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Referral to Papworth


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#1 jayfi

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Posted 17 July 2012 - 04:17 AM

Hello,
I haven't posted on here before although I have "lurked" and read with interest many of the posts. I have had a diagnosis of limited scleroderma for just over 4 years. My main problem has always been the Raynaud's and aching joints for which I have medication. Recently I have also developed heartburn, for which the consultant has prescribed omeprazole.

Every year I have had an echocardiogram and lung function tests, which have come back fine, although the gas transfer part of my lung function has been a little lower than normal. This year I have had a change of consultant as mine has retired. I had my lung function and echocardiogram as normal recently and the lady who did the lung function said that the gas transfer element was down a little more again. Yesterday I received a call from my general practitioner surgery telling me the consultant has asked for me to be referred to Papworth for further testing in relation to my lung function tests, with specific reference to pulmonary hypertension.

Suddenly a condition that was manageable seems so much more worrying and I feel out of control. The general practitioner wasn't able to give me much information. I will be phoned by someone from Papworth next week who will then decide what they want to do next - more tests or a consultant appointment. Has anyone been through this before? Can you give me any idea of what they will ask in the telephone consultation? What sort of questions should I be asking?

Any advice or reassurance would be most welcome. I know from what I have read that you are a knowledgeable and helpful group. Thank you in advance.

J

#2 Joelf

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Posted 17 July 2012 - 08:26 AM

Hi Jayfi,

Welcome to these forums and I'm very glad that you've decided to post.

I'm sorry to hear that you've now got concerns about Pulmonary Hypertension. There are many similarities in your diagnosis to mine, although thankfully I do not have PH. Like you, I have limited Scleroderma with lung involvement, Raynaud's, aching joints and I'm also taking omeprazole. I can readily understand your concerns and I would emphasise that although I enjoy telling my general practitioner how to do her job, I have no actual medical training, but perhaps it may be that your new consultant has referred you to Papworth in order to determine whether or not you do have PH. An ECHO can show a build up of pressure in the right heart ventricle, but generally the most effective way to test for PH is a right heart catheterisation, so possibly they may suggest doing that test. We also have links to PH Secondary to Pulmonary Fibrosis and Pulmonary Hypertension Diagnosis which I hope you'll find helpful and interesting. This may provide you with information with which you can ask the consultant from Papworth when they phone you next week.

I know it's very easy for me to say "try not to worry too much" when you're obviously very concerned but until you hear from the Papworth consultant, perhaps you could try not to focus too much on the possiblity of PH. We do have many other members who suffer with PH and I'm sure they'll be able to give you some first hand advice. Do please post again when you get your Papworth appointment and also let us know how you get on with it.

Kind regards,

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#3 Amanda Thorpe

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Posted 18 July 2012 - 04:53 AM

Hello Jayfi

Welcome to the forums. look at it from this point of view, you have a team of doctors that are on the ball and want to check out every possible symptom to make sure it's nothing serious. No one has said you have or will have pulmonary hypertension but have a look at our video anyway. As it explains right heart catheterisation is the only way pulmonary hypertension can actually be diagnosed.

There's no chance of my general practitioner surgery ever doing any such thing in response to anything so I have to rely on the Royal Free for everything. If you did turn out to have pulmonary hypertension you at least know all the doctors dealing with you are on the ball. Foe many people here they don't have that and have to fight not only the disease but to get good care.

Take care and keep us posted please.
Amanda Thorpe
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#4 jayfi

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Posted 24 July 2012 - 09:46 AM

Thank you for the responses, and kind and pragmatic words. It was just what I needed. I have had the appointment through form Papworth for the middle of August. They are going to repeat the lung function tests, and do a chest xray, then talk through the results with me, before deciding the next course of action. I feel a lot calmer now and will wait to see what the appointment brings. I have also had a copy of my consultant's letter, which very much gives the impression that these are precautionary measures.
I will let you all know how I get on.
Thank you again
Jane

#5 jayfi

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Posted 23 August 2012 - 10:16 AM

Hello there
I have had my appointment this afternoon. It all went very well. The consultant was very positive and my lung functions had improved slightly as well. He doesn't think that it is pulmonary hypertension, but wants me to see a specialist in pulmonary hypertension at Papworth as well and was very much of the opinion that it was better to keep an eye on the situation bearing in mind my diagnosis. I feel much happier about the whole situation and will keep you updated when I see the specialist.
Thanks again for the sound advice.
Jane

#6 Joelf

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Posted 23 August 2012 - 01:22 PM

Hi Jane,

I'm very glad to hear that your appointment went well this afternoon and that there is no immediate problem due to pulmonary hypertension. It's always a good idea to monitor the situation if only for your piece of mind and hopefully the position won't deteriorate; but if it does, you know now that you're in good hands and can have confidence in your consultant, which I always think is a big bonus.

Do keep us posted and let us know how you get on when you see your specialist.

Kind regards,

Jo Frowde
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#7 Amanda Thorpe

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Posted 24 August 2012 - 02:00 PM

Hello Jane

Marvellous! Having expert medical care is half the battle. Marvellous again on the news about no pulmonary hypertension and that they're monitoring you closely. I hope that you feel reassured and cared for.

Take care and keep posting.
Amanda Thorpe
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#8 jayfi

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Posted 14 October 2012 - 01:36 PM

Hello again!

Over the last couple of weeks I've had two more appointments at Papworth investigating the possibility of pulmonary hypertension. I've had an ECG, CT chest scan, a walk test and appointment with a consultant. The good news is that he confirmed that I haven't got pulmonary hypertension, which I am very relieved about. The consultant went through my results very thoroughly and spent a long time talking me through what they meant as well as asking me lots of other questions about my health.
My CT scan has shown up some pulmonary aspiration, and damage caused to my lungs by this, which was proabably the reason for the previous lower lung function results which caused the referral. The damage seems to have been caused by my problems with indigestion/acid reflux, so the consultant has suggested some further medication to help with this. I have also been looking more closely into dietary/lifestyle changes I can make to help the problem. It seems that I will have to give up my usual black coffee, which will take some getting used to and cut down on wine, fizzy drinks and orange juice. I am going to start keeping a food diary to try to spot other foods that cause particular problems.
All in all a far better result than I was anticipating and although I will have to make some changes in my life, the future looks far brighter than I had initially thought.
Thanks for everyone's support.
Jane

#9 Joelf

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Posted 14 October 2012 - 11:54 PM

Hi Jane,

It's certainly good news that you've had such a positive consultation and appointments at Papworth and now at least you know the score and can organise yourself accordingly.

I also take Omeprazole for reflux even though I have no immediate problem with gut involvement, as my consultants warned of any reflux making my lung involvement worse. Just a precaution, really; although my liver hasn't thanked me for giving it any more medication to deal with! ;)

I'm very pleased that you're feeling happier about your prognosis of Scleroderma and long may you continue to do well! :)

Kind regards,

Jo Frowde
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#10 Amanda Thorpe

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Posted 15 October 2012 - 07:49 AM

Hello Jane

Marvellous news and thank you for sharing! It's important for everyone to hear good news I think, lifts the spirit, and I am perfectly happy to enjoy yours in the absence of any of my own!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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