Kat R's Parents/Guardians

N/A

Kat R's Siblings

Kat R's Interests

Bandana's+hats, Lush coconut, photo frames, hourglasses, music, beads, stars, rainbows, ducks, things with the word Hope Dream Wish, simple crafts that can be done in bed (cards, toppers, stickers etc), Tigger, Kittens, Jellycat and Harry Potter

Kat R's Favourite Colour

Red and Purple

Is Kat R able to read?

Yes

Is Kat R able to use hands?

Yes

Is Kat R visually/hearing impaired?

No

Does Kat R suffer from any developmental delay?

No

Kat is a member of the Post Pal team, when she collapsed in July 04, I (Viks) put her up as a pal with the intention of the page being up a week or two, how ever she is still in hospital and has been unable to return to the team, so until the day comes when she can she is a pal.

NB: No Post Pal funds or resources are spent on Kat because she falls outside of our requirements of age (over 18)

Story written 2004

Kat's given me permission to put a little detail down to give you a clearer picture.

Kat's a poorly kitten, who has battled so many serious conditions over the past 11 years, and has spent a lot of time in and out of hospital. She had a week of very bad vomiting, and her carer (she has carers come in from social services every day to help) found her unconscious on the floor back in July. They called an ambulance, and several hours later she was declared as stable and moved out of resus. She spent a week and half in hospital, on drips for 24 hours a day, and NG feeds (feeding through a tube in her nose) for 20 hours a day. She went home but within days collapsed and was rushed back in, a few days later crashed, but again they managed to stabilise her.

Update 12th February 2007

Very long time no update, I didn't know it had been so long! Kat remained in hospital, and was let out in November. She had Christmas day at home, although part of the day was spent at hospital due to abscesses that she have developed - which have left lovely leaking holes in her legs! Thank you to everyone who sent Kat a card for her birthday, she would love to thank you all, so if you sent something please email her at kat@postpals.co.uk with the subject "Thank you".

Update 27th July 2006

Kat is having a PEG put in under a general today, she will have it extended to a PEGJ at a later date.

Update 27th July 2006

Hormone results are back in and are worse than last year. They haven't scanned so don't know if its tumour growth but I can't see what else would cause that. They are going to give her oral steroids (instead of IM) for a day and do a 24 hour urine collection to see how much makes it through her system, as she needs good steroid levels to cope with infection when the PEGJ goes in (which is the current plan).

Update 25th July 2006

Kat had hormone tests today (which were scheduled for today anyway), most of the results aren't in except steroids which are very low, no surprise seeing as she was admitted with a steroid crisis (not the technical term!) and dehydration. Treatment options at the moment are having a central line back in and replacing and moving it to different vessels once a week and hope it doesn't get infected again, or have a PEGJ put in and hope it doesn't get infected again. She just doesn't have any veins left.

Update 24th July 2006

Long time no update. Kat was admitted to hospital in the early hours of the morning.

Update 22nd February 2006

Kat's currently at home.

Update 23rd January 2006

A lot has happened in Kitten world, sorry for not updating. Her sugar levels have been all over the place so she was on constant insulin and dextrose infusions. Her central line got infected and for a while she refused to have it out despite if it had stayed in it would of killed her- she passed the psychiatric tests as she is able to make medical decisions. How ever after her birthday she consented to have it removed, and has consented for the PEGJ to go back in, they are going to do it under a general and in one go this time rather than in two goes.

Update 16th December 2005

Kat went down to theatre today and had the PEG removed, everything is still infected but the line in her neck is holding up. She started TPN which will be running 24/7 for a min of 2 weeks, she isn't going to be given day release on Christmas day.

