Jasmine Stalker-Firth

Neil and I have had trouble sleeping these past two nights. This is a bad thing, because we need to be refreshed to manage all our dialysis tasks. If we are not fresh to do this, we can make errors, errors which can lead to Jasmine ending up in hospital. We live on a knife edge.

The reason for our unease is that someone close to us who wants to help has always offered unsolicited advice and often sent email. This is because this person cannot help with dialysis which is where we need help, but wants to help in anyway, now that they have finally overcome their distress and fear of Jasmine’s condition. Back in November, this person offered to pay for the storage of the umbilical cord and blood of our new baby (due in May), and asked if we had done that with Jasmine because they had been shocked that I had said on the blog that a kidney transplant only lasts 10 -15 years.

This email although well intended caused me to lose my temper. I replied:

I am astonished and extremely irritated by your email. I can’t believe that you didn’t know about the length of transplants because we have told you many many times over the last nine months. You would have also known had we stored Jasmine’s umbilical cord and blood because we would have told you.

I do wonder why I bother keeping a blog or indeed tell anybody about anything to do with Jasmine because I feel that I am talking to myself and the only person who really really listens and retains the information about our baby and doesn’t think that he is qualified to offer an opinion every two minutes is my Dad.

Our lives are difficult as it is and I really do wish you would bear that in mind before you offer us your constant stream of advice. It is highly offensive when you tell Neil how to give Jasmine her medicines or how he should feed her or when you ask how much money Neil has left in his bank account every single time we see you, as well as taking pictures of Jasmine without including us as if we don’t exist at all, which is a most hurtful thing to do on the regular basis you seem to.

We didn’t store Jasmine’s umbilical cord nor blood since it was an emergency section and we had only found out about this sort of two days prior to her birth and didn’t have time. There are only two places in London that do it and it is science fiction to think that you could grow a kidney from stem cells – the research I have read doesn’t concentrate on this sort of thing at all.

Jasmine is screaming and Neil is trying to calm her down when we are both exhausted so I will finish here and will ask you to please think before you give us anymore advice. We don’t need advice what we need is practical help and a sympathetic ear – both which are in very short supply.

I stand by what I have written. I know that it isn’t particularly warm and fuzzy and reading it now it seems harsh and pompous. I was 12 weeks pregnant at the time and we were thrilled but petrified of having a new baby, after all the heartache we have been through. I like to think that if I had received such an email I would cut me some slack.

This person’s spouse has rung me up twice – both times lasting over an hour and screamed at me down the telephone: I am ridiculous, I am spiteful, mean, and nasty. It is the most devastating thing this person has read and that I would be really embarrassed if this email was shown to anyone. So, today I am showing this email to everyone. The tirade went on until:

Me: It isn’t about you. It is about Jasmine receiving the best care Neil and I can give her.
The person: It is about us.

And shouted at us until we were physically drained and depressed..

The first time this person shouted and screamed, afterwards we had to leave our house at 1am and go down the hospital with Jasmine for an emergency. The next day I rang them up to explain where we had been and to demonstrate no hard feelings etc. A few days later we had a visitor, who trying to help, told me that I had to apologise because this bad feeling caused by the above email wouldn’t go away on its own. I didn’t.

Finally, I got a letter from the screaming person, saying that we were in a ‘muddle’ and they just wanted to help. I appreciated the gesture and wanted to move on but was having a hard time forgetting all the dreadful things this person had said about me, as things said cannot be unsaid and stay with you whether you wish it or not. To help, we had some counselling and learnt that living with a child with a chronic illness means dealing with all sorts of people and their behaviours. People want to help and be good, but stressful times don’t always bring out the best in people.

Our counsellor advised us to get some ‘closure’ on the event so that we could move forward and put our energies into caring for Jasmine. And to use our precious time in counselling discussing how we should deal with Jasmine having a transplant, particularly if Neil is a suitable donor.

