Despair at not being helped

[Scottiedottie]

Long story. Diagnosed mild bronchiectasis 2010. Regular OP follow up till 2017 in local hospital and regional immunology clinic till 2021. Also have IgA deficiency and auto immune arthritis. Exacerbation since June 2023 and still coughing loads sputum every day. Sputum tests have shown lots of infection including MRSA. I suggested being referred to resp consultant and was seen in August but he didn't even examine me. Referred back to immunology for management...appointment in November. Too many cock ups with GP surgery to mention but my point in writing is I've had no spirometry, no management plan, no rescue meds etc. No one has even done my peak flow (recently found an old one and it's 230 every day) Am I right to feel so frustrated and angry?

[Mooka]

Yes you are right. I have vasculitis an autoimmune disease, Mild Bronchiectasis and secondary immune deficiency. I’m seen at a specialist centre for vasculitis and see a respiratory consultant in the clinic. I also have regular phone calls with immunology I have lung function tests usually once per year although more often now as I had some infections. I know I’m really lucky in the care I receive but yours is really poor. Perhaps you need a specialist in Bronchiectasis. Not all respiratory docs are knowledgeable about it.

[Dottie11 in reply to Mooka]

May I asked if you use a Nebuliser? My Bronchiectasis is mild. Plus the Secondary Immune deficiency, Sjogrens and Vasculitis. My consultant has offered me one but I am not sure. I only take Antibiotic cover at Winter time at the moment.

[Mooka in reply to Dottie11]

I am also diagnosed as mild. However because I’m immune suppressed if I get an infection I get very ill if I don’t get antibiotics quickly. I have used a nebuliser for the past six years because I had pseudomonas infections and ciproflaxin wasn’t effective anymore. I nebulise colomycin, an antibiotic, sabutomol to stop the bronchospasm caused by colomycin . I also have budesnide as I have high nitrate oxide levels. I had a two week course of iv antibiotics to kill off any bugs and the nebuliser is to keep the numbers down. If you are having a lot of infections it may be worth considering a nebuliser. I went for four years without an infection then I got pneumonia just before Xmas. I’ve had a couple of infections since. Probably iv antibiotics first would help you. I do mine at home.

[Dottie11 in reply to Mooka]

Thank you this is so helpful. I do not find many people with my combination. I ended up at my Gp yesterday as I have an Ear infection. I get them from time to time. Sinus is awful and all joined up. If I may could you just answer one more question. Did you find nebuliser helped these areas also? You detailed information is wonderful. The Pneumonia is awful. I hope you have recovered well. Great you were four years without an infection. Take care.

[Mooka in reply to Dottie11]

I’m happy to share. I also had sinus problems. It was during my last FESS operation on my sinuses that the pseudomonas was found. When I first had the nebuliser I used the face mask and was breathing in through my nose. I had to give up on the mask as it was making my face itch. A lot of my infections started in my sinuses. My sinuses are far better but that’s probably due to the last op. I had ct scan which showed my sinuses were narrowed. Maybe you could trial the nebuliser for a while and see if it helps? I hope your ear infection gets better quickly.

[Dottie11 in reply to Mooka]

Thank you Mooka. This is so positive to read re sinus struggles. Having more information has been really helpful. I am off to rest my Ears. Take care.

[Dottie11 in reply to Mooka]

I forgot to ask how do you nebulise without a mask ? I have Sjogrens and struggle with my salivary glands. Anything pressing on my face hurts those glands and jaw. Plus sinus facial pain and teeth very often. Thank you.

[Mooka in reply to Dottie11]

I use the mouthpiece that comes with the nebuliser chamber. I preferred the face mask but the itching on my face was awful. I think it’s the budesnide that causes it. You really do have so much going on. I can see the nebuliser could be a problem whichever method you use. My respiratory doc won’t let me stop the nebuliser. Do you use a neilmed sinus rinse? ENT doctors always recommend that if you have a lot of sinus problem. Sterimar helps too. I hope your ear infection is better now. My MDT are always concerned when I have a lot of infections as it could cause a flare. I don’t know anything about the type of vasculitis that you have.

[Dottie11 in reply to Mooka]

I am on Optimize as of yesterday. Added to help. I will get there eventually. It has been a few years since been this bad. Thank you for asking and for your help and quick response. I have been given liquid Carbocisteine on acute script and find it much better than the capsule type. I have used Sterimar for my sinus but I have found sometimes this also sets my ear pain off. MDT ?

[Mooka in reply to Dottie11]

Sorry multi discipline team. I see a specialist vasculitis doctor, a respiratory doctor who is in the same clinic and immunologist. I used to see an ENT doctor who specialises in vasculitis but I’ve been discharged from him.

[Dottie11 in reply to Mooka]

Of course. This is what I dream of. I am between all different health boards. Called fragmented care. The computers do not join up. I cannot keep up with trying to carry all the letters and information around. No consultants speak to the others. I wears me out . I am not complaining as this is due to where I live and have to accept it or move. Thank you so much . Wonderful to hear of your care and it is great to know it does exist. My doctors do the best they can and work with what they have got. Have a good day.

[Mooka in reply to Dottie11]

I am so lucky in my care but I do have a 150 mile round journey for it. I have a portal where all my letters, results, and appointments are stored. Access via the web or app. Handy if I get admitted to my local hospital We can only dream that this will be the norm for everyone one day

[Dottie11 in reply to Mooka]

I am really pleased for you. It must be hard going with the long journey but worth it. Yes I have a friend at Addenbrooks who told me about the Portal. we don't have that either. Take care.

[Scottiedottie in reply to Dottie11]

No nebuliser. Just started Fostair Inhaler.

[Dottie11 in reply to Scottiedottie]

Thank you.

[Dottie11]

I have similar diagnosis to you and Mooka. I think much depends on where you live. Wishing you the very best and good luck.

[Mooka in reply to Dottie11]

it’s definitely a postcode lottery. I moved my care to a specialist centre for vasculitis. I now have an excellent team but also a 150 mile round trip to get there. I hope you are being well looked after.

[Dottie11 in reply to Mooka]

Mine is a mixed bag. Some great and then !!!We think the best solution will be moving. Thank you and take care.

[Patk1]

Get anotherr specimen put inso u know kow what's going on now and appointment wth gp.Keep a record of Yr obs.

Ru familiar with lung clearance techniques? These r essential self care for bronchiectasis + u can ask to be seen by respiratory physio who will advice u

[Scottiedottie in reply to Patk1]

I've been doing lung clearance following YouTube. Was referred fir chest physio in August but not had appointment yet

[Patk1 in reply to Scottiedottie]

Lung physio r usually v gd.as long as Yr getting it up.x

[Patk1]

Just a thought,worth ringing specialists secretary to check the referral HAS b done & how long is the waiting list x

[Scottiedottie in reply to Patk1]

I rang 10 days ago to ask about referral for chest physio. Sent message to GP 3 weeks ago about spirometry.

[Osha]

Hello scottiedotti. I like your name as I am Scottish! I have given up contacting GP. I have been very fortunate to see a broncheactesis consultant at UCLH. Also had an appointment with respiratory nurse who I’m able to contact with any questions I have. At least I can talk to someone who knows what I am talking about Your first thing to do is to ask your doctor to refer you to a broncheactesis consultant at the hospital you choose then you will be on the road to receiving the best help. Good luck

[Osha in reply to Osha]

After you’ve done that you just have to keep pushing. I think you’ve already been advised to contact the consultant secretary