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About mdduk27

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  1. Hi, thought I'd just give a quick update. My wife's now home but been back to hospital for a week suffering from pneumonia. She seems to pick up chest infections quite easily, she's not on any auto immune system treatment yet but she has an appointment soon with her rheumatologist; in the mean time she has been put on 15mg of steroids daily. We are waiting for an appointment at a transplant centre for her to be assessed for a heart lung transplant because the iloprost will only work for a unknown amount of time. Hopefully things will settle down soon and we can look forward to spending a nice summer with the kids, thanks for all the posts and I'll continue to update. Marc
  2. Hi Just another quick update. My wife is responding very well to the treatment she is on intravenous iloprost, when discharged from hospital she will need to have this infused 24/7 by means of a small pump that will be permanently connected to a hick line. She has right heart failure caused by the PAH and is very lucky to be alive. Thanks for all your replies and I will certainly be complaining about the treatment she received in A & E, particularly about the consultant at the Royal Blackburn Hospital who noted she had unusual liver results and still sent her home with a stomach bug! If he had acted on those results then she would never have suffered complete liver failure and wouldn't have had to suffer so much pain. Things could have been much worse but luckily she got the treatment and care she deserved in the end. I'll update again soon and thanks for all the replies and good wishes.
  3. Hi My wife now has a definitive diagnosis of pulmonary hypertension, the enlargement of her heart caused her liver to fail. The treatment so far has got her liver making a recovery and she is on drugs to decrease the pressure in her lungs. She is in a specialist liver unit and today she is being transferred to one of the 3 specialist heart units in the UK, the Dr's there have very specialised skills and know a lot about treating scleroderma patients. Obviously when my wife was first diagnosed we read a lot about the illness and this was the one complication we hoped would never happen. We always thought that she had Systemic rather than Diffuse (I think that's the right way round) but we must have been wrong on that score. Anyone here suffer from or know of people who suffered these complications?
  4. Hi, This is just a very quick update, I'll give you details at a later time when things have settled. My wife lost consciousness and was found to be suffering from liver failure. I'll update at a later point, she has been transferred to a specialist liver unit and is so far responding well. Thanks for your replies.
  5. Hi My wife suffers from Scleroderma, Raynaud's and Polymyositis. She is 24 and was diagnosed 7 years ago, since then we have gone on to have two children now aged 5 and 22 months. Her symptoms were under control and she only needed to see her Rheumatologist every 6 months but after the birth of our 2nd child things have spiraled out of control. She now needs a wheel chair because she gets breathless after walking a short distance, her Raynaud's has got much worse to the point that she has constantly blue feet and hands. She also has suspected heart involvement, she is now having to take Ivabrandine and asprin daily to slow her heart rate down. So far all her heart tests have come back normal, she has had ECG, Heart echo scan and a MRI of the heart itself, she now has an appointment for a heart stress test in March. So this brings me to where we are now, on Monday she started having severe sickness, it started suddenly and was accompanied by dizziness and extreme fatigue/tiredness. We thought it was a bug so I treated her at home, but she got worse to the point where she was having difficulty staying conscious or even keep fluids down. I phoned an ambulance on Wednesday and she was taken to our local A & E department, now if any of you have ever been to an A & E dept suffering with these illnesses you will know the Dr's don't know much about it and she was left in a side room and put on a drip to re hydrate her then sent home. The care was poor at best, she returned home but deteriorated further, so yesterday I took matters into my own hands as she was barely conscious, I rushed her by car to the A & E at the hospital where she receives all of her treatment (Salford Royal). She was put on oxygen and as they had all her records her treatment was much better and she was admitted straight away. My concerns are now that she as been put under the care of the gastro department and as far as I am aware her usual consultant is not even aware that she as been admitted because she is not on her usual ward. Her sickness continues even though she is now on anti sickness drugs and she has now not eaten or taken on much fluid for 6 days. She is sleeping for pretty much 23 out of 24 hours and I don't know what to do, should I demand that she gets to see her usual prof in charge of her case? Should I insist that she is moved to a different ward? I'm worried sick at this point so anyone who has any idea about or had these symptoms would be very helpful? I am also concerned that she has now been on a ward for over a day and has still not been seen by the ward doctor. Her current treatments are: Asprin, Ivabrandine, Prednisolone and she finished a 6 months intro course of Cyclophosphamide 5 weeks ago. Thanks for any advice you have.
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