Flu and Flare-up

[lfu2]

In early March I caught the flu. I completely lost my appetite. I didn't want to eat anything. On March 8th I felt so bad that I requested a home visit from the GP. She said that this year in the local community the flu seemed to be worse in the patients who had had the flu jab. She prescribed Tamiflu. This was the worst I have ever felt from the flu virus. Five days later on a slow recovery I had a GPA flare up.

I was in a sorry state. I couldn't co-ordinate my movements properly and I had a bad chest infection. Sent for GP who organised an ambulance and so to St James' Hospital. Five days of tests and drugs, and I began to feel better.

I still had a lot of phlegm on my lungs and I was continually coughing it up. In the previous weeks I had been using a Positive Expiratory Pressure (PEP) device called an 'Acapella' to help clear the phlegm. It worked after a fashion but not very deeply. While in hospital I was seen by a Physiotherapist who wanted to try another PEP device. This was a 'Pari-o-Pep' mucus device. Both these devices work on the same principle. As you blow into it, the device raises a steel ball to stop the air flow from your lungs, this allows the phlegm to drop back and then the ball releases and the air flow is restarted. This is a very quick vibrationary movement and it causes the phlegm to be dislodged and to move up the airways.

I think my Physiotherapist got a bit carried away; she kept telling me to blow harder and harder and then to cough. I started coughing and couldn't stop. It became uncontrollable. I was coughing up some phlegm, but more to the point, I had just had my lunch and I vomited. So I was uncontrollably coughing phlegm and vomiting at the same time. This went on for about five minutes before I could stop, by which time I had pulled the rib muscles in my chest on both sides, and I couldn't get a proper breath. The pain was pretty bad. The Physio made a discreet exit saying we would continue tomorrow!

The outcome of this was that I suffered from breathlessness. It feels as though a large piece of phlegm had moved up my main airway only to become lodged somewhere in my mid-chest.

Due to my 'reduced' appetite I had lost one and a half stone. I was put on a high calorie diet, but I didn't want anything. Eating for the sake of eating without pleasure is not nice.

Although my breathlessness was still there, my blood oxygen level was ok (for me) and I was discharged feeling a lot better.

During the intervening weeks until present day I have struggled with the breathlessness. I have seen an ENT surgeon with possible thoughts of stretching the trachea, but to no account. The surgeon said that with the condition of my vocal cords, no repair strategy is without a lot of risk. So no relief there. I am trying to come to terms that it could be like this for the rest of my life.

[AmyS1]

Possibly your symptoms are due to a flare of your vasculitis. Are you seen by a specialist vasculitis team?? Have you increased your medication for your vasculitis???

[lfu2 in reply to AmyS1]

Thanks for the reply. Seen the consultant; medication increased. I am getting some relief poss. from the medication but feel very 'down' thinking that this will not heal. Struggling at times, usually in middle of night when I can't get a proper breath. I have an ongoing appointment with Thoracic Dept. hopefully they can/will perform a lung wash to move the phlegm.

[AmyS1]

Contact the helpline to check re specialist vasculitis services. It may make an enormous difference to you.

[egre]

Breathing and GPA

I can empathise a lot with you and how you are feeling that you are stuck with this disease and it's issues.

I have had breathing problems since being diagnosed 3 yrs ago with gpa. I have a persistent middle lobe lung collapse and have daily bouts of coughing without bringing anything up. I do breathing exercises and use inhalers fostair and seebri.

I had my first flare up in December last and went into hospital due to breathlessness. I had steroid, antibiotic drips and also Rituximab which i am now to have 6 months.

I also have hearing problems due to fluid. I use hearing aides. I can't have t tubes due to adhesive ear drums caused by inflammation. The kidneys have been affected but are currently ok. I had to have cataracts removed due to the steroids I was taking.

I would say that having vasculitis is a traumatic experience that stays with you as there are so many symptoms too numerous to mention. The trauma is not made any easier by hospital staff who don't listen when you tell them you are so out of breath and weak you can't walk to the bathroom and need to be wheeled there. Or if you are in the surgery having to wait for 30 minutes for

A blood test that has been booked previously and you are worried about having low immunity and are hemmed in with people coughing and sneezing.

When I had the flare up it felt like I was back at square one again and that the breathing would never get back to a bearable level. However it took about 8 weeks before it did.

It's the loss of control and being dependent on medical staff who don't always understand the condition and have conflicting views about it. I've found that with the nhs although I am very grateful for It, a lot depends on 'luck' as to who you see at the particular time.

Anyway after this ramble I am sending you my best wishes for recovery and having some respite from all you are going through.

[lfu2 in reply to egre]

Thank you Egre.... you know what it's about. I can get through the days now, although the least exertion brings the breathlessness all back on again. Due to my rapid loss of weight I also lost muscle core strength. I have always done anything.... no physical job was too much and I enjoyed doing things.... now I haven't got the energy, and if I had I would be breathless with the effort. But thank you for your reply, it is comforting. lfu2

[Tony-LakeDistrict]

MPA for the last 13 years.

6 weeks ago I had the same flu problem, my wife called out after hours doc, he gave me antibiotics. But the real help came, when the lung specialist prescribed Oramorph " morphine ".

Within 24 hours I felt a lot better, not cured, but life made very much easier.

Best of luck

Tony