Update 15th December 2005

When will things end for Kat :( Today she had the extension from the PEGJ removed (the bit which goes into her intestine) when it was pulled tons of puss and blood came out. She is going back to have surgery tomorrow to have the PEG part removed (1 week 4 days after it went in). To make matters worse the central line isn't working well so they are NOW sayings he might have a Hickman put in, why they didn’t do that earlier in the week instead of putting her through another op. It’s looking very unlikely she will make it home for Christmas or get day release. Needless to say when ever I’ve heard from her she’s been in tears :(

Update 12th December 2005

Very briefly spoke to Kat's mum. She was taken down to surgery last night to have the Hickman put in (in her chest) but ended up putting a line into her neck (between her neck and chin) and started the antibiotics. Her temp has come down and she's less glassy eyed. They want to do another endoscopy (how many is that in the past month?) and check on the PEG and see how things are as Kat said the first feed didn't hurt but the second did. They are also talking of starting her off one TPN for a while.

Update 11th December 2005 21.12 pm

Spoken to Kat who’s waiting for an emergency theatre slot to come up, so she will have surgery some time tonight, she's not had fluids or steroids for over a day and her body's not going to be able to fight this off without them or the antibiotics. Her temp is still going up. They have put some antibiotics through the PEGJ which just hurt like anything, they are keeping her dosed up on morphine but it’s only helping for an hour or so after each dose. The line will be put in under a local (which was horrid enough the first time).

Update 11th December 2005

Kat's PEGJ is infected, it was getting more painful rather than easing and she's not been feeling well. She is going is going to have the Hickman put back in as they need IV access to treat this infection. She would of preferred a Hickman to having the PEG done in the first place but they wouldn't put it in as they didn't think she was strong enough to fight off septicaemia again if it should happen, so they went ahead and did the PEG on Monday and extended to a PEGJ on Friday, now come Sunday its infected... Not sure when they are putting the Hickman in, will keep you updated.

Update 9th December 2005

She had the PEG extended to a PEGJ today (with no sedation, eek), said it hurt like hell. Hopefully things will start to improve pain wise now, they are going to try and start up feeds next week but slowly over 20 hour periods.

Update 8th December 2005 (Later in the day)

I've spoken to her this afternoon, she’s in a lot of pain despite the phenytanol, IV morphone and IV tramadol, and is finding getting to the toilet near impossible due to that in her stomach which hurts, a drip going into her the back of her calf muscle (OW), her foot covered in bandages as they did various cut downs on her foot trying to get IV access and an arm in plaster!

Update 8th December 2005

Finally have some Kat news, surgery went ok but she’s in pain and it hurts to move, she’s still on IV morphine (on top of usual phyntanol (badly spelt i know!), she sent a picture of her tummy.

Update 2nd December 2005

Text from Kat:

I’m going to be fed via PEGJ for life, my stomach won't recover; my small bowel is enlarged, possibly from old tumour. Op's next week, pacemaker still option but won't do much.

Update 26th November 2005

Kat's arm is broken!

Update 24th November 2005

The latest, london (royal free hospital) are saying they will accept her if she can be nutritionally stable, they want her to have an NJ tube put in (goes down further than an NG), as if she can't tolerate that then the pacemaker is unlikely to work. The thing is not only does this need to work for her, they want her to tolerate 100mls an hour for 20 hours a day - last year she wasn't able to keep 10mls down or a 30ml flush with an NG and not much has changed since then so they aren't confident it will work, apparently the NJ tubes are only slightly looped around so she might still throw it up. Anyway the plan is they give her another GA (the last one which was a "day case" yet she’s still in hospital 2 weeks later - or is it 3? I'm loosing track) and put the NJ in via endoscope again, then start up the feedings which she will have to tolerate for one week minimum hopefully (their word!) 2, and if it works she will be transferred up to london. If it doesn't... we are back to square one.

Update 11th November 2005

I’m being kept in the weekend now sure where I move to as shortstay shuts Friday. 6 attempts to canulate, now in my foot. Dr M away until Monday. 

Kat had been asked to go to the hospital on Sunday (for a nice change not as a patient!) but to do the honours of drawing the hospital radio raffle :-) So now she is in hopefully she can go ahead and do so.

