1 step forward and 5 back!

Hi fellow forum members,a few of you will recognise me, I have been offline for a few weeks. Mum is desperately poorly now, she was admitted to hospital a month ago with breathing problems and excessive fluid build up, let alone her whole body now being covered in hard skin, mums kidneys are not happy at all and my brother and I had to do a bit of kicking and screaming to get mum better treatment, seeing her rocking back and forth and crying her eyes out was the last straw, boy did we have to shout loudly! Mum is now in the royal free hospital in London, she was taken by ambulance last Thursday, I believe rheumatology are aware of her being there but she is in the acute kidney unit for now, they want to get her kidneys feeling better before the scleroderma can be tackled, I just don't know how mum can come back from this but I do believe that the royal free is one of the best. It is a logistical nightmare and with a 74 year old dad on his own here in Bournemouth, Dorset it is a real heart wrench. Bournemouth hospital admitted they didn't know what to try and treat next so for me the only choice was to get mum out of there. I think mum is due to have a kidney biopsy to determine the proper cause of her poorly kidneys. We are visiting once a week with dad and trying to get other members of the family to visit and keep her spirits up whenever we can. I do hope mum can be given a reasonable quality of life, I guess if anyone can then london can! We only ask for a reasonably pain free life and for mum to smile again, she doesn't need to do the waltz or samba anymore, just a smile and a warm comfy feeling at home. Thank you so much for reading. X

10 Replies

  • How brave you all are and what courage you have shown your mum. I thank you for sharing this with us. I hope that there is improvement with your mum soon.

  • From what I have heard the Royal Free is the place to be. Good on you for insisting she is shifted. Best of luck to you all.

  • How very hard for you and your family. I hope your Mum gets to smile again soon. She is in the best possible place. Good for you for shouting.

  • I'm so sorry to hear about your poor mum, domayh. She really is in the best place, as the Royal Free is the leading hospital for scleroderma - in fact, I was there today for drug monitoring, and a blood test! Do let us know how it goes, and good luck.

  • Thank you so much for bringing us up to date when you must have so much to think about. I'm sorry the news isn't any better but at least she is now in a hospital where the medics know about scleroderma. You have certainly done everything you could & I have been full of admiration for you & your family for the care & concern you have shown your Mum over the last months. Good luck to you all.

  • Try to see Professor Denton at the Royal Free, he is the top Scleroderma man. I wish you, your mum and your whole family all the very best. x

  • Hi AMDP, thank you for your reply. Mum is currently under the care of Professor Denton so it seems that is very good news for us. Poor Mum, she is now dealing with a lung and bowel infection so she is on mega strong doses of antibiotics. I cannot think of anything else for her to get so hopefully we might get some more positive news, I am taking my father to hospital on Christmas Day, it will be a different kind of day but with young children I will try and give them Christmas when we get back. Mums skin is beyond belief right now and so whatever they put her on next we will be hoping and praying that it has some effect, the specialists were so surprised that in the 11 weeks since diagnosis that mum was never given a treatment and care plan, it seems to me that it has all been guess work here in Bournemouth so far! Thank you for your feedback, it means so much to me. X

  • Hi Sparkles, It is great your mum is seeing Prof D, he is the best. If it helps the drugs I'm on are Leflunomide 20mg a day and Golimumab 100 mg self injected once a month. I don't know what your mum has tried but I've tried rather a lot of different things and these seem to be helping me more than anything else I've tried. I live in the wilds of Cornwall so I understand your frustration and it took almost three years for me to get a proper diagnosis and for that diagnosis I had to go out of county. My daughter is still a bit in denial that I am even sick, I think she simply doesn't want to accept it. You are doing the best you can and that is all anybody ask of you. All the best, Ax

  • Hi again AMDP, it is really helpful to hear which medication you are on as I can look out for them when I find out mums new treatment. In the short 11 weeks or so since mums diagnosis she has already been on, methotrexate, cyclophosphamide and hydroxychloroquine, all of which made her extremely ill and of course at least 2 of those upset her kidneys so much. We managed to get to see her on Sunday, she promised us that she is not depressed as we were worried about her low mind set and tears, the hospital are aware of our fears with this. I am sure we will get the call one day to say mum can come home,I fully appreciate that they cannot have mum sat in the hospital while the drugs take effect,there comes my next worry, I am not afraid to admit that I shall be so nervous of mum being away from the safety net that is the London free hospital! I know she is too poorly with infections to come home at the moment but I know the antibiotics will work soon and then it is a case of getting on with managing the scleroderma. Without being able to wash,dress or even shuffle around much it fills me with fear although I constantly gain my strength from the fact that the medication will hopefully suit and work one day. It seems to me that mums hands and the whole of both of her legs are the most severely affected at present, she cannot bend her legs at all where they are so raw, hard and heavy. Thank you for reading, this forum is a constant comfort to me. X

  • Take one step at a time. You are experiencing a terrible situation but remember, even when she comes home, she will only be a phone call from help. Nobody will leave your mam to cope until she is able to I am sure.

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