Getting there I hope: I am exhausted... - Lung Conditions C...

Lung Conditions Community Forum

55,059 members65,847 posts

Getting there I hope

Carnival567 profile image
4 Replies

I am exhausted this morning after a medical day yesterday! I saw my GP yesterday and told him about my ambulatory oxygen problems. He had not had any of the letters from my respiratory physician but as soon as I gave them to him he was on the ball and is going to contact the respiratory nurse's boss at Newport to get things sorted out. I also gave him an article from the European Respiratory Association which confirms that ambulatory oxygen is beneficial for people with ILD, so we make progress. Then off to the Bristol Heart Institute where I had very thorough investigations before I saw the consultant. He had been doing research on my background and had even contacted the hospital where I had heart surgery 56 years ago. Impressive, although no results. He told me that he was concerned about the enlargement of my heart's right side, which can be caused by both the lung disease and heart problems, so I am to have cardiac catheterisation to confirm pulmonary hypertension. He also said I have a hole in the heart, possibly left over from the original problem or from the ablation I had 5 years ago. Also a possible aortic aneurysm, although it may be scarring from the original surgery, so it is wait and see. He did say though that with my lung condition surgeons would be reluctant to do major surgery, but could do keyhole surgery if necessary. On the whole I was pleased that at last I seem to be getting some answers, although not necessarily the ones I would have liked. It was the second family appointment of the week as my husband saw the orthopaedic neurologist on Tuesday and they have decided that they need to do some further tests to find out where precisely his pain is coming from before they operate so he is to have lumbar injections to find out. Although his spine is not in good condition it is no worse than 18 months ago, which is a relief, as he was told originally that it would continue to decline. Having the puppy has made him walk is a good thing. Meanwhile keep trundling on!

Written by
Carnival567 profile image
Carnival567
To view profiles and participate in discussions please or .
Read more about...
4 Replies
sassy59 profile image
sassy59

Things do seem to be moving in the right direction Carnival and l wish you and your husband well. Xxxxx

Katinka46 profile image
Katinka46

Wow.... well, good to get answers and responses by people who at last are doing things. But they are not answers that anyone would want. But as I always say it is better to know what we are dealing with than to be left in a nightmare vacuum.

Love and hugs

Kate xxx

Billiejean_2 profile image
Billiejean_2

Gosh, you do have a lot to cope with Carnival, not to mention the exhaustion and stress of having to constantly fight for what you're entitled to. I hope the end of all this hassle approaching.

Sheilab123 profile image
Sheilab123

Oh dear Carnival not a good week then, but at least you are getting some answers. I was particularly interested as told I had heart failure a few weeks ago it came as quite a surprise so not really got my head round it yet. Due to see cardiologist next month so hoping I will find out more then. In the meantime as you say we must just keep trundling on! Xx

You may also like...

Dont panic.All I could think of was Corporal Jones.

proper self conscious. I rang the Respiratory Nurse from the car who told me to go home...

Update - I saw rheumologist today

especially the ILD bit being progressive “, he replied that he has had patients that have had...

AM I FINALLY GETTING THERE DUE TO MY OWN PIG HEADEDNESS AND A REFUSAL TO ‘TAKE NO FOR AN ANSWER’

email from the surgery to my hub and they were not at all busy. I received a warm welcome from...

OXYGEN LITRES INCREASED FROM 8 LITRES TO 10 LITRES

appointment with my dentist & told them im on oxygen & asked them if they had oxygen tanks on their...

getting closer to finding the real problem

(which doctor sais upper respiratory from reflux) that in turn is agrivataing my lungs I feel so...