So, yesterday we took the opportunity to try and explain how we felt when this person rang us. It did no good. This person shouted again (an improvement on screaming) down the telephone and said that on top of me being all the things I was before (nasty, spiteful, etc), The Family are shocked at my sending this email. When I asked which bits of the email, it soon became clear that this shouting person cannot remember what is in the email and has blocked out all of the horrible things they have said to me. Now I don’t know who The Family are but what I do feel is that I have been misrepresented, which has upset me further. So I am using this opportunity to put forward my side of the story. I also want people to see that having a chronically sick child on dialysis means that you have to deal with lots of things, not just medical problems.

It has also put an immense strain on our marriage – something that having a chronically ill child could never do. We have had blazing rows, tears, lost sleep and lots of sadness over Christmas because of this one person. And we have never ever in our whole relationship of ten years been in a phase like this. We love Jasmine more than words can express and we love and respect each other deeply.

I have not blogged about this before although the situation has upset us for two months, because I thought it would cause more damage. I am blogging about it now because I have found writing about all aspects of Jasmine’s illness here to be cathartic and after yesterday I feel no more damage can be done.

We are not coping well. I am weeping as I type this because of tiredness and because of the emotional stress this person has caused our little family here and the fact that this person has gone about misrepresenting me to others. Neil and I can cope with what we have to do each day for Jasmine. We thank God everyday that she is alive and at home with us. But at the end of each day we are exhausted and don’t have anything left to do deal with other people and their frustrations.

We have taken the step of asking this couple not to contact us again. We must protect ourselves.

Jasmine’s care and the health of our unborn child are the most important things in our lives. If airing our dirty linen in the public domain causes further upset and distress to anyone then I will take down this blog and never write online about Jasmine again.

Today is delivery day. The man has been and we have reorganised the bedroom to put all the dialysis stuff in it and the living room, since the new babywalker and baby highchair are taking up lots of room. I am lounging on the daybed and Jasmine is snoozing next me. We are having a quiet moment and later, I am going to make some cookies – they are from my Sivananda Yoga cookbook and do not contain any animal products so we can stuff our faces with them as they must be good for us.

It has been a busy week. On Wednesday, we went for the 20 weeks scan. We were trying not to get stressed about it, but we were kidding no one least of all ourselves. The lady who led us into the room asked us at what point during my last pregnancy were the problems with Jasmine’s kidneys identified. It had been the 20 weeks scan. Trying to say that made me burst into tears, at which point I gave up trying to behave like I wasn’t besides myself with worry. Everyone was very nice and got the hankies out.

The sonographer began by saying, “Let’s do the important things first.” To us that meant the kidneys, but to her there is more to a baby than a pair of kidneys, so she started with the head and worked her way down to the heart. It seemed like a very long time until we finally got to the kidneys. The sonographer said that there were two. In my pretence of being non-stressed and not worried for the last two weeks (hysterical) the scenario of only one or possibly no kidneys hadn’t even entered my mind. So it just shows you, I don’t have half the imagination I think I have when I give myself over to a good worry. So, really what is the point?

The scan was fine. The picture isn’t great because the baby was moving constantly and giving the sonographer a really hard time in getting all the measurements she needed. However, the baby appears to be healthy. There were no visible boy bits, so it seems that we are having a girl! We are thrilled. We would be thrilled if it was a boy. With Jasmine we didn’t know at all until the minute she was born that she was a girl and had called her Stanley all the way through. It is a bit strange to know already but it is lovely. We are booked in for another scan in four weeks as Jasmine’s kidneys didn’t appear damaged until 35 weeks so they are going to monitor us all the way along.

Jasmine was asleep all through the scan and woke up just in time for the receptionist to tell us that Jasmine and I look very similar – same eyes and eyebrows, apparently. Neil felt quite left out, but Jasmine has his long eyelashes and gentle nature.

Last week my urine looked and smelt a bit strange. I waited a few days as I thought it might be dehydration and then eventually I looked it up in the pregnancy book you get given when you first go to the hospital. The book said that it could be a symptom of many problems: dehydration, kidney infection, liver complaints, and UTIs, which undetected and untreated can damage the kidneys of your unborn child. When your baby has ESRF that is not something you want to read. In fact I am tempted to throw the stupid book in the bin as it tells you not to get stressed as it could stress the baby out – My Godfathers, who writes this stuff?

