Our Pal - Faye T

Story written 2004

Faye’s problems started in June 2001 with horrendous dysfunctional uterine bleeding and chronic pelvic pain. In November 2003 after a continuous battle with the medical profession, she was eventually diagnosed with having Endometriosis, which meant further surgery and drug therapy to try and control this disease. During this time she also suffered with arthritis and continual kneecap dislocations caused by the drugs she was being prescribed.

In February 2003 she began continuously vomiting after eating solid food. She was treated for a Duodenal Ulcer, Gastritis, Oesophagitis, Duodenitis and was also diagnosed as having a Gross Oesophegeal Reflux, but the problems did not go away. She lost 24kg in weight and finally in October 2004, a specialist in London diagnosed her as having Gastroparesis, which means paralysis of the stomach. In January 2005 she had a Jejunostomy operation and is now fed liquid food through this directly into her small intestine. At this present time she is unable to digest solid food properly and will in the near future be having another operation to insert an Enterra device, which is a Gastric Pacemaker, to try and alleviate the debilitating symptoms of this disease.

In November 2004 during an operation to stabilize her right kneecap she suffered an anaphylactic reaction to the anesthetic, she had a cardiac arrest and had to be resuscitated. The knee operation was cancelled. She now has her leg in a splint and walks with crutches but is hopefully due to have the operation to stabilize her kneecap in the near future.

It has been a difficult four year battle for Faye to get her medical problems correctly diagnosed. She has been to theatre fifteen times for various procedures and has been in hospital over thirty times in East Sussex and London. As she has missed so much schooling her GCSE’s have now been deferred. Despite all this she has retained her sense of humour and is a thoughtful, caring and loving daughter and sister.

Update 30th January 2008

Thank you to everyone who has sent gifts, card and letters to me during the last few years. Your contact has helped me through very difficult times, especially when I have been in hospital. I am now eighteen and too old for Post Pals but I will always be extremely grateful to them for including me on their site.

Update 5th December 2007

We have been backwards and forwards to hospital many times over last three months and had lots of problems with infection. Faye is not being fed through her jejunostomy tube and is losing even more weight. She has been in our local hospital again because she was dehydrated and the CT scan that the Royal Free Hospital asked our local hospital to carryout has not been done. We are still waiting for the medical profession to get their act together! Our GP has contacted the Royal Free again this week and asked them to speak to our local Consultant.

Update 13th September 2007

I’m not very pleased at the moment. It was confirmed three weeks ago that I have contracted MRSA. I’ve been in hospital loads of times before and had avoided it so far. My GP said I didn’t need that on top of everything else! I now have to be isolated when I visit any department or ward in hospital. Physio has stopped as I have not been well enough to do it.

Thanks to everyone who sends post to me.

Update 20th August 2007

For my birthday on the 30^th July, I received loads of presents and cards. Thank you to everyone who sent post to me. Some of the gifts I received were from companies who had been contacted by a ‘mystery friend’. Lily my cat also got some presents. I have thanked most of the companies and people who sent me presents apart from the company who sent the beautiful wicker cat basket for Lily. There was not even a name of the company on the box. Thank you whoever you are. I have also received several gifts from a family In Israel but unfortunately I cannot understand the address of the sender so I cannot write to you to say thank you. These gifts were sent through Post Pals so I hope that you will send me your address so I can thank you personally.

I would especially love to be able to thank my ‘mystery friend’ who arranged all of these surprises. Whoever you are, you are very special and you certainly put a lot of effort into making my birthday special too.

As for my health, i saw the orthopaedic surgeon about my knee and scoliosis again. Although the screws in my knee stick out he has said taking them out will cause even more problems, so he is going to leave them in at the moment. I had several x-rays of my spine to check any further damage. He said they do sometimes put people in special support corsets, but in my case, because of the muscle wastage caused through malnutrition and the position of my jejunostomy, it was not a good idea. I’m having Physio at home but finding it very hard going. The Ibandronate infusion for my osteoporosis is now back into the twelve week routine after being messed up by the Royal Free refusing to give it to me. I had the final results of an MRI scan of my Pituitary gland to check if I had a growth there. No growth was found there but apparently I do have pineal cysts on my brain, but they are of no significant size at the moment to cause major worries. It might explain the severe headaches and visual disturbances that I get though. As for the Gastroparesis, nothing new has happened. I haven’t put on any weight, still vomit when I eat and my bowel is still not working and is causing severe pain.

