Have respiratory consultant but how pro active should I be in seeking specialist treatment

[Trow]

Have pulmonary fibrosis pulmonary hypertension O2 sats 80% pulse at rest 90 to 105 as soon as I move O2 sats drop to low 70 % pulse up to 130 breathless have ambulatory O2 set at level. 2 but sats remain at low 80 s pulse 130 + very very breathless still waiting for appointment with specialist hypertension unit no appointment with fibrosis clinic 15 months from diagnosis where do I go from here

[Oshgosh]

Perhapsyoucouldgetrhe phone number of the hypertension unit,ask to speak to secretary,try to find out what’s happening with your referral. Tell them your symptoms.Do the same thing with the fibrosis clinic.

If you don’t get any where,try seeking GP advice.

Ihope this helps.

It’s horrid having to wait so long.

[Hidden]

I would say your respiratory consultant should have everything covered but if you feel you should be seeing a different specialising consultant, maybe phone the BLF helpline and see what they may suggest. Or you could ask the respiratory consultant when you see him or her if you need to see another specialist. Do mention details with your 02 sats fluctuations.

BLF pages here:-

blf.org.uk/search/site/pulm...

and here:-

blf.org.uk/search/site/pulm...

Hope you get some clarity on your queries.

Best wishes BK

[Dylando]

Hi I have ipf and my oxygen levels drop like this.My ambulatory 02. is at 4lpm but I need 6 Lpm when moving about.I would speak to your respiratory nurses and explain your sat levels and they should advise you on o2 dose age to help your situation

[Aingeful]

I have IPF and my consultant appointments are every six months. If I was worrying ,I would ring my GP to see if it was necessary to be seen sooner.They don't what is happening unless you tell them.

[Runrig01]

I’m new to PF and still waiting to see specialist on 5th May. My understanding from someone working on the BLF site, is if your FVC is <80% you should automatically be referred to an ILD clinic, which they list on their website. They then share care with your local consultant. Hope you get it resolved

[Trow in reply to Runrig01]

I am in catch 22 situation low O2 sats breathless caused by pulmonary hypertension which was caused by pulmonary fibrosis but my FVC is > than 80% so no referal to IDL At this time there does not seem to be approved drugs to treat pulmonary hypertension plus pulmonary fibrosis .Respiratory consultant has made a request to Derriford hypertension unit so I am waiting and hoping thank you for your reply