I got myself into a complete state and almost ran out of the door to the hospital in my pyjamas. Neil said that I couldn’t go anywhere by myself so we all went. I handed in my sample and had a big stress about it for three days. THREE DAYS. Part of me thought that if it takes three days to get the results back then obviously it isn’t urgent but then the other part of me kept imagining all sorts of nonsense.

Everything was fine, probably dehydration, but most likely hormones and the midwife told me to drink 3-4 litres a day. Now, I like to drink water and I drink a lot of it. I rarely drink anything else (well apart from tea and coffee – now limited due to my pregnant status) as most drinks are too sweet. I just like my water : fizzy and still (but none of those horrible fruit flavourings), but I have to say, I am struggling to get four litres down myself. I really am. But I obviously need it because I keep getting blinding headaches and feel parched. So there you have it! I am glad to have got that off my chest (which like the rest of me is getting rather large and I am running out of clothes including maternity ones as I am getting to be a big lass).

Anyway, Jasmine has a cough. Poor thing! I suspect her throat might be a bit sore too. She drank down all of her sytron today which is normally a big struggle and she pulls faces and gags and throws up and screams. Not today, she kept opening her mouth ready for more, probably because sytron is sweet and syrupy it eased her throat. And she is a bit whingey today – very unusual, as she is so normally easygoing. I am going to google about in a minute and see what else I could give her if that is the case. I have a sore throat too and a bit of a cough so sympathise.

Her latest thing is to blow raspberries at people on the tube. I have no idea where she got that from. And, she waves sometimes when you say ‘hi’ and ‘bye-bye’ at her but a lot of the time she waves at inanimate objects. The other day she was waving at my laptop when I was emailing Jen. This morning she was waving at her cup when I was feeding her milk – since the last time her tube went down, she doesn’t feel the need to hold it, unless she wants to push it away. And sometimes she waves at her catheter after you wrestle it out of her hand.

Her other trick is that she is good at undoing her own nappy and pulling really hard on her catheter so that the dressing actually lifts up from her tummy. So now we have to leave her dressed all the time – no more lying on the floor kicking without her nappy, it is just too dangerous. My girl is just so clever – too clever for her own good.

Today, Jasmine’s new highchair arrived, a present from her Grandparents Firth (thank you very much). She sat in it, long enough for a quick photo and then threw up all down it. So, now she is rolling about on the floor, squealing with delight. We have set it up next to our dining table so that Jasmine can see us eating more easily and hopefully, will want to join in.

With our first practice run, she enjoyed putting her feet on the dining table, but that is a start, because although, she is managing her milk quite successfully, Jasmine hasn’t wanted to eat any solids since the last time her tube went down in early November. She will only eat the occasional marmite rice cake – normally when she feels a bit sick (know how that feels) and she will lick the chocolate off a cadbury’s animal biscuit. And sometimes she will eat a spoonful of the creamy cheese sauce off a nice quorn lasagne.

I am hoping that sitting next to us watching us eat will make her want to join in, as she will be the same height and strapped in safely. Balancing her on the table in her bumbo wasn’t really ideal and didn’t make her want to eat carrots and roast potatoes when we were, as she was too busy trying to lean down and touch things on the table.

Our other project – the babywalker – is going really well. She now takes the weight of her body onto her feet and has started to stand in our laps when we hold her up. Previously, Jasmine thought her feet were just for chewing, and is delighted to find out that they are multi-functional. As are we!

We have had a lovely time and can’t believe that tomorrow is 12th Night and all our decorations will come down. In one way it is good as we are running short of dialysis fluid as the Christmas tree is sitting on two boxes of dialysate wrapped in Christmas paper.

