Vasculitis UK
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Any advice or help? A difficult time since February (Vasculitis)

I am wondering if anyone else has been in a siniliar situation to my dad and any advice would be greatly appreciated.

In February 2018, my dad became ill. He is 59 and generally a fit man and always looked after himself. He hadn’t been to the doctors in over 20 years and as far as I can remember I’ve never known him to have a day off work.

He went to the doctors 3 times in a week after having flu like symptoms, they told him he had a chest infection and a UTI. He went back to the doctors and was told to go a&e because of an increased heart rate (180 bpm) he was then told he pneumonia and atrial fibrillation . He spent 2 weeks in hospital and was eventually discharged. Had a CT SCAN of his lungs as they found nodules, got the results back and they were fine. We thought all this was scary as the cancer word was mentioned but a sigh of relief and we thought he would start to feel better, how wrong was we. When Home he never got any better, had pain in his legs which the doctors kept saying it was a side effect of his heart medication. He struggled to walk far sometimes and became out of breath. Had doctors appointments and bloods taken (still waiting to hear back for these funnily enough).

Roll on to good Friday, he was having chest pains so was admitted to hospital once again, they said he had a heart attack. He was also told he had another UTI again too. He was sent for a MRI Scan and had several specialists see him. He then came out with a rash, basically blood blisters on his arm and legs. Last week we was told he had Vasculitis Granulomatosis with polyangiitis. He was transferred to another hospital on Wednesday for a kidney biopsy. Steriods were started and a form of chemotherapy. However, he has deteriorated over the weekend. There is some further damage to his heart (due to more chest pains) and he’s got really low blood pressure. He is now seeing double, his voice is quiet and he can’t hear. He’s on oxygen now too. He was transferred to critical care yesterday.

I have read about Vasculitis as prior to my dad being diagnosed it was something I’ve never heard of. It seems my dad has a lot of different problems, they can’t do the biopsy now due to his heart medication and his general condition. They are going to send him for a brain scan.

Is there anyone out there who has had all the symptoms my dad has? The renal doctor told us yesterday it is the complications with his heart that it is making him so ‘complex’ as they say, his kidneys aren’t functioning well and he can’t even feel his feet and has got pins and needles in his hands. It was so hard, seeing my active dad, not being able to stand without assistance. He’s having joint pain and it looks like the muscles are disappearing from his body. It’s just more test after test and they are still deciding on treatment. I’ve seen my dad deteriorate rapidly over the last few days and I worry how much more damage a couple more days can do.

16 Replies
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So very sorry to hear about your father.

Have you rung the vasculitis help line they are amazing and helpful and supportive.

Hope your father is soon receiving the correct treatment and starts to feel better.

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No I haven’t rang them, I will do today. Thank you

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So sorry to hear about your dad. I've got GPA, the same sort of vasculitis. Everyone is affected differently. I've had so many tests and retests. I don't know what sort of chemotherapy your dad is having but if it's cyclophosphamide, that helped me.

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Hello, yes that’s what he’s on. Did it take a while for you to start seeing any improvement on the medication? He’s also going to be having a plasma exchange which should be started today.

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The cyclophosphamide made me very sick, so it was difficult to tell initially. I had it from Feb-June last year. By April my eyes were definitely improving. By May I was able to go away for 2 nights in a hotel for a little break. By late July I went back to work on a phased return, working very part time. Hope that gives you a sense of timescales. And hope the plasma exchange is effective.

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Thank you. I just pray the plasma exchange works as not sure what they can do next.

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Nb the most important thing to do is make sure that your father is being treated by a team that is specialist in vasculitis. There are only a few hospitals that specialise in this ,most of the teaching hospitals in big cities. Call the vasculitis helpline as a matter of urgency. Nb cardiac problems can be due to vasculitis. I hope he makes a full recovery but you will need to speak up for him.

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He was transferred to a city hospital. I spoke with the renal doctor who has supported people with vascutilitis. But it seems (as we keep being told) my dads very complex as it is affecting most of his organs. He is going to be having a plasma exchange, but they are concerned about his blood pressure (it’s already low) and it will likely drop when he has that. They can’t give him too many fluids as it is putting too much pressure on his heart. I will ring the helpline today. Thank you.

