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Dee L

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About Dee L

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  1. Shelley.......that is beautiful....I am sure you miss him very much x
  2. Thank you all for your responses. I will follow up on the links you have provided Jo and Shelley - thank you. Amanda, love your euphemism, it really made me laugh. You are right also about the strength of relationship, this illness has actually brought us closer together (despite the intimate aspect). For years I had been a very independent person never asking for help with anything and when I suddenly became unwell I had no choice but to let others do things for me. After a few months it dawned on me that my husband was actually enjoying looking after me and when we discussed this he admitted that he hadn't felt needed until then! Profound words indeed. Take care Dee
  3. Hi all I recently saw a post on another site regarding smear tests being very painful but I haven't seen any posts or literature regarding how Scleroderma affects the 'vagina' on this site so I wanted to share my story. In summary I was diagnosed with Scleroderma in 2008, had a crisis in 2011 which was diagnosed as heart and lung failure resulting in having myocarditis and lung fibrosis, started new treatment regime including cyclophosphamide, rituximab and mycophonolate (which I still take) and I am delighted to say I have not only come through the other side but there has been evidence of the lung improvement. I lead a good life, am not as fit as I once was but it doesn't stop me getting on, however............there are still symptoms which I find frustrating such as Raynaud's, reflux causing regurgitation (despite being elevated in bed) and even more frustrating is how my sex life is being affected. My general practitioner is very understanding but is reluctant to say it is due to Scleroderma, she thinks the cause is due to dryness (post menopause) but it doesn't matter how much lubricant I use, the pain is excruciating and unbearable and even causes bleeding. Luckily I have a very understanding husband and there are lots of other ways to be intimate It would be interesting to hear if other people have similar problems and how they overcome them? Have a great day D x
  4. Hi Mdduk27 I can't help you by saying I suffered the same complications as your wife but I can relate to her in that my heart and lungs went into failure in 2011 leaving me very poorly. I was sent to a 'Scleroderma' specialist hospital for my treatment and future referrals and they knew exactly how to deal with my problems. I am now happy to say I am very much improved and still receive regular and ongoing treatment and check ups with the London hospital. I am back to work and leading a happy 'Scleroderma' life :) You and your family are not alone, sometimes it is harder for the relatives than it is for the patient but consider this forum your friends, it has helped me immensely. Best wishes to you and your wife - it must be really tough with such a young family. My thoughts are with you. Dee
  5. Hi Jo So pleased that all went well and healing nicely. I am now waiting to see someone at Southampton General Hospital on the 12th November for a pre-op assessment to see if I am suitable for extraction (originally two teeth needing extracting). In the meantime I have now discovered a hole in a tooth on the opposite side and now have three loose teeth on the bottom which I am clinging onto for dear life ha ha. Perhaps I should start looking through the glossy magazines for a super-duper full set of falsies to replace them all at the time of my extraction. I wonder what toast is like dipped in tea ha ha.
  6. Thanks everyone for your response. I hadn't got as far as considering dental implants! but thanks for the heads up. Good luck with your extraction next week Jo. Keep us posted as to how it goes. I have now found reference to oral specialists at Guys, Kings & St Thomas' Institute who consult with Rheumatologists so I now have the difficulty of convincing my local government that this is a necessary referral as nobody local is willing to touch my teeth with a bargepole! Take care Dee
  7. Hi all I have systemic sclerosis with heart and lung involvement and am doing extremely well since going into heart and lung failure in June 2011. With great support from my health team, I have now recovered from Myocarditis and my lung function has improved. Long may it continue :emoticons-yes: I now need a couple of teeth extracted and my dentist referred me to a local specialist with a view to him extracting under a general anaesthetic (complications with the size of my mouth - story of my life ha ha). However the anaesthetist has discussed with my local Cardiologist the risks of using a 'general' as I have an irregular heart rhythm and Atrial Fibrillation and they have concluded that I should not have the procedure under 'general'. So......being a brave lass I suggested they extract with a 'local' but nobody is willing to do this. I have done a little research on the web without success and wondered if anyone knows of or has experience of an oral specialist who has experience of Scleroderma patients? Thanks in anticipation.