I forgot to mention when she was admitted she was first taken down to theatre to have her stomach and back covered in various electrodes, and then swallow a Capsule endoscopy (only over £30K disposable camera!) and then be taken up to the ward (it will take 2 pictures a second for 8 hours), later she will go down to theatre again, be given a GA then have injections into her stomach (as in going down her throat to inject the stomach rather than from the outside) with botox with the theory it can help gastroparsies and also might shove the camera through a bit if its still in her stomach. Then she will be woken up while pictures carry on being taken. A long day ahead!

Update 10th November 2005

Wednesday went ok but i'm not well so have been kept in and am still not good so i'm staying in again in a sideroom. Love Kat

Update 5th November 2005

Kat's still at home, having the usual appointments here, there and everywhere. On the 9th she will be admitted for an endoscope under a general, where they will inject her stomach with botox. They did this before under sedation and pethadine but she came around too quickly and was fighting it so they weren't sure if they got the 4th injection in properly. General Anaesthetics don't agree with Kat's body, so fingers crossed it goes well and she can go home quickly.

Update 15th October 2005

Sorry Kat's page hasn't been updated, its hard to keep up, since I last updated Kat's been discharged, readmitted, discharged, nearly re-admitted, been to another hospital with an unrelated problem, and had more appointments that I can keep track of!  She is currently at home, and due to starting subcutaneous fluids at home, hopefully to prevent another admission- in theory! She was called into MAU earlier in the week and told to bring a bag (she went but didn't take a bag), apparently she is getting worse with regards to her blood counts. She has been diagnosed with Gastroparesis and had 4 botox injections into her stomach (via an endoscope), this hasn't made any difference, and they are thinking of repeating it as by the 4th she was fighting the sedation too much so they aren’t sure if it went in properly. If it’s repeated, it will be done under a general.

Update 11th September 2005

The ultrasound of the "enlarged mass" shows "thickening"- don't know what I mean by that? Nor do I! But they don't seem worried by it, which has got to be a good thing :)

Thank you to those who have written or emailed to requested a song on the radio.

Update 11th August 2005

Sorry for not updating for so long! 

I spoke to Kat last night, so for a catch up.

The CT of the bowel was clear but showed up an "enlarged mass" on the side of the ovary or where the ovary should be (not sure which side), tumour markers for a recurrence of a Teratoma. Not sure if she's had the ultrasound on it yet.

The gastric emptying tests which were scheduled for September were brought forward and she was taken down for them, only to be asked to drink milk (she's on a dairy free diet), then as she couldn't do that, to eat readybreak (full of gluten and probably milk too!), so it was decided the test couldn't be done. However, this week she's been told it may go ahead.

There is also talk of having her swallow a tiny camera which will take pictures over a course of 8 hours, if she throws it up it will be placed using a endoscope and while they are doing that will go ahead and do the botox injection in her stomach. These are still maybes.

She's still having fluids subcutaneously and doesn't have a PEJ in... this is where a big problem is at. She does not want to have a PEJ and is not planning on letting them put one in, I think it’s going to turn into a battle of wills.  She wants to stop being sick.

She's been very low and feeling cut off too, however when I spoke to her last night she was brighter, I had been trying to find 44 (her favourite number) people to request a song on hospital radio for her, how ever 121 people had!!! I hadn't even got around to requesting one myself so I'm sure that number will have gone up a little since then! They are going to be running over the next few days, which will hopefully help her mood :) A HUGE thank you to everyone who requested a song. If you didn't (or if you would like to request another at any point) it’s not to late, the link is here.

Update 25th June 2005

Kat and I talked overnight for quite a while (in between silences when a nurse came in or a patient stirred).

The case conference was yesterday, Kat wasn't invited (which she didn't know) and neither was carol (prof pinchings OT), Carol came and woke Kat up and sat with her during the conference which was sweet of her.

The endocrine team are happy with the diagnosis of prolatanoma (excuse my spelling), and the hormone treatments she's being prescribed so that's one less thing to have to be mucked around with.