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NB loss of hearing and eye sight are reversible if treated well and promply by a specialist team if this is not treated correctly it can lead to perment damage to hearing and vision.

Not every city hospital is experienced in Vasculitis. Lynn on the helpline was an ITU nurse and very helpful all at the Vasculitis helpline will help !!!

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I am sorry to hear your father's condition. I hope your father get well soon. I am just nineteen and i am suffering from leukocytoclastic vasculitis. I am having strong drugs. I lead a healthy life before affecting it. Obviously, this is a serious disease.

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It certainly is serious and horrible!

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Hi Emma

This was a previous post that I put on the site:

After 11 years of attending doctors witch increasing symptoms of allergies, rhinitis, sinusitis, asthma, loss of smell,taste and hearing I was in so much pain in my arms and legs that I presented myself at QEUH A&E dept. After several days I was diagnosed with EGPA at the age of 55. Many of my organs had been damaged including liver, spleen, left eye, nerves and muscles in my legs and right arm and hand. Above all, my heart was damaged and I had to have a defibrillator fitted to my heart. The day after it was fitted I was allowed out of hospital - 5 weeks after going in. I have been a very fit man all of my life and played tennis 3-4 times and golf1-2 times per week as well as going to gym. I found that I was very tired but,like you, keen to regain my fitness. I was off work for 6 months recuperating but this allowed me to walk and go to the gym regularly and rest appropriately. I had an 8 week phased return to work and have just started working full time. I can play tennis and golf but still can’t hold the racquet or clubs properly with my right hand. I get tired more than I used to and don’t push myself to do as much cardio exercise as as I did previously. Only now do I feel that I will get back to somewhere near my previous fitness levels despite being very positive throughout. Other people have given you good advice and I would urge you not to get down about your dads illness. Like me you now know why he has not been feeling well for a long time. I am sure that the medication will work for him as it worked for me. Good luck and good health to your dad for the future.

Harry

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Thank you Harry for sharing your previous post. It feels every day there is bad news. Today we have been told that his heart is basically damaged too much. His brain scan is showing he’s had two strokes (mild I am assuming). They want to continue with the plasma exchange if his heart can take it and mentioned a heart transplant. We are trying to stay positive, it’s just so much of emotional rollercoaster. I just want him to be able to do ‘normal things’ like pottering around in the garden and taking his dog a small walk. But I know we are very long way off that at this time. They have said he will be in hospital a long time. Thank you.

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Hello...my dad went through a similar process as your dad but he is diagnosed with Churgs Strautess condition (may not be spelt right). This was also over Easter. He had two strokes as a result of the very high white blood cell count. He had multiple problems, weak, breathless. His right arm affected from the stroke. He has cat scan, me i, bone marrow biopsey allcame back clear. He was given high dosage of steroids which are reduced weekly, he is now on week 5. He was also a fit working man prior to this , however did have copd. Are his white blood cell count high? My dad is now much better, not driving yet but is catching the bus daily and tending my garden....Like you, seeing your dad, a previous active man helpless in hospital is so emotional. I hope he gets better soon. But do ask about the white blood cells ....I actually wrote to a professor in the UK who directed me in getting a diagnosis as the hospital did not know what was wrong with him x

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It is something I will ask them. It’s so difficult for my dad. He can’t feel his feet and is so worried he will not be able to walk again. I am glad your dad is much better. It’s a horrible disease and we can do is stay positive for him. Thank you

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Hi I was diagnosed with Wegeners Granulomatosis in 2006. I was lucky I suppose took a least a month to get a diagnosis from a very good doctor who I shall ne forever grateful to. Mine started with an ear infection which didn’t clear up then I lost my hearing altogether for a few months - this was pretty scary. It recovered slightly but I suffered nerve damage so have hearings aids. I also had very bad bloodshot eyes, pain in legs, loss of feeling in one foot, severe night sweats and just generally feeling ill. The ear pain was the worst. I was started on high dose steroids then had 3 months of cyclophosphamide, several ear ops scans X-rays etc. Granulomas on lungs cleared up too. This was 12 years ago no end I had a relapse in 2016 so went back on steroids and methotrexate. I still can’t believe how ill I was looking back now but I am working and making the most of life. I am 43 and will no doubt suffer with this for the rest of my life. I hope your dad gets the right treatment it’s a very bad disease and very difficult to treat.

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