for, cover my arms. I have some black patent shoes and a plain black cardigan so just need a small black clutch bag to finish this outfit. The flowers are removable (with a pair of scissors)  so it can be worn with other colours. I wore this dress to Sarah’s wedding in June.

My next purchase was a black and cream “monochrome” patterned dress, also Viyella (I had some Viyella vouchers to spend) 

 

This is is a fairly plain shift dress, there is a matching scarf available but I wasn’t sure I’d want a scarf with a summer dress so didn’t buy it. I wore this dress to Sarah’s pre-wedding dinner.

Dress number 3 is a Phase Eight dress and by far my favourite of the three. It doesn’t dip at the left side of the hem as it looks in the photo I’m glad to say. It is a lipstick red embroidered dress, beautifully lined with a net petticoat to give it extra flare. I have some matching red sandals and am knitting a red cardigan to wear with it. I’m planning to wear it or dress number 4 for my nephew’s wedding in August.

Dress number 4, I’ve also ordered one more from Hobbs, which is Delphinium blue. I’m waiting for that one to arrive. The reason for this extra dress is because I’m having some problems with fluid accumulating in my legs since the transplant and often can’t wear the shoes I plan to e.g. my red sandals. I do however have a pair of delphinium blue sandals which are comfortable to wear but don’t really go with any of the above dresses.

 

I love the look of this dress, and the colour but I’m not sure about the fabric, which yet again is polyester. Almost all the dresses I’ve liked in the shops this summer have been polyester, even the red dress above although it feels like cotton. It seems such an odd idea to make dresses for warm weather, and this year hot humid weather, in a fabric that doesn’t breathe.

That is the sum of my bought dresses, I’ll photograph some of my summery makes for next time.

 

I got the call.

At 12.35 on Wednesday 25th September 2013 the phone rang, I was fast asleep but woke thinking it was probably my son calling to say he’d be late home or something. Instead a calm voice said “Hello, is that Mrs C D……….? This is the coordinator with Manchester Transplant services, we have a kidney for you, a 6/6 match” In the excitement that followed I could hardly take in what was being said but basically I was told to pack a bag, have something to eat, have a shower and remove all jewellery and prepare to be at Manchester Royal Infirmary (approx 50 miles away) between 5am and 7am . The last thing I was told was to go back to bed and get some sleep – ha as if I could sleep.

I phoned my son who came home and we got the bag packed and had an early breakfast of Weetabix and toast and tried not to panic. I went back to bed but didn’t sleep and after a while got up and had my shower then read until it was time to go.

Arriving at Manchester we were told that there was a slight delay with the kidney – which turned out to be a long delay. At 11pm that night a man walked past the ward with a large white coolbox and a few minutes later I was given a gown to put on ready to go to theatre. The operation started at 1.30am and I was back on the ward by 8.20am complete with my new kidney. I felt amazing, possibly because I was full of morphine and was soon sending texts to anyone I thought would be interested to tell them the good news. Reading them back I sound very cheerful …I even praised the hospital food! Over the next couple of days the morphine was reduced then stopped and the euphoria lessened as the pain kicked in. By day six I was at my lowest having started to feel very sick due to the high doses of immunosuppressive drugs and so I was sent home despite saying I really didn’t feel ready.

Once home I followed instructions as well as I could but the drugs were making me sick multiple times each day and after a few days I also developed diarrhea and became very dehydrated despite drinking lots of water. My appetite decreased as the sight or smell of food made me nauseous so by Wednesday (a week after leaving the hospital) I had to go to the local Emergency department and was admitted to our local hospital. Six litres of saline later I felt much better if a little waterlogged. The D&V had lessened although still present and on Friday afternoon I was allowed home again. After a quiet weekend I returned to clinic at the local hospital for a check-up and will resume the twice weekly clinic visits to Manchester on Wednesday.

 

Nuked and spooked.

