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About Sooty30

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  1. Great news my husband also saw Professor Denton :)
  2. No still not sorted. Been up to the Royal Free again so to be honest I haven't tried. I will try again soon. My mind is frazzled at the moment after filling out disability forms and we are only on about page 12 :)
  3. I keep trying to join the scleroderma society but as soon as I put all my information in online all that comes up is record not saved. I can't download it as I only use an iPad and don't have a printer. I tried last week as well with no luck I wanted to see if we could claim our accommodation expenses back as we had to stay in an hotel twice with having to be on ward early to start ritixmab. I read on their site that they can help with covering accomodation expenses as a result of treatment in hospital. Now I am getting frustrated as surely the longer it takes to join I may not be able to try to claim it back. What am I doing wrong or is it just the site?
  4. We are about to fill the forms out for my husband (we're in the UK.) I have to admit I'm worried he will get turned down, but am going to put the Royal Free down as his specialist along with all the others. We don't think he will return to work and he is looking at being retired due to ill health come about September. We have also applied for a blue badge and just got letter back saying they will contact us for a appointment. I am worried that that day will be a good day, as one day he can walk not like myself but much better for him; but another day just walking 6 metres to the kitchen can make him cough so much he goes dizzy. Dizziness is something he struggles a lot with right now so hopefully that will help his forms too.
  5. Spoke to the rhumatologist in Chelmsford and they are going to sort out his bloods on Tuesday and give us the information to take Wednesday so that's good news. Why can't your local general practitioner be as helpful?!
  6. Morning everyone; we were back at the Royal Free yesterday for my husband's second rituximab. Unfortunately they found he has a chest infection after a chest X-ray so wouldn't give him the treatment. Sent home with antibiotics and have to go again next Wednesday. I know it is for his own good they pulled the plug yesterday but so frustrating as a room for hotel in London 3 times in a month plus travel is costing us a fortune. More than we have spare anyway, but we don't reckon we qualify for government help. I tried joining the Scleroderma Society online but kept being told record not stored. I'm just fed up really as it's the child care too; keep pushing my daughter from pillar to post is starting to affect her. I think we may take her next time; the sister on the ward is fine with that and if she gets a bit noisy I will take her out for a while . He just doesn't seem to be getting any better and he is admitting that now but it's getting him down. It's hard work trying to stay happy for us all when he snaps my head off all the time, then he says sorry and it's fine as I know he can't help it but I am scared it's only going to get worse. I find it hard with doing everything around the house and garden, raising a nearly 3 year old and working 34 hours a week which will be going up to 48 hours a week in August if he doesn't go back himself and what really gets me is when I do something and he tells me I haven't done it right......that makes my blood boil. Sorry for the rant not many people understand how hard it is for the partner at times. Off to the doctors today to try and ask to have his bloods done on Friday. Royal Free said if we have that done on Friday and bring the results on Wednesday, meaning we would need them back by Tuesday so we can travel up to London on Wednesday after rush hour and start the infusion straight away as we won't have to wait for the rituximab as it's on the ward. Clinic said on the phone yesterday it would have to be done today ( what part of it needs to be done Friday don't they understand?) so going to ask to speak to the practice manager, or we have to see our rheumatologist next Tuesday in Chelmsford. He referred us to London so I'm going to phone his PA today and see if we have the bloods done on Tuesday and can we hang around for a couple of hours for the results so we take them with us. Fingers crossed
  7. Hello treatment went well he didn't react to the rituximab which was good. We were worried on the Monday as wasn't sure what to expect but was soon put at ease.he felt nice and spaced out when he had some medicine before the main infusion took place. Was a very long day as was on the ward for 9 and didn't leave till 6. We did stay the night before in a hotel, glad we did and drove there to try and save a bit. Only thing I'm a little annoyed about is it says on the car park you can only park for 5 hours. Surely this can't be right if your having treatment there,we go back next Monday so will stay the Sunday night too as it is just easier. He hasn't been too bad since then. I wouldn't say better at all just not any worse. He keeps trying to do things which is hard as he feels washed out. Like today he cut the back garden grass, our garden is small, I could do it in 10 mins. It took him 2 hours with stopping and starting but he hates it if I tell him not too do it. I think we are going to fill out his disability forms soon. Did I read on here the Royal Free will help you do it? If so how do you raise the subject with them, or is it easier to just get on with it yourself, have just applied for blue badge too. I freaked out today as I took my daughter swimming and when she was in the shower I noticed her hands were really blue, one thing they said to look out for, I am hoping it was just being in the pool too long as she was getting cold. Going to keep a close eye on her don't know how I'd be if my baby got ill too. Hope everyone is keeping well and the sunshine we had today is here to stay xx
  8. My husband was told he had scleroderma only in last few months. They have only just said he has lung fibrosis in last few weeks, he only has a 50% of his lungs working.no air entry at the base of his lungs. We were going to start on the cyclophosphamide but they have been in contact with The Royal Brompton and they feel my husband it could be harmful if he waits for the cyclophosphamide to be set up so we are starting the rituximab on Tuesday. He will have 2 lots of this I think maybe cyclophosphamide later down the line. He has been on the mycophenolate for a few months. He is struggling at the moment, not able to work and get about, starting to get him down. Have also just applied for a blue badge after the advise from his general practitioner and company general practitioner. That's fantastic that things have helped since you had the rituximab. How did you feel afterwards? Did it make you feel unwell? Better dash as off to work, lovely to hear from you.