Christmas Day was lovely. We had a late start, as Christmas Eve Jasmine had been really vomiting and we had changed the cot twice and our bed once and Jasmine herself so many times and we finally got to bed late and Jasmine was awake in the night and didn’t settle very easily. So on all the photos of us on Christmas Day Jasmine looks all nice and fresh and Neil and I look like we can’t keep our eyes open. Jasmine got lots and lots of clothes and bibs, which was brilliant as she has grown quite a bit without us realising, so we have put a lot of small things away for the new baby and made space for all her new big girl clothes. She also got some great toys too. Thank you, everyone.

On Monday we went to clinic and she has put on a little bit of weight so she is now around 6.4kgs (dry weight). Her head circumference has gone up 0.7cms which was great as it hadn’t been growing and was starting to be a bit of a worry. And she has grown a centimetre in length (now 67cms) which is brilliant too.

On New Year’s Eve we were really exhausted as we had had another bad day and night with Jasmine – with constant vomiting and changing clothes and bedclothes and everything all day and decided that we would just go to bed and not wait up for the New Year. However, being a northern woman I just couldn’t fall asleep. So, at 11.45pm I put the clock on my stomach and kept checking it, then we had this conversation every couple of minutes:

Me:”Are you asleep?”
Neil: “Not with you asking me every two minutes.”
Me:”Do you think we should get up and let the New Year in?”
Neil: “No.”
Me: “Ok.”
Silence, then:
Me:”Are you asleep?”
Neil: “Not with you asking me every two minutes.”
etc…
Neil is a very patient man.

Finally, at 11.57 I got up and said that I was letting the New Year in because traditionally if you don’t let the New Year in then you can’t go out until someone comes round to your house. And I didn’t want to sit in the flat until Easter. So, Neil gave up pretending to be asleep and we got ready.

Traditionally, the person who lets the New Year in is a dark-haired male (we had a small round dark-haired lady in her pyjamas with rather large stomach), he takes with him coal (I had matches), and salt (I never bothered), some people take bread too and an unopened bottle, especially if they are going round someone else’s house to let the New Year in.

So, I stood in the hallway until it was midnight (I had the timer with me as we discovered that none of our clocks tells the same time) and then as soon as my timer went off, I let the New Year in as it was freezing in the hallway and Neil hadn’t yet arrived to open the door. He came running over and said, “Oh let yourself in did you?” (which was a bit rich since he didn’t want to get out of bed and do it. I don’t think you are supposed to, but really it was below zero – even in fluffy bedsocks).

So, we wished each other a Happy New Year and Neil gave me, the person who has let the New Year in as tradition demands, some silver (20p – I asked him if times were hard, he told me not to be cheeky) then I carried on through the flat and let the Old Year out through the balcony door (you can’t sit down until this is done as it is bad luck) and then I cut a fresh cake (a mini-mince pie as we hadn’t got our New Year’s cake organised) and opened a fresh bottle (there was a toss up between some left over cava from the summer and a bottle of beer, the cava won), so that we could toast 2009.

After all that festiveness, we made a nice pot of tea and got back into bed. Jasmine slept through all of this of course! And Neil soon went to sleep, glad that this northern madness which he didn’t sign up for, was over for another year. I sat in the dark drinking my tea and thinking about 2008 and was off my head with joy that Jasmine was asleep next to us – even if that did mean she would wake up, raring to go at 6am!

Today, I have been off my head with joy again as we bought Jasmine a babywalker. I was so excited and couldn’t wait to get home and set it up. Jasmine is doing really well sitting up and can roll a bit and she can wave and stuff, but she has no desire to sit herself up or stand up or anything. So, we are hoping that the babywalker will encourage her to use her legs and stand up. She will remain a few months behind other babies development-wise until she gets a transplant.

So far, so good. She was standing in it and liked the activity music centre on the front and was very happy to be upright and potentially mobile. It was good to feed her milk in as well as it is very tidy because she can vomit all over the table on the front and not over herself. Fantastic!

