Soo Confused Now?

[kirsty72]

I came back from Thailand some 5 years ago now, and within 2 days on being home, I developed SOB etc. Went to the GP who sent me to the hospital, and there I stayed for a week. I was checked for blood clots, infectious diseases, tropical diseases etc etc, but nothing came back with any clues as to what was going on.

I have always been asthmatic, and was taking ventolin when required etc.

Since leaving the hospital those 5 years ago, I was referred to the Respiratory Team at the Royal Surrey in Guildford. My consultant was a Mr. McCallister who I was led to beleive, was an expert in his field.

I had seen him every 6 weeks for nearly 3 years, tried different medications etc, (guinea pig) x-rays always came back clear, and in the end I think he thought I was a hypochondriac.

I saw a different consultant on one occasion who said, "Have you had a CT scan?"

No, I replied?

Oh, well I think that would be a better idea, just to see a bit more detail to find out what's going on. said the consultant.

I was booked in, only to get my results 6 weeks later at my next routine appointment.

Apparently I had Bronchiectasis. He showed me the CT scan to point it out, but really it meant nothing to me.

So, I finally had a diagnosis.

That took them 3 years to work that out. Cheers Mr McCallister!!

ANYWAY, I have since moved out of the Royal Surrey catchment area, now in Frimley Park, Camberley area.

I had a severe asthma attack in December last year, and spent another week in the Frimley Park Hospital.

I had to fill in a form with all my meds I was taking, and what conditions I had been diagnosed with.

Obviously Bronchiectasis was on that form.

After that hospital visit, again I was referred to their clinic.

I had a couple of appointments with the resp doctor, who did various tests that had never been done at the Royal Surrey. I was tested for Cystic Fibrosis, had varying blood tests to determine how I might have caught Bronchiectasis etc etc. He checked all the medication I was taking etc etc.

However, after all of that, he requested my CT scan from the Royal Surrey to determine where the Bronchiectasis is.

The Royal Surrey took 6 months to send this CT scan to Frimley Park!!

My new doctor at the Frimley hospital did not want me to have anymore radiation due to the risks involved, hence why I didn't have another CT scan at Frimley Park.

Anyway, I have just received a letter from my new doctor to tell me that he and his radiologist have looked at the CT scan from the Royal Surrey, and can find NO evidence of Bronchiectasis at all???!!!

My new doctor feels that I have uncontrollable asthma instead, and have to wait for my next appointment to rejig some meds.I am 42, and for the past 5 years I have been a Guinea Pig.

I AM SOOOO CROSSSSS!!!!!

I don't know what to do or think anymore!!

Can someone please help me or advise me on what my next steps are?

I am so sorry for the rant, but I thought it would be good if you knew the ins and outs, before giving me sensible advice!!

[Hidden]

OMG how dreadful! I cant offer you any advise I am afraid I look after my husband who has severe COPD. The only thing I would suggest is that you ring the BLF helpline (click on the red balloon in the corner) and ask their advise. The very best of luck, TAD xx

[longlungs]

Hi Kirsty72 welcome to our friendly site,nice to meet you.I have to say I agree with Tadaw give the blf a ring ,also perhaps you could ask for a referral to the Royal Brompton hospital which I understand to be leaders in the field of all things to do with heart and lungs.I too would be so very cross and very frustrated.Goodluck and please keep in touch and let us know how everything goes? Janexx

[Bevvy]

I am hoping to move in the next 2 months. The main worry I have is changing GP. I told my GP this and she said nothing should change because my diagnosis and meds are all long established. But your story reminds me why I am worried!

May well keep quite about move for a while before changing GP. I have such an excellent GP who sees me every 2-3 weeks just to keep a check on me.

Just a warning I went to Royal Brompton for 3 years and never got anywhere with them. My friends son was with them all his childhood. He changed hospital when they moved and discovered at 22 years he has CF not asthma!

So much seems to depend on the doctor you see!

[kirsty72 in reply to Bevvy]

OMG that's a dreadful story too about your friends son!!

I would keep quiet about moving too if your doctor is a good one. Are you moving far away from them? Or do you think you could still move and carry on with them?

x

[Bevvy]

No I am moving to another London borough so miles from GP. I THINK from October new rules mean you can have GP anywhere but not too sure! Is a massive downer on what should be a positive move. Am going to be near good friends. Moving to small ground floor 2 bed flat. Which is good because am struggling with stairs in my house and just looking after it (even with a cleaner and help in the garden). So LOTS to be positive about but am worried about changing GP.....

[kirsty72 in reply to Bevvy]

I haven't heard of the new rules yet, but that would be great!! At least you can have a personal appointment rather than someone who really can't be bothered to read all your notes!!

There are definately lots of positives to look forward to, and who knows, you might actually find a doctor who is a professional in the respiratory tract field. I would perhaps try an emergency appointment with your new local doctor. Just say your visiting friends and are too far away from your own GP, and see how and what you think of them/surroundings etc. If they are crap, then try and stay with your previous GP. xx

[Bevvy]

Good idea. Thanks

[peege]

I'm horrified by both your stories.

I too wonder if my diagnosis is correct but at least I saw my ct scan and it looked good apart from bits of damage. Long story.

I'm also worrying about my impending move and losing my GP. I'm in SW London and will have to move out of my home town grrr. I'm thinking of doing one of those postal redirection schemes with the post office so I can just continue going to my lovely GP practice, not telling them I've moved.

Wishing you the best, Peeg

[brooksju]

How awful for you to have to experience such poor diagnosis and our lives are in their hands so to speak, I can only ditto what Tadaw has advised, BFL are the best people for advice for you, good luck, hope you can get things sorted out, take care.

Jude