Update 27th July 2007

A beautiful two-tiered wicker cat basket has arrived for my cat. There was no note with it or any name to say who had sent it. I was thrilled with it and so is Lily, my cat. She has already adopted it. I would love to thank you personally for sending such a wonderful gift but as I do not know who sent it I can only thank you through my Post Pals page.

Update 24th July 2007

Faye’s feeding tube blocked for nearly a week and we had usual problems locally getting it unblocked. The GP had to contact Royal Free who had no beds anyway and they said our local DGH should sort it out. We eventually sorted it out at home! She has started Physio on her joints, knees and back, but is having to take more pain relief before and after this, which makes her bowel worse, so we are not winning.

Thank you to everyone who sends gifts, letters and cards to Faye. Not only are wonderful people in the UK contacting her, she receives post from all over the world. Your kindness makes so much difference to her. As any parent of a sick child knows, they become very isolated, with the best part of their lives revolving around the medical profession and hospitals.

Update 20th June 2007

Faye came home from the Royal Free on Friday 15^th after nearly nine weeks. Whilst there the Gastroenterologists found out that her large bowel is paralyzed. This has been caused by the medication she has been taking and only time will tell if it will regain full function. The gastric pacemaker is no longer an option, as the disadvantages out weigh the advantages, so she will have to continue being fed by the Jejunostomy tube. The Professor looking after her says he hasn’t given up on her yet!

As for the pain control that she also went in for, this was a total disaster. Faye’s condition deteriorated very badly and she can barely remember what happened to her during a particularly bad couple of weeks. It was then suggested that she stay for another 1-2 months in order for things to be put right. Faye decided that she no longer had any faith in this particular Pain Consultant and we as a family agreed with her.

On Wednesday 13^th June, Faye received a surprise visit from actor Anthony Head clutching a large bunch of flowers (which she wasn’t allowed to have on the ward as flowers are banned). Faye had met him and his lovely wife Sarah Fisher previously at the Cats Protection Awards in 2006. It was the only highlight of the nine weeks she was there. He stayed and chatted for a long time and he certainly cheered her up.

Thank you to everyone who has sent cards, letters and gifts to Faye whilst she has been in hospital. Her dad came up to London every weekend and brought her post.

Update 21st May 2007

Just to let you all know that unfortunately Faye is still in the Royal Free Hospital Hampstead. She is now starting her 6^th week there as things are not going very well for her.

Update 10th April 2007

Faye is very frail at the moment. She should really be in hospital now but she hates our local hospital so much. Our GP has been talking with the doctors at the Royal Free Hospital and she is having a CT Scan on Friday 13^th April at our local one and then she is being admitted to the Royal Free Hospital on Monday 16^th April for further investigations. Hopefully things will start to improve for her once she is under their care, but we are not sure how long she will have to be in hospital for.

Hope everyone had a peaceful Easter. Thanks to everyone who writes to her. She is bedridden so she looks forward to your post.

Update 13th February 2007

Faye is home from hospital with a new jejunostomy tube (no stitches) but she has to go back in for further investigations. On top of everything else she has now been told she has Scoliosis of the spine but the Orthopaedic surgeon is going to watch to see if it gets any worse before he does anything. He says she has enough problems to contend with at the moment! The drug that she is given every three months intravenously for the Osteoporosis has also been changed, as the Rheumatologist said she was probably not absorbing the old drug properly because of her gastrointestinal problems.

Update 17th January 2007

Faye was very poorly over Christmas and spent most of it vomiting and she doesn’t remember much about Christmas Day so we have promised her we will have a ‘Christmas Day’ later in the year. She received loads of cards and many gifts. Thank you to all of you super people who thought of her at Christmas and a huge special thank you to her Christmas Elf, Kate.

She is now going into the Royal Free Hospital, London, tomorrow (18^th) to have a different type of jejunostomy tube fitted. Hopefully this will be much better as it doesn’t have to be stitched on the outside.