Now she has flaked out on the floor and we are psyching ourselves up for the usual round of exit site dressing change, setting the machine up, observations, and plugging her in. Things don’t stop even during the holiday season. Neil gave Jasmine her epo injection on New Year’s Day. Poor thing!

So, here’s wishing everyone all the best for 2009. Happy New Year!

I have been feeling so ill. I didn’t realise how ill I felt until today when I woke up and felt a bit better. That didn’t last long as I had to go to the hospital to get some bloods done, but it was great as there wasn’t much of a queue so I was soon home and back on the settee.

Neil has been a total star (as always) and took over dialysis duties when I couldn’t even stay awake and had to go to bed. And I had to miss out on meeting Barbara and Andy for pre-Christmas drinks which was sad. Being pregnant, there wasn’t much I could take to help myself get better so I have been drinking hot lemonade which I just thought was a nice drink my mum gave us when we were little and ill but it really works. I have also being doing lots of neti which makes a big difference, even if it isn’t very attractive (here is that neti video demo again because it makes me laugh).

Jasmine has had a cough too, following the bug she had last week, but she has kept on drinking her milk and chewing on things and just coughed now and again. She hasn’t complained about it so I am hoping it hasn’t felt too bad for her. She has been sleeping a bit more than usual and hasn’t been eating many solids. But she has been her usual smiley, singing self, which is just lovely. Apparently, it is ‘normal’ that her appetite comes and goes in the same way that her desire to drink her milk does.

So, we are just about ready for Christmas. Tomorrow we have to go and buy Neil some turkey – my quorn roast is in the freezer – and more parsnips since we ate all the other ones. And then we will ice the Christmas Cake.

I thought about putting up a festive picture of my red nose – but I didn’t really look like Rudolph so I decided on the extra cute photo of Jasmine and all her presents.

Jasmine and I (well mainly Jasmine) have invented a new game together. When I sing, ‘If you are happy and you know it clap your hands’, Jasmine squeals and holds my hands and then she leans forward and puts her face in my hands, and then I shout, ‘Bus driver’ (as in ‘Bus driver, open the doors’) and she laughs and then we do that over and over and over until Neil wants a go.

Today we went as a family to have some counselling down at GOSH. It was very good and we came away feeling much better. Most of the time, things feel manageable. However, some days we get a bit down with everything we have to do and the fact that we are here, the two of us, doing it alone.

It was lovely to talk to someone about all the stresses of having a chronically ill baby and how we are learning to cope with all the various things it entails. And it was great that there is someone paid to listen to us so that we don’t have to feel guilty about permanently bending my Dad’s ear or using up the precious time of the lovely GOSH nurses.

So! Counselling was good. We will be going back again and I would recommend it to anyone who feels like they are having a bit of a tough time.

Jasmine has been having a couple of rough days. She had a temperature of 38.6c the other night, but it came down after an hour. It wasn’t like the time recently when she had the scary rash and breathing difficulties, so we were quite relieved we didn’t have to rush down to the hospital, but we did have an hour of so of trying not to worry even though her fluid was clear and she wasn’t in pain (signs of peritonitis – the thing we check for morning and night).

But, even though the temperature came down, she did go on to spend two days vomiting really badly and having terribly smelly nappies. We think the worst of whatever bug she had is over as she is back to her smiley self and was jumping up and down with excitement this morning, as normal. Her two front teeth are nearly through now, and I still get a surprise each time she smiles at me with these big gnashers. They look great. She looks great. Neil is great too (in case he feels left out).

Jasmine is really into marmite breadsticks as they are good for chewing and ideal for her little fingers to hold onto and they are really tasty!

Today, we had a mini-Christmas day with Grandma Stalker. We had turkey (mine was quorn turkey) with all the trimmings followed by Christmas pudding.

Jasmine seemed bemused by the whole event. She didn’t mind the crackers and enjoyed the snapping-crack noise. Surprisingly enough though, she hated the party hats and cried when we put them on, apart Grandma Stalker’s hat which no one could see because of her hair (and she has just told me that I am very cheeky for typing that). Jasmine never cries at anything ever so it was really strange to see cry over a party hat.

