Trying to get an accurate diagnosis
Posted , 9 users are following.
My partner has been ill for coming up on 4month. He's 29 non smoker non drinker. Works every hour for our family but unfortunately after a bad cold he was sent for further ct scans etc. After oxygen levels dropping to a low of 83 he was admitted to hospital for 2 weeks. He had blood tests every day and after talks of sarcoidosis he then had a small nose biopsy and a bronchoscopy of the lungs taking away 2 small parts. We were very hopeful this would give us a definite answer but unfortunately we were told it wasn't enough. He has been started on 8 steroid tablets every morning for 8 weeks with the talks of an open lung biopsy. As a family we are really struggling and as a partner I feel I'm not understanding as much as I should. Has anyone had this uncertainty before? Also has anyone been on the steroids and noticed a difference. I really enjoy this forum and although I am not the one with the health problems it does give me hope that one day our family can go back to normal. Thank you
0 likes, 31 replies
GAB85 shelby92952
Posted
Sorry to hear about your partners health problems.
I am in a similar situation to your partner. I have been suffering with shortness of breath (SOB), a tight chest, pain in my hands and constant coughing for around 4 months.
I had bloods, CT, X-Ray, Sputum, lung capacity tests and an echocardiogram then was admitted to hospital due to low o2 levels. Since I have been told it is suspected Sarcoidosis but have yet to have a confirmed diagnosis (I have my biopsy in 3 weeks to try to get a confirmation). So I share your uncertainty.
When you mention a bronchoscopy, was this an Endobronchial Ultrasound Bronchoscopy (EBUS)? When I was in hospital I was told by the doctor that I would need an open lung biopsy rather than an EBUS but since being sent home I have had an appointment through for the EBUS.
At Good Hope Hospital (Heart Of England) they discussed my case in a monthly meeting with specialists linked to Interstitial Lung Diseases, do you know if your partners scans/blood/biopsy results have been reviewed in one of these sort of meetings? It may well be that it was in this meeting that the choice for me to have an EBUS rather than open lung was made.
I was advised on this site to keep a log of how I was feeling, new symptoms / changes and questions that I think of to ask the doctor that randomly spring to mind over the weeks. I would strongly recommend your partner do the same if they are not already.
I have been on Prednisolone (40mg, 8 Tables, tapering down by 10mg each fortnight) for just over a month now and only in the last two days that I am thinking I may be seeing some improvements to my SOB rather than just negative side effects from the meds. I climb the same stairs everyday so have been logging how long it takes me to recover from SOB after tackling them each morning. In the last week I have started to notice the time creeping down … only slowly but it is going in the right direction!
Keep me updated as to how your partner is getting on, I wish him and your family all the best.
Guy
gail_24648 GAB85
Posted
shelby92952 gail_24648
Posted
Hi Gail. Unfortunately my partner had these and there was still no diagnosis at the end. They have discussed an open lung biopsy but they are a bit wary at the moment to do so as it can do a more bad for him at the minute as his lungs are quite damaged. We go back I'm 4 weeks and that will probably be discussed more. Please let me know how u get on with your result
shelby92952 GAB85
Posted
Hi He has been seen and under a consultant for respiratory at the minute. He has been discussed with a few people I'm taking it its the same sort of thing. Unfortunately they fear it may cause more damage to him at the minute as his lungs are under a lot of strain. We are back in 4 weeks to discuss how steroids are going and will speak about the biopsy there. They cut away 5 pieces of his nose and 2 parts of lung during the bronchoscopy (not sure the full name with doing the small biopsy at that time) but again nothing was confirmed. Although the Dr did say he was 90% sure there's still that 10 uncertainty.
That's great u feel there is a difference and I hope it keeps up for you. Logging these things are a great idea for us aswell as I never thought to do that. I've purchased a note book and are keeping more track of things and logging all my questions. Sometimes you feel silly but we have a right to know these answers. I really hope that we can have a bit of normality soon . We were supposed to be going away in 4 weeks to celebrate his 30th but sometimes in life you are dealt with setbacks. Thanks for the reply
gail_24648 shelby92952
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zss gail_24648
Posted
What ever happens Gail, I wish you all the best.
gail_24648 zss
Posted
GAB85 gail_24648
Posted
Have you had your results from the EBUS yet? I hope you have and all is as well as can be.
Guy
gail_24648 GAB85
Posted
tangles shelby92952
Posted
Bloods byopsy and CT should be enough to give a diagnosis.
Open byopsy comes with a high risk of infection and should be avoided if possible.
Sarcoid usually attacks two or more organs at the same time and often to much attention is focused on the lungs when the true damage may be in other organs. The ACE levels indicate there are problems, You may have to investigate other organs. Some examples include eyes, spleen, liver, skin, joints, brain.
Best of luck
Tangles
gail_24648 tangles
Posted
shelby92952 tangles
Posted
Thanks for your reply. We are terrified at the thought of an open lung biopsy as we have been told about the complications. Unfortunately the other results aren't showing a full diagnosis. The other part of us are terrified at what else ito could be