Today was a strange day, not least because I was having a nuclear heart scan which meant more time walking on a treadmill then an injection of radioactive dye (sadly I’m not glowing in the dark) and, after a wait and a cheese sandwich, a session being scanned with a huge scanner that looked like a huge open book.  The worst part, I’m getting used to the treadmill now, was having to lie still with my arms over my head in the scanner. (The lady in the photo is bending her elbows but my arms were kept straight to enable the scanner to move up and down without crashing into them.) The more I tried to stay in one place the more I itched (another side effect of end stage renal failure is the interminable itchiness of legs, arms and hands) and although the test takes only around 30-40 minutes it felt like a lifetime. I did remember to dress warmly this time though and wore my beautiful Owling mittens to keep my hands from turning blue (thank you Julia!).

Afterwards I had an hour or two at home without the dogs – they were in daycare so I was able to have a rest and do a bit of sewing in peace before picking them up. And it was so quiet without them, it was spooky. I’m used to having two constant companions underfoot, barking at passers by, snuffling at whatever fabric I’m trying to wrestle with, asking to go into the garden just as I get to tricky bits of machining.  This afternoon without them I managed to sew both back and side seams of the Cupro blouse I’m making, sewed the sleeve seams and put the neck facing on. I was able to set up the iron and ironing table nearby without the fear of a ball chasing dog knocking it over and I listened to a chapter of an audiobook while I did the hand sewing. At one point someone posted the new copy of the Phone Book through the front door and I jumped a mile, the combination of lack of dog early warning system and the murder mystery I was listening to did my heart no good at all!

 

Mother’s Day

Yesterday was a lovely day, P was out in the morning so I pottered around getting things done, reading my new recipe book, planning the evening meal etc. In the afternoon he arrived complete with a selection of tulips in pinks and purples, a beautiful pair of silver and amber ear-rings (which I totally forgot to include when I wrote this post originally even though I was wearing them in my ears at the time!) a lovely card (when I used to be looking for Mother’s Day cards for my own Mum I could never find anything different but P manages every year to find something that appeals to me.) and the suggestion that we go for a walk together without the dogs just to enjoy the afternoon. We drove up to Scorton, well I drove – I value my sanity more then to suggest he drives on Mother’s day when the world and their dogs will be out as well as all the usual Sunday drivers, and had a lovely if cold walk through the village and along the river. He even left his phone in the car so he wouldn’t get the usual heap of calls and texts …it felt extra special to have his undivided attention. When we got back to the car there were a list of missed calls and texts so it was a good plan! We planned to go to Scorton Barn to look at the plants but were disappointed to find that they seem to have become mostly a tea and gift shop – the garden part looked very bleak and unloved. The tea room was packed so we came home and had tea and biscuits before he took the dogs out for a good run while I made our evening meal.

I treated myself to the book Truly Tasty – a book written by chefs with meal suggestions and recipes for people with kidney failure. Sounds like an oxymoron but the book contains some excellent recipes all worked out so that they can be adapted to suit the specific renal diet needed but are tasty and attractive enough to suit those on normal diets too.  All the dietary exchanges are highlighted so by eating very bland meals earlier in the day I was able to enjoy tagliatelle with poached salmon, broccoli spears and asparagus  with a dill cream sauce and a delicious blueberry sponge. My portion had only minimal amounts of salmon, broccoli and asparagus and a lot of pasta and I didn’t get many blueberries either  but it was the tastiest meal I’ve had  in quite a while. I’d have taken photos but I was too busy eating it! The book is full of imaginative ways of making a little of the phosphorus and potassium containing foods go a long way and I’m looking forward to testing a few more. It is definitely special occasion food, even with the restrictions, but makes the daily diet feel more bearable. I have nothing but praise for the chefs who took the time to work on the project and do feel that renal units should tell patients about it at the same time as giving out the daily guidelines. I’m now planning a birthday meal to enjoy with friends next month – having thought I would either have to eat something completely different or forgo the occasion.