Jasmine has been receiving lots of presents and cards through the post – she has more than us. We have put them all under the tree and are getting very excited about Christmas Day. She also got a pre-Christmas lovely new outfit from Sally and John (thank you very much) and one from her Grandma.

Jasmine has not taken eyes off her Grandma since she arrived. She is amazed by her and likes to sit near her so she can stare at her without any obstructions. We have had a lovely relaxing weekend with Grandma and will be sad to put her on the train tomorrow.

Yesterday morning, we got up bright and breezy and went down to GOSH to get a line change on Jasmine’s tenckhoff catheter. Her new one is in the picture above. The part which is surgically inserted inside her peritoneum is nice and soft and helps keep her exit site (the bit which sticks out of her tummy) clean, as harder tubes can cause the skin around it to fray and become sore. However, the other end where the tube sits on the connector (white tube and blue and white cartridge in picture) which we plug into the dialysis machine has now worn away three times, so yesterday our nurse clinician said that she would try a titanium connector (silver bit at top of picture). Each time the line needs changing they have to snip a good inch off the tube which you really notice when you come to plug Jasmine in on a night.

I like the new look, the only downside is that I can’t constantly check for frays as the actual connection is shielded. However, our nurse clinician and I think that could be a good thing as I was getting a bit obsessive. So, we will see how we get on as it was a bit of squeeze getting the line onto the new connector (there are so few makers of baby-specific PD catheters that getting everything to fit together and without any glitches is something everyone is still figuring out) and just to be absolutely certain because our nurse clinician is fantastic and thinks of, and anticipates, everything, Jasmine’s bags had antibiotics in them last night. It does feel psychologically a bit more robust, and apparently it is good for when children are a bit older and love to tug on the catheter. Jasmine has started doing this already and sometimes will put her hands down her babygro or trousers and fish the catheter out so that she can chew on it.

This animation about how peritoneal dialysis works is the best thing I have ever see on the internet about PD so I putting the link in again here: http://www.kidneypatientguide.org.uk/site/pdanim.php.

Last night we put our Christmas tree and decorations up as Grandma Stalker is coming today for the weekend, so we thought we would start early. We are very excited! Jasmine is only remotely interested in the tree and that is only when you point it out to her.

Her NG is out again for the moment as she kept pulling it out and she is drinking fine from her cup, but the moment she flags again she will get the tube back down. I have stopped fretting about whether the NG should be in or out as her weight gain is slow either way, which is ‘normal’.

Jasmine is a delightful little person and I am thrilled to spend everyday with her. She has her two top teeth coming through together and she has put on a bit of weight – 6.3kgs/13.9lbs is probably her dry weight (that is her weight without the fluid that she has in her peritoneum to dialyse her during the day). So, her teeth total is now four! What a big girl. The other day when we were playing clap-handies, she got hold of my hands and put them together and shouted, “Ap.” I was besides myself with excitment.

Jasmine’s cousin, Hannah, will be three years old tomorrow, so the other day Neil and Jasmine went to post her card and present. Jasmine realised the importance of this task and held onto the card all the way to the postbox. She is so clever.

Yesterday, was delivery day. Baxter (dialysis people), as usual, were really good, except the man’s trolley broke so he was a bit sweaty by the time he had delivered all the boxes of fluid and the rest of it. Fresenius (food pump people) were, as usual, totally rubbish and amaze me with their total inability to do something as simple as delivering one box of giving sets. I rang them up to give them a piece of my mind but Neil wrestled the phone out of my hand. Finally, the delivery turned up at 4pm in the afternoon whilst we were out. Neil took us all for a walk to the doctors and the chemist so that I wouldn’t strangle the delivery person.

When we got back, I reviewed the Fresenius food pump and even suggested improvements at no charge. It normally costs companies a lot of money for my professional services, but this food pump is so bad, it needs all the help it can get.