Update 14th December 2006

Faye came home from hospital today. It has been a long and frustrating three weeks. The new jejunostomy tube has still not been fitted. The surgeons in Eastbourne decided at the beginning of this week that as Faye’s case was so complicated, they didn’t want to operate on her, so her Gastroenterologist has been trying to get hold of the Professor at the Royal Free for advice what to do next. They have patched up the old tube in the mean time so that she can restart the enteral feed. As she has had no feed since the 20th November she has lost even more weight but her Consultant agreed that she could go home for Christmas. Hopefully she can remain stable during that time. She has been re-united with her beloved cat Lily.

Seasons greetings to everyone!

Update 5th December 2006

Faye is still in hospital on IV fluids only. The jejunostomy tube still has not been replaced as they still have not sorted out what type of tube they are going to use. Thank you for all the cards, letters and gifts that have been sent to her. She received from Charleston, USA, a beautiful crocheted shawl, butterfly and guardian angels. These brightened her day tremendously and have been much admired by the hospital staff.

Update 25th November 2006

Faye was admitted as an emergency last Thursday 23rd. She was unable to keep fluids down at all and her jejunostomy tube cannot be used at the moment either. She is being given IV fluids only at the moment until they decide what to do about the feeding tube. Unfortunately, because she has lost so much weight and is medically unstable it could be a long stay.

Update 2nd October 2006

Faye’s medical state is deteriorating. Her jejunostomy tube is constantly being stitched back in and is causing major problems and she is still losing weight. The Gastroenterologist told our GP he would write to the Professor in July and again on the 24th August after the Surgeon at Eastbourne said he wasn’t prepared to replace her tube as her condition is so complex. We checked last week and the letter to the Royal Free has not been sent. So, our GP has written himself and also been in contact with the Royal Free by telephone. We are awaiting news from London. Faye is bedridden most of the time and totally fed up with the lack of progress.

She did get a lovely surprise following on from the Cats Protection award ceremony. The Woman’s Weekly magazine has published an article about rescued Cats and Faye and Lily, her cat, are featured in it (3rd October 2006 edition).

Thank you to everyone who writes to Faye, it does cheer her up.

Update 10th July 2006

Things are moving very slowly at the moment. It was thought Faye might have a peritoneal abscess but x-rays have ruled this out. The Jejunostomy tube is still being re-stitched every couple of weeks and they are now talking about definitely changing the type of tube. Her local Gastroenterologist is at last going to contact the Consultant in London for advice!! This was after our GP insisted he come to our home to see Faye. He is fed up of sending her into Hospital and she is seen by different SHO’S or Registrars who all give different advice or say they cannot deal with it because her case is so complicated and the Consultant is the only one who can make any decisions. The Consultant is never around to ask though.

Faye’s cat Lily was short-listed in the Best Friend category of the National Cats Protection Awards. She didn’t win but we did get to meet several Celebrities including actor Anthony Head (Buffy/Little Britain) and his partner Sarah Fisher who runs the Tilley Farm TT team & TT touch Centre near Bath. Faye had been very poorly beforehand but insisted on going to the ceremony and was unwell whilst there. They were both wonderful to her and made her day very special. She was also given a beautiful framed picture of Lily taken by a professional photographer.

Thank you to everyone who writes to Faye.

Update 8th April 2006

We heard this week that her Gastroenterologist in Eastbourne has written to several surgeons in our local hospital to ask them if they are able to replace the current jejunostomy tube, which is causing so many problems. The idea is that a larger tube might allow more feed to go through and not clog so much. As this is a tunneled tube it might not be possible for it to be done locally, so we may have to go to London again to have it done and because she has to have the stitches replaced so often now they are also hoping it can be re-sited at the same time.

She is also going to have a new type of feeding pump, which not only pumps feed; it also flushes water through as well. Her Dietician has the pump but unfortunately because this has come from America, we are still awaiting the giving sets, etc. We can’t use it without them!

As for the Gastric Pacemaker, this will not be attempted until Faye is nutritionally stable. She will have to continue being fed through the jejunostomy anyway even when it is put in. So the first priority is to get her feeding problems sorted out. Her first jejunostomy was done in January 2005 and she is still not nutritionally stable, so it seems it is going to be a long job.