The long and short of it is its going to be a long week of tests, they were talking about doing a radio isotope scan (hope i got that right), but not sure what that’s looking for or whether that’s going ahead. They want to do a barrium meal (dont think they are looking at upper GI as they were talking about doing it with an NG) but they want to look at the stomach and small bowel. Kat's NOT wanting an NG at all, but I'm doubtful she will manage to swallow and keep down the barrium long enough but we'll see. She is also scheduled for a CT either on monday or at the latest tuesday, which is worrying that they want her in on monday (decided late friday) instead of making her wait ages like they often do.

They are wanting to check for any tumours... a small bowel obstruction/blockage (not a complete blockage) and also for chrones disease. None of which (especially tumours) we want to show up, however would be good if they find something treatable.

No matter what the outcome of these tests, towards the end of the week she is having a PEJ placed. They will do it under a general, which is good and bad. After having a Hickman done under just a local with no sedation I’m glad she’s allowed to sleep this one through, but on the other hand her and generals don’t get on well. She’s unhappy about the pej going in, she doesn't want to be fed into her intestine she wants to be able to eat and not be sick. The feeds will go in over a 20 hour period probably.

They said they aren't putting in another Hickman at the moment because of the infection risk (they don't want her getting septicaemia again or any other infection) but if she gets a UTI, kidney or chest infection then they will as they don't think her body will cope with it due to the prolatoma (neither of us understand that bit as she's had kidney infections since it was diagnosed).

In a nut shell, a horrible week for Kat, and a nerve wracking (understatement) week for us all too. I don't know when test results will be due.

Update 19th June 2005

Kat has been in hospital the past few weeks, the midline was taken out shortly after it went in, they are now thinking of putting another Hickman in but are worried "as it nearly killed her last time", they are also thinking of putting in a PEG. A case conference is going to be held, until then Kat's getting fluids subcutaneously (which she finds very uncomfortable). No idea of when she will be allowed home.

Update 12th May 2005

It turned out Kat had Septicaemia and went into Septic shock. Her Hickman was removed, and a midline was placed but it is going to come out and another Hickman in. After a week she discharged herself from hospital but has been re-admitted.

Update 3rd May 2005

Two days ago Kat suddenly had very sharp pains around her Hickman line and was struggling to catch her breath. She also felt she was coming down with something. Her hands have blown up but a different area to before. She rang me at 4.30am, but I don’t remember what we spoke about. She was rushed into hospital in an ambulance, her temp is at 39.9 C, I don’t know any more details. The worry is it’s a line infection which would mean it needs to be removed, or blood clots causing the swelling, again related to the line.

Update 26th March 2005

Just spoken to Kat (I hadn’t heard from her since Tuesday I think it was). She is feeling really rough, hasn’t managed to keep any food down the past week (she had already lost a stone and half within a month of coming out of hospital). When she last looked at her line because it was sore, it was puss-y and bleeding slightly. For the past week and half she hasn’t been able to get even slightly warm despite being under a 20 tog duvet and several blankets- she tried going out today in case it was warmer outside but made her feel awful. She’s been waking up drenched in sweat and has had a fever. She feels she is heading back to square one where she was 10 months ago.

Update 20th February 2005

I spoke too soon. It's suspect that Kat has blood clots in her arm, related to her Hickman line, as her doctor is off sick she has been treated twice a day at her local hospital, and will be going into her normal hospital tomorrow for more tests.

Update 7th February 2005

Kat has now been home for two weeks, she is over the age limit for Post Pals but was put up for her hospital stay, therefore we are now putting her onto the “Moving On” page.

Thank you to all those who took the time to write to her.