  9. Amanda, thankyou for you your invite. I am at work that day; I leave the house at 5.30am and not back till 7.30pm so a long day. Another time would be good though. Thank you for your information as well. Will speak to hubby about a wheelchair; I think I know what he will say at the moment but maybe he does need one now and again outdoors. Do you know the name of the low cost place to stay? That may work well as we actually plan to drive up bank holiday Monday. They want him there for 9am so we thought to take pressure off as we would need to leave Harwich at silly o'clock and have to find it. I have never driven in London before and I was more worried about parking once there once there, plus not have to stress if we get stuck in traffic as the A12 is a nightmare in the rush hour. Maybe even stay a second night if he reacts to the treatment. I will have to wait and see; I just didn't want to get the tube and train because if he feels ill he can just sit in the car with no hassle. Jo, thankyou also for your information links.
  10. We received a call from the Royal Free and now a letter, they want to start him on Rituximab on the 8 th of May. Not looking forward to this at all as not have no idea what to expect yet.
  11. Hi I hope today went okay for you. My husband has lung fibrosis and systemic scleroderma so have some understanding through my husband what it is like and what you may be going through. What treatment do they have you on?
  12. We received a call from the Royal Free a couple of days ago. My husband was meant to be starting a course of treatment once a month for 6 months, but they have shown his CT scan results to another specialist and they want to try another drug; I've no idea what it is called as my husband took the call but this time it will be once a week for a few weeks. We have to come to the Royal Free for treatment as nowhere closer to home can do it. They want him seen ASAP as they said his lung condition has come on really fast. Is there anywhere decent to park near the Royal Free? I know you can at the hospital but spaces are limited and very expensive as we might be there 8 or more hours. Maybe a hotel? Not sure if I want to use public transport as will cost £108 for train tickets plus I'm worried it will be too much for my husband. He has to sit on the stairs to get his breath back if he just goes upstairs for the bathroom. I'm scared of driving in London but as we live in Essex I know I just need to get on with it as once I have done it a couple of times it will be okay. At least if he feels ill afterwards we won't have the hustle and bustle of the tube and train. Does anyone know if we can claim back travelling or parking charges. We are not on any benefits and what I have read I'm thinking we won't be entitled. Has anyone had any luck getting a blue badge? I'm going to look into it as my husband is not able to walk any distance. Many thanks for reading and helping me out.
  13. Chelmsford is maybe only on offer as one of the specialists there were from the Royal Free so is used to doing these treatments. We had been told that they don't want Keith having treatment at Colchester which is our local hospital as they may not have the knowledge to treat us as well as Chelmsford or Royal Free. Chelmsford is easier for us as I can drive there and take our daughter if needs be rather than trains and tubes in London. We are happy to go where ever as long as he gets sorted.
  14. Hi, all went well at the Royal Free. It was a bit of information overload but we now know he has severe diffuse scleroderma so far his skin, hands, neck and feet are effected. They were also thinking his lung problems were due the scleroderma as well but at this time they didn't have the CT results. He also has Raynaud's as well. We came away and I think they said they wanted to start him on the cyclophosphamide within the month. Hoping to have it done at Chelmsford but have been warned it could be London if Chelmsford can not set it up in time. I thought this was to stop the progressiveness of the disease getting any worse in his lungs. To have this once a month for 6 months. Also I thought this was the way forward we were going. My husband on the other hand thinks they will decide this when they have the CT scan results, but I thought the CT results would make them decide if my husband had to be admitted to the Royal Brompton lung unit for more tests..We so should of written things down. As you can tell we both think the opposite and are totally confused. We saw the lung specialist today who had the lung function tests and CT scan results.The lung function tests have slightly got better and the CT results shows patchy ground glass infiltrate which is seen throughout both lungs. It says this has predominantly subpleural and basal distribution; also dilated airway throughout the areas of abnormal lung indicative of traction bronchiectasis. Minor reticular infiltrate can also be seen within both lower lobes.It says he has wide spread pulmonary fibrosis with diagnosis of NSIP (non specific interstitial pneumonia) The lung specialist has left me feeling like I don't understand. I know it's good his lung function is slightly better but what about the other? They are forwarding results to the Royal Free as well. When I asked him about the cyclophosphamide and the lung unit he said he respects anything the Royal Free wants to do which really wasn't the answer I was after. Do you think I should contact the nurses to find out if the other treatment is going to start in just over 3 weeks? I remember them saying they would write to us within about 2 weeks, but everything seems such a blur.I am stressing so much to the point my hair is falling out and as you can imagine our house is very strained too. I feel as if my husband doesn't listen to what they say or only pick out the positive bits. Sorry for rambling on, thankyou for reading
  15. We are off to the Royal Free today so hopefully know a little bit more. Spoke to Ade on the phone; what a lovely women.....she let us change our appointment by 2 hours so we are able to travel in the off peak to London, bless her;otherwise it would be expensive. We asked for all medical records to take with us so now need a suitcase to carry them . My husband had another CT scan last week and due to have another lung function test on Wednesday then lung specialist 2 days later. I'm hoping we will have a fuller picture then as he really struggles to walk anywhere. Will keep you posted.
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