She has had an amazing month for post. Thank you to everyone who has written to her. A very special thank-you to Julie Barrett and all the talented card-makers from the CMPC/Cardmaking forum RAKers for all the beautiful cards and card making materials you have sent her.

Update 23rd March 2006

Things are not going too well at the moment. Gastric emptying tests done in Brighton showed that things have got much worse. The Professor in London who Faye is under for the Gastroparesis has been consulted about the latest test results and he is now suggesting the Gastric pacemaker again, although there is no guarantee that this will help anyway. Unfortunately, this was previously put on hold because Faye is not nutritionally stable and then because the success rate of this pacemaker is so low the project was postponed anyway. Well, she is still not nutritionally stable and in fact is still losing weight because she cannot tolerate large amounts of enteral feed through the jejunostomy.

The Gastroenterologist in Brighton also saw Faye about the Gross Oesophageal Reflux but cannot help her, as this is being caused by the Gastroparesis and he has suggested further stomach surgery might be necessary. This would have to be done in London anyway.

On top of everything else, the jejunostomy tube that she has is held in with stitches in the outer skin. When she had this done in July 2005, she was told they should last six to eight weeks before they need to be replaced. She has now had this re-stitched twelve times in seven months and the whole process has become a nightmare for her.

Our brilliant GP, who has looked after Faye for a long time, has now asked for a meeting with her Gastroenterologist who she is under in Eastbourne to find out what is going to happen next.

Thanks to everyone for the balloons, gifts, cards and letters. They really cheer her up.

Update 6th February 2006

Faye has not been at all well over the last two months. Her condition has deteriorated and she has recently had more tests and we are awaiting the results. She has lost even more weight because the enteral feeding is causing major problems and this is now causing major concern to everyone.

She has received some wonderful e-mails, cards, letters and gifts not only at Christmas but during the rest of the year. Thank you everyone who spent time doing this.

Update 16th December 2005

Faye nutrition problems still not sorted out and they wonder why she is still losing weight! Further hospital appointments in the New Year. She is completely fed up with the medical profession at the moment.

MERRY CHRISTMAS AND A HOPEFULLY HEALTHIER NEW YEAR TO ALL POST-PALS AND EVERYONE WHO RUNS POST PALS!

Update 31st October 2005

Faye spent three weeks in hospital but came out having lost even more weight and the enteral feeding problems are still not sorted out. Her Consultant has contacted a specialist centre in enteral nutrition for advice. Still awaiting other tests in Brighton.

Thank you everyone who contacted her via post, etc. She has received lots of e-mails this month. Unfortunately our telephone and internet have been out of action for a while. It has taken BT three weeks to fix it! So we are just catching up with the e-mails.

Best wishes to all Post-Pals and everyone who runs Post-Pals.

Update 5th October 2005

Faye was admitted to hospital in Eastbourne on Monday, 3^rd October. She is unable to tolerate the enteral feed at the moment and has lost more weight. They are trying different feeds as it is possible she might have become allergic to the old feed. She is feeling very unwell at the moment and hates being in hospital again but unfortunately there is no other option at the moment. She also has to go to Brighton to have some other investigations done for the reflux. She may be allowed out sometime next week if the feeding problems can be sorted out.

Thank you everyone who has e-mailed her, sent her gifts and written to her. She received loads of postcards from all over the world and she was sent some lovely cat stamps from America. She also received a beautiful guardian angel doll the other day from an anonymous post pal. It really does cheer her up when her Post-Pals post arrives.

Update 16th September 2005

Faye is mostly bedridden at the moment. The enteral feeding is causing dreadful problems and she is not getting enough nutrition so she is very weak and is losing weight again. The anchoring stitches holding the new jejunostomy tube in place have had to be replaced three times since the operation at the end of June. They told her they would only need to be replaced every two months.

She has to have another Endoscopy on the 27th September as the acid reflux is burning her oesophagus and they want to check what damage it is causing. She also has to have a PH study in Brighton.

Her knee is progressing slowly but we have to keep postponing the physio as she is so weak. (She gave the Physiotherapist a nasty scare last week when she flaked out on him).

A bone density scan showed she has Universal Osteopenia and she has been started on a course of drug IV infusion every three months to try to replace the bone density loss. She is totally fed up with doctors and hospitals at the moment.