Update 9th January 2005

Kat was allowed home for a couple of days over Christmas, which didn’t turn out too well but was nice for her to be out of hospital for a tiny bit. An MRSA patient needed her side room so she has been moved out into the main bay which she is finding hard. Other than that there is no real health news. Her birthday is on the 16th of Jan, which she will be in hospital for; if you would like to request a song for her birthday then please click here

Update 22nd December 2004

Tumour markers and scan- NEGATIVE
MRI of the tumour- NO CHANGE
:)

Update 13th December 2004

We have a famous kitten on our hands! Today she had a film crew in, and official photographs done, look out for Kat on Spotlight (BBC)

Update 9th December 2004

They are testing for tumour markers and scanning...

Update 16th November 2004

Last week Kat spent 2 and half hours in surgery, having cutdowns in an attempt to get a midline/picc line in. She only had a local and said it was painful and frightening. This week she spent another hour and half in surgery and had a Hickman line fitted, which she had called Faluline. Again, she only had a local and said although it wasn't painful she found it very scary. At least this should mean no more venflons in her feet, or blood tests done from her knuckles.

Update 6th November 2004

It was decided that Kat was to have an NG tube for fluids- to try and stop her throwing this one up they put 3 weights on. Within 100mls of fluid going in, she was vomiting and brought the tube up, started choking, so it was decided to take it out. However due to the weights on the end, it got lodged in her nose. 2 hours, 2 nurses, 1 doctor and 1 surgeon later it was finally removed, however understandably she was left very distressed. She has had lots of Ng tubes over the years- even fitting and removing her own, how ever she has never had one as painful as this. Her mood is very low, and could do with lots of TLC.

Update 5th November 2004

Kat's doctors had a case conference, not a lot has come out of it. They feel when she is finally allowed to go home, it's unlikely she will remain so for long, so they have arranged that in the future when she is admitted she will have a long term bed on the short stay unit, so she remains under the case of the same doctors. No news of a discharge date, I'm hoping it's before Christmas, but who knows…

She has had an NG tube (tube which goes up the nose and down into the stomach) fitted for fluids and is likely to start on feeds. This time they have used a weighted tube, as last time they had to take it out as she kept throwing the tube up and choking on it. She is upset about having such a visible thing in.

Kat is back on IV Iron due to her HB being at 8 (should be above 11). She is having a lot of palpitations, with her heart rate going from tackycardic to bradycardic (too fast and too slow), she is also spiking temperatures on and off and her oxygen levels are up and down.

Update 1st November 2004

She's not having the best time of it at the moment, today they yet again had to do a blood test, but her veins are so bad they have to put the needle in the tiny vein by your knuckle and they hit the bone-twice! She was also having fluids via a subcut which was really hurting her and she's covered in sore lumps from where she's had the infusions.

Update 31st October 2004

Her Doctors are holding a case conference soon, to discuss where to go from here, with the possibility of transferring her "up country" for another opinion. Not sure when she's going to be allowed home, but they have said so themselves that when ever she is discharged they don't see her being able to stay at home for long before being re-admitted :( She is starting to get extremely down, one minute is ok, and the next feels she can no longer go on. She has caught a bug this week, but on the up side her speech is less slurred. They are bringing her scan forwards to check for tumour growth. She has had a bad day today, she first tried to get up to get to her door and tripped over the cable to her subcut (she had joked the night before they had given her so much cable she could skip with it). The staff got her up into a chair where she passed out, so they tried to get her into the bed where upon she had a seizure.

Update 26th October 2004

Kat saw a new consultant last week-her 9th in 2 weeks; he spent 3 hours reading through her records before going to see her. He was very nice and is going to be sitting in on her case conference, for the first time since June after he saw her; she was moved into a side room. She says compared to being in the bay it's like a luxurious hotel and she can have the lights off, no movement etc. Things still aren't easy for her, moving around is very difficult, she often has IV's going into her feet (as her veins are too bad else where) which is very sore for her and the subcut going into her stomach or arms. She has to start back on IV iron, which she has a reaction to and makes her feel very ill, but she needs it. She's feeling more alone and cut off than ever, so any contact would be very much appreciated I think.

