Who to turn to?

[mauschen]

Hi,

I need advice on who to turn to next.

My recent bodyplesmography tests continue to reveal restiction as well as obstruction in my lungs. Currently, I am being treated for mixed form asthma, sleep apnoea due to significatly elevated AHI due to sleep disordered breathing. I know that this is an umbrella term but my consultant seems reluctant to break it down further. Other doctors have said that my brain is not providing the signal to my respiratiry muscles.

CPAP is definatetly helping my sleep apnoea however my concern is more about my lung function tests which continously demonstrate restriction. I asked my respiratory consultant ( a young professor) if I have any other lung disease other than asthma and he responded after much deliberation with an unconfident sounding no.

Where does that leave me, the PFT results suggests otherwise ... Any suggestions?

[sassy59]

A 2nd opinion to which you are entitled mauschen. Ask if there is anyone else you can speak to. Good luck and hope things improve for you. Xxxxx

[Nanaeal]

Good Morning Mauschcen, sorry you're having such a tough and worrying time. I don't have any advise, except to agree with sassy, just wanted to send positive thoughts & prayers Nan

[Katinka46]

Hmmmmm..... very unsatisfactory. There are conditions that can present as both obstructive and restrictive. Have you got the numbers for your PFTs? There are some knowledgeable chaps and chapesses here.

Push for more clarification.

K

[mauschen]

I have tried to copy and paste results but it doesn't work therefore, I have typed them in in the format of what they should be/ what the actual value is. Hope you can understand.

FRC should be 2.64L /actual 1.74

RV 1.81L/0.86L

TLC 4.77L/3.25L

RV%TLC 38.34%/26.59%

VC 2.81L/2.38

FVC IN 2.81L/2.38L

FVC 2.72L/2.11L

FEV1 2.30L/1.89

FEV1%VC Max 78.27%/79.27%

PEF 5.98L/s /6.29 L/s

MEF 75 5.33 /6.29

MEF 50 3.66/3.48

MEF 25 1.37/0.44

DLCO 7.55 mmol/min/kPa / 5.20 mmol/min/kPa

DLCOc 7.55 mmol/min/kPa / 5.04 mmol/min/kPa

FRC 2.64L/2.40L

RV 1.81L/1.53L

pH 7.40/7.43

a.CO2 partial pressure 38.03 mmHg/40.40 mmHg

a.O2 partial pressure 77.93 mmHg/79.90 mmHg

a.O2 saturation 98%/97.30%

[mauschen]

Is there anyone who can shed light on my lung function tests. I am not asking for medical advice, I am only asking if someone else interprets the results the same way that I do.

[mrsmummy in reply to mauschen]

Try the helpline - 03000 030 555. Available if you are in the UK. Mon- Fri during office hours.

[mauschen in reply to mrsmummy]

I am working in continental Europe, only in the UK at the weekends.

The Dr letter states middle grad restriktive ventilation disturbance without central obstruction plus middle grad gas exchange dysfunction. However, no concrete diagnosis, only these observations.

[mrsmummy in reply to mauschen]

Perhaps try ringing the doctor to ask for clarification as it would be unsafe to rely on a layman's interpretation.

[mauschen in reply to mrsmummy]

I did. I asked him directly if I have any other lung disease apart from my mixed form asthma, which incidentally is stable at the moment. He took a deep breath, long pause then unconfidently said no.

[mrsmummy in reply to mauschen]

Yes, I saw that. But if you still have questions he is the only one who can answer them with any degree of certainty as he has all of your test results. Good luck with it.

[mauschen in reply to mrsmummy]

I phoned his secretary and asked if the dr could phone me to clarify the outcome of my lung function test results.