Update 22nd August 2005

Faye has not been too well since she came out of hospital in July. She is having problems with the Enteral feeding. The Physio on her leg is progressing very slowly and she still has to use a wheelchair to get around.

Thank you everyone who sent cards, letters and gifts to Faye, especially as it was her birthday on the 30th July and it made it an extra special month.

Update 25th July 2005

Faye is now home from hospital. She has recovered from the pneumonia and is being fed through her new jejunostomy tube. Her leg will now be in a special brace for several months and she is having physiotherapy as well.

She is pleased to be out in time for her birthday as she had been very worried that she would have to spend it in hospital.

Update 12th July 2005

Hello I hope you’re well,

I would just like to thank all of you for your kind and supportive emails, they mean so much to me and always cheer me up. I am sorry I have been unable to reply to you but I haven’t been well enough to get online and now I am in a wheelchair after my knee operation so even If I was well enough to reply I can’t get to the computer at home. I am currently in hospital in London recovering from my operations and I have Pneumonia but once I am at home and well enough I will be emailing all of you personally,

Thanks again, Faye

Update 5th July 2005

Faye is still in hospital. She had first operation to fit new tube on 29/06/2005. She then had to have a second emergency operation on the 01/07/2005 as she developed heart and breathing problems. They found infection in the wound and she also has pneumonia. Faye is not too well at the moment.

Update 27th June 2005

Faye is going into Malcolm ward, Royal Free Hospital tomorrow, Tues 28th. They are hoping to operate on Wednesday to insert a different type of feeding tube. If all goes well she willl be able to come home after 9 days.

Update 18th June 2005

Faye met one of the tennis players, Amelie Mauresmo, playing in Eastbourne this week in the Hasting Direct Tournament. Her photo has been in our local paper, is on the Hospital Intranet and is also on the Hastings Direct site.
The hospital photographer also gave her some great photos that he had taken. Ironically, she was in hospital last year when Martina Navratilova visited the hospital.

Faye came out of hospital on the 17th after spending three weeks in hospital. She will be in plaster for another six weeks at least and then her leg will be put in a special brace. Her enteral feeding tube problems are still not solved and she has to go back into hospital again to have a different extension fitted.

She has been overwhelmed by the wonderful gifts, cards and e.mails that she has received. Thank you Post Pals and everyone else who has contacted her, for brightening up her life.

Update 8th June 2005

The operation on her knee was on Tuesday. As usual with Faye it turned out to be not as expected! Her knee was in such a bad state they had to use screws into the bone and staples to stabilise her knee cap. The surgeon remarked afterwards that the condition of Faye’s knee was the worst he had seen. She also had to have a drain inserted into her knee. She will be in plaster (top of thigh to ankle for 6 weeks) then she will have extensive physiotherapy and this is on top of all her other problems. Obviously this knee operation was and still is very painful.

Update 29th May 2005

Faye was readmitted to Eastbourne DGH on Friday 27th May. Her gastrojejunostomy tube perforated and fell out. She is on IV Fluids and is well cheesed off. She will have to go to the Royal Free next week to have another one fitted.

Update 3rd May 2005

Just to let you know Faye is out of hospital after having the new gastro-jejunostomy tube fitted. Unfortunately she is experiencing problems with this at the moment and is not feeling at all well.

She did manage to get to the awards ceremony and received a super trophy and certificate which she took with her into hospital in London and they were much admired by the Doctors and nurses there. She also got her picture in the local paper.

She also wants to thank everyone for the wonderful e-mails, cards and presents they have sent her. They have certainly brightened up her day.

Update 11th April 2005

Faye’s operation was cancelled twice and she came home after a few days. She’s due to go back into hospital on Wednesday 13th for the operation on the 14th. At least this means she will be able to go to the awards ceremony tomorrow.

Update 5th April 2005

Faye is going into hospital tomorrow for an operation on Thursday because her jejunostomy’s failed and she’s got to have a gastro-jejonostomy so hopefully it’ll work.

She’s been nominated for an award, at the Eastbourne achievers awards 05 in the brave child bit, and is one of the three finalists and the ceremony’s on April 12th but it looks like she won’t be able to go now because of going into hospital.