  8. Hi Sooty30 Thank you, my visit to the Royal Free was very good. I met Dr Shreiber for the first time. How long has your husband had SSc and lung fibrosis? I would love to hear more about him. I have had SSc since 2008 and the lung fibrosis was discovered June 2011. Since then I have had six pulses of Cyclophosphamide and two courses of rituximab which appears to have had an effect. Since my visit last week they have introduced me to Mycophenolate and the plan is to refer me to Prof. Wells at the Brompton for further tests. I look forward to hearing more from you about your husband. Dee
  9. What a shame Amanda, I hope your appointment went well? Dee
  10. Hi all I am visiting the Royal Free Hampstead on Thursday 26th April (this week) and wondered if anyone else will be there that day and fancies meeting up for coffee? I have systemic scleroderma with pulmonary fibrosis and myocarditis and would love to chat with anyone who has similar or anyone who just likes to chat! If you are interested, pm me. Dee
  11. I last wrote in August last year having spent three and a half weeks in hospital with heart failure and lung fibrosis and I want to up-date you with some very positive news. After leaving St Thomas' Hospital, London I returned home to the Channel Islands and had 6 pulses of Cyclophosphamide followed by a course of Rituximab. I then returned to the Lupus Clinic at St Thomas' for a review only to be told there were concerns about my heart. The following day I saw a Consultant Cardiologist from the Royal Free Hospital who confirmed I had developed Scleroderma-related Myocarditis and my Trop T level was 300 (normal range is 0-13) and was told to return home to rest for 3 months until my next review which was in January. Those 3 months were very scary and I was very unwell, vomiting several times a day whenever I exerted myself (get up to make a cuppa!). The up-side of this is now I have lost 4 stone in weight and am wearing size 14 jeans for the first time since having my first child 25 years ago! I have had my reviews at both The Royal Free and St Thomas and I am delighted to say that my Trop T is now down to 55 and I am feeling wonderful! I no longer use oxygen and it would seem the treatment (either Cyclophosphamide or Rituximab or even both) has improved my lung function which was an unexpected bonus. I am now doing 2 six-minutes walks around my home daily (without vomiting) and am to have an assessment at the end of March with a view to starting cardiac rehab. My Cardiologist told me in January (on my 48th birthday) that he didn't think I was going to make it - oh don't I just like to prove people wrong! He also said I was only one of six people in the UK with this condition and he has only ever met twelve - isn't it great to be special? I hope my positive news will give somebody out there the strength to keep fighting Dee L
  12. Thanks Lizzie for that very sensible advice, I will pop it on my shopping list. I wish we all had the money to go for 'Night Owl's' suggestion! Dee
  13. Hi Amelia I also find silver gloves really help and wear them throughout the summer but you have to have warm hands to start with otherwise I 'hug a mug' of something hot with the gloves on and that is heavenly. I have tried heated gloves in the winter but paid over £100 for them and then found them to be too heavy with the battery pack with very little heat! Good luck in your search. I have been trying to find a heated steering wheel cover without success - anyone got any good ideas for that? Dee
  14. Thank you all for your good wishes. Yes it is sad that so many sufferers are undetected especially as the literature states it should be caught early. I am due to have my third dose of cyclophosphamide tomorrow and am really hoping it will kick in soon (patience!). I will keep you posted. Amanda, as I live in the Channel Islands, private visits to the Royal Free would be very expensive for me and unfortunately our local government won't allow us to choose who we see. I even have to see my 'original' rheumatologist this week because if I refuse to see him, they will pull the plug on me going to the UK for any further referrals. I am due to go back to St Thomas' in September and whilst I was a patient there they had suggested I see Prof Denton annually. I am happy with that. Now then, will I pluck up the courage to tell my rheumatologist how I feel on Thursday? Hmmmmmm.....
  15. As I am sitting at my desk wondering how I got myself into this state, I realise I didn't, it was a combination of my healthcarers and my own lack of confidence to stand up and say "believe me and take me seriously". I want to share this statement with you all and hope that you don't let it get so bad and the story goes....... I was diagnosed with general Scleroderma in November 2008 and not given any specific type (probably because this is dependent on forthcoming symptoms). My many symptoms were treated with Prednisolone and Methotrexate and mostly kept under control with me returning to work after being off for 18 months! One of the things that bothered me from the beginning was the inability to exercise or exert myself and as the other symptoms were improving this one definitely wasn't. I mentioned it each time I saw my reumatologist but was often told it would get better if I lost some weight or exercised! On a couple of occasions I got back to my car and screamed with frustration. My lifestyle changed so gradually and I was learning to live with the new symptoms on top of the breathlessness. It was a real eye-opener when I visited family in the UK and my 87 your old grandad, who runs 2 miles a morning, was shocked that I could only walk ten paces without having to stop and cough my lungs up! I decided to seek a second opinion from Professor Denton at the Royal Free Hospital in London in January 2011 who confirmed I had systemic scleroderma and recommended to my reumatologist and my general practitioner that I have a series of tests including Lung Function, CT Scan, Echocardiogram. By Easter no appointments were forthcoming and I saw my reumatologist (for the first time since seeking a second opinion) who appeared to be put out by my getting a second opinion. I again told him how I was feeling (breathless at the slightest exertion, constant dry cough, cough-induced vomiting, losing weight) but I didn't have the strength of character to demand he send me for these tests. It would seem I started to believe I was being a nuisance (so out of character for me). In May I put my foot down and visited my general practitioner with my husband for support (and proof to him that I was telling her everything). By now I had lost two and a half stone in weight since holiday and couldn't get through the day without vomiting. I was having acid reflux at night despite using 5 pillows and taking omeprazole and oesophogeal reflux even though I was barely eating. This time my general practitioner started the ball rolling with tests and I had a Lung Function Test and then an x-ray. I saw my reumatologist the next day who told me the x-ray showed my lungs were slightly smaller than the last x-ray but it was probably because I didn't breathe in enough!!! He also noted my heart was enlarged. At last he agreed to all the required tests! The following week I wasn't feeling well at all (shaking inside and feeling as though I wasn't quite here) so my general practitioner sent me for an ECG which showed my heart was "all over the place" so I was told to see my general practitioner as soon as I was able. Two days later, sitting in my general practitioner's office and feeling much better than previously, she listened to my chest and asked me to sit in the waiting room whilst she spoke to a physician. I was sent to A&E where I was admitted with fluid on my lungs and pericarditis. Five days and several tests later I was taken by air-ambulance to St Thomas' Hospital in London in the Cardiac Care Unit. Three weeks and many, many tests later I was sent home with the diagnosis of sclerosis of the lungs which I understand to be irreversible and also some damage to the main chamber in my heart. I have stopped taking the Methotrexate and have started a course of IV Cyclophosphamide (third treatment next Tuesday). I am now under the care of the Lupus and Respiratory team at St Thomas' and am due to go back in September. This time I will ask all the questions and not be afraid to say it as it is! The main reason for sharing my story (apart from therapy :VeryHappy: ) is to ask you not to hold back on anything or allow anyone to make you feel you are making a fuss. Scleroderma can become serious and the correct health care is essential to ensure you are treated appropriately. Love to you all out there and hope you are smiling too. D
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