The bottom line is that he thinks I have IPF from a rheumatic cause. When I asked why he didn't tell me, he said that I would need a high resolution CT scan to confirm the diagnosis and he felt that the exposure to radiation would out way the benefits of telling me his suspicions as my moderate restrictive lung condition had not altered in the past 12 months. I am very angry! It is my body and I make it very clear that I want to know what's going on with it. He was concerned that it would cause me anxiety ... I already have heart failure, is there a higher level of anxiety with other terminal illnesses? In my case it is now a question of which one gets me first.

Now I have lost trust in this professor, I thought I was dealing with the best (I have no concerns about his knowledge base) but now I realise that I am just a number. Sparing the CT scan costs in my opinion has nothing to do with sparing me anxiety. I was already anxious reading the results and being told that I didn't have any other lung disease other than asthma.

My blood is boiling,,,

[mauschen]

Totally confused now!

I had a high resolution CT lung scan on 16/08/17 and results consultation yesterday.

Firstly, I found it strange that the HRCT took less than 2 minutes ... Is this normal and, I was allowed to keep my metal framed glasses on?

Secondly, the doctor denied telling me anything about IPF on the phone and could not recall why I was having the CT scan. He said that I do not have IPF or any other lung dusease apart from asthma. While this is excellent news, I asked him why my PFT continually demonstrate moderate restrictive and obstructive issues. He said my lungs are small with a total capacity of approx, 5 litres but I am only using 50% of that capacity. When I asked why his response was "I don't know" , that not all questions are able to be answered by medical science. I was dumb fiunded at this reply and found it hard to maintain my composure. He said that my breathlessness on slightest excertion is multifactoral and that my oxygen saturation levels 88-95% were borderline and didn't warrant further investigation as they have improved since starting CPAP.

Where do I go from here?

[mauschen]

mrsmummy, I realise now that I should have created a new post instead of adding to a post 3 months old however, I need some advice. Can you or anyone help?

[mrsmummy in reply to mauschen]

mauschen , I am really sorry that your professor has let you down so badly and I do not blame you for losing confidence in him. I am assuming this is your European doctor? Is there an alternative professional you can consult with for a second opinion? I have no medical knowledge whatsoever. I remember that you are only in the UK at weekends but I think if I were you I would plan a longer break here and garner a second opinion at a good teaching hospital that has thoracic specialists. If you can afford a private consultation maybe you could forward your test and CT results for consideration? I am sorry I cannot help you any further. Good luck with it all.

[mauschen in reply to mrsmummy]

It was cruel to let me think for a few weeks that I had pulmonary fibrosis, during this time I never shut an eye.

I already have an appointment at the cardiac centre organised for Tuesday. This appointment was made in April after the professor told me that I didn't have any other lung disease apart from asthma. I therefore assumed my breathlessness must be related to my diastolic heart failure (NYHA 2) which is why the cardiologist appointment was made. Now I don't know what to think or who to turn to. Everytime I look at my pulmonary function tests I know that something is wrong and I know it's not my asthma.

A while ago I spoke to my UK GP about a referal to a respiratory specialist but was refused. In early 2015 when I was more often in the UK, I asked for a cardiologist referal because my body was full of fluid, I had chest pain on slightest exertion and was extremely breathless even at rest. She sent a letter to a cardiologist which I didn't see but she gave me a copy of the response. The response stated that while I had a very high risk profile, at this point in time a cardiology referal was not necessary. Two months later I was hospitalised in Germany for cardiac decompensation and diagnosed with heart failure (preserved ejection fraction).

I don't think it matters which side of the water I am on.

People move around the world these days yet the health services still but people in a box. My GP obviously doesn't want to spend money on me and is also not amenable to looking at translated copies of German reports. I did ask her about a private consultation and she told me this must be done via my GP. As all my tests were conducted in Germany, she said she couldn't make a private referal.

The cardiologists will probably not be interested in my lungs but hey ho, I will go along and see what they have to say. It won't be a wasted journey either way as my annual cardiac review is due anyway.

[mrsmummy in reply to mauschen]

If you do not get any more replies then do consider starting a new post, perhaps including a link to this one as background information?