Things have been plodding on as usual – which is nice as that means we are not at the hospital. Jasmine has been vomiting loads, and either pulling out her NG or sicking it up. She only wimpers now when we stick it back down her nose. But she is so quick at pulling it out, I am always torn between being impressed and annoyed. We have been doing the machine and the dressing and injecting her and going to the chemist for all the medicines she needs as usual.

It was quite funny, as I was telling everyone down the hospital that it only takes me 12 minutes to do the machine. But pride comes before a fall. When I got home that day I was so tired I kept touching the walls and doing things in the wrong order, so it took me at least 50 minutes to set up the machine and my dressing change wasn’t half as neat as normal. We didn’t sit down to dinner until 8.30pm (dialysis duties always kick off at 6pm). Even getting Jasmine on her machine took me longer than usual. Neil said that it served me right for showing off. Too true!

When we went to GOSH the other day there were loads of press outside following the progress of the conjoined twins. My heart aches for their parents and I am so very sorry for their loss. We know exactly how it feels to sit in NICU and be told that your child might not live. We are holding them in our thoughts and praying for good news.

We have been to the hospital for three days in a row, so we are having an easy day today and collecting our thoughts.

On Monday we went to clinics and Jasmine got measured and weighed, and had her bloods done. Jasmine is looking good, but struggling to get enough calories and nutrients to grow well. Her length is good (65.4cms) but her head circumferance and weight (6.1kgs) are a bit of a worry. She is really good at sitting up and looking about. We are increasing her feeds again and going back on Domperidone, which is supposed to push her food through her digestion a bit quicker and prevent vomiting, for the week. There isn’t much evidence that it works, but we are going to try it out as she has been vomiting a lot lately. Last time when she was on it, she kept sticking her tongue out and her eyelids were drooping and eventually, she had to go for a brain scan to check that it wasn’t anything sinister. This time we will see whether she ends up sticking her tongue out all the time, and if the Domperidone actually helps.

We discussed transplants and are starting to get into the details of tissue typing. Ruth got a bit weepy and everyone was really nice and talked to us for a good while.

When Jasmine gets a transplant, if all goes well, she will probably be in hospital for two weeks. Then we will have to take her for blood tests every day for a further month. Of course the fact that she is very small and sensitive means that things change and she could be in and out of hospital a lot. She will still need to take a number of medications. We now have plenty of leaflets which is good as it gets us used to the idea. Previously we were having trouble getting past the statistic that on average you are 4000 times more likely to die on the table than win the lottery. However, there are lots of safety tests and so far a live kidney donor has not been lost in the UK. 5% of transplants fail in the first year, but then the failure rate tails off. A cadaver kidney may last 10 years on average, while a live donor kidney may last 20 years with present technology.

Currently, I am the correct blood group and we are waiting on tissue type testing results. If I can donate a kidney then I would be in a different hospital (the other end of town to Jasmine) for about five days, then need about six weeks to recover. As we are going to have a new baby as well, we could be rather busy, and more than a little stressed!

On Tuesday, Ruth and Jasmine went to UCH so that Ruth could speak to a consultant about her pregnancy. Everything seems to be in order and the consultant was positive about the chances that we will have a trouble free pregnancy and hopefully a natural delivery, if this new baby’s kidneys develop ok.

On Wednesday, Jasmine was assessed by urodynamics to start thinking about what operations to do post-transplant to sort out Jasmine’s plumbing. We met a lovely nurse there who talked through all the possibilities and really cheered us up. After that we wandered around the wards catching up with people in the different units we are involved with. It was lovely to see everyone and not be there for treatment.

Jasmine’s new titanium catheter hasn’t arrived yet, so we will make another trip back to GOSH to change that when it does. The soft line and double cuff for the tenckhoff catheter have helped keep the exit site clean, but the wearing at the other end is a bit of a worry.

We have got a lovely new daybed, which is very comfy. Now whoever is not on dialysis duty can get a good night’s sleep, and Ruth won’t have to lie on the very uncomfortable camp bed when nine months pregnant. Whenever we have a minute we can now go for a lie down.