Its Kat's birthday in June, I am trying to organise 2 things for it. You can either do a cross stitch on a cat theme which someone has kindly offered to make into a quilt, or you write to some of Kats favourite celebrities and ask for a signed photograph which I will put into an album for her. If you would like to take part please email viks@postpals.co.uk

Update 16th October 2004

Kat is still in hospital, she is still having problems with vomiting and has been struggling to maintain her sats (oxygen levels). Her mum is on a different ward recovering from her surgery, so it’s been a stressful time for Kat. She is allowed off the ward for brief periods to visit her mum.

The doctors told her today they have no idea what to do, as they feel they have done everything they can for her, but she feels there must be things that can be done to see an improvement in her condition. Right now she doesn’t want a miracle cure, all she wants is to feel a little bit better and be allowed to go home. I think she’s spent about 25 days at home in the past 4 or 5 months.

She has medications via a venflon however her veins are so bad, it often takes 12-14 attempts plus to get one in and she’s ended up with them in her feet. Her body has been collecting fluids in various places; her hands are swollen and making life harder. The other day she was trying to have a wash, but had a bag of fluid hooked up to an IV in her foot, a subcut in her arm hooked up to a syringe driver; the cable of which was too short to reach the floor but it was too big to sit on the chair and then her wheelchair got rolled over the IV cable, blood shot up it freaking her slightly.

There’s no indication of when she will be allowed to go home.

Update 6th October 2004

After over 2 months in hospital, she was sent home and managed to stay at home for 20 days, but has been re-admitted. Doctor called an ambulance for her. She's been getting worse, is dehydrated, lost a couple of stone in weight in under a week from throwing up so much and needs to be admitted. She's upset at having to go back in understandably.

Update 21st September 2004

Kat turned out not to have Addisions, but a mass on the pituitary gland. She is now out of the hospital, but still connected to a pump 24/7 (via a subcut) and has a nurse visit daily to change it and give injections.

She could still do with some support via Posty, she has not been up to returning to Post Pal work yet, but hopes to in the near future. She would like to say thank you to those who took the time to write and to Matty and his family for visiting.

Update August 2004

Fast forward a month, and she has now been told she will be in at the very least another month. Tomorrow she is having a PICC line placed - something she has battled against for ages (she decided after having her last central line removed she wasn’t having any more and has been pretty stubborn about it!). She’s in a lot of pain (despite being on morphine) and is still being sick which doesn’t at the moment seem to be able to be controlled even with very strong IV anti emetics.

Due to the nature of ME (along side everything else she has severe ME) it causes a lot of painful sensitivities to things like light, noise and movement, so a ward situation is a total nightmare and makes everything harder. She is also very cut off from everything and everyone - I am unable to get down due to being bedbound and other team members have work. Her dad is visiting occasionally and her mum was actually admitted to the same hospital last week (is out now but due to have surgery on the 16th of September). Pal Matty and his mum have also visited which is ever so kind of them!

If anyone would like to send her a card, letter or small gift it would be greatly appreciated please, she’s very isolated and could do with her spirits being given a lift :)

Thank you, Viks

Update 20th August 2004

When will things ever start going right for kitten? All change again and a new diagnosis, her veins aren't suitable for a PICC or Midline, so she’s now having a Hickman line put in and they think she’s got addisions. For more info see http://www.niddk.nih.gov/health/endo/pubs/addison/addison.htm The last thing Kat needs is another condition which will be with her for the rest of her life and having a central line AGAIN will be fun for her... Not sure how long she's now going to have to be in for, they were saying a month at least (on top of the month she's already been in) before they spotted this condition. Prof Pinching also thinks she has to quote "other serious stuff" too. Hickman will be placed Monday and she will probably be put on the renal unit.

Will be ordering a TV/video this weekend if anybody is interested in chipping in (please note I've sent this email to various different people, so apologies if your not close to Kat/or interested in this), as well as doing a CD of verbal messages (if anyone fancies recording a message and emailing it to me, I'll put them on CD), also if you would like to write to her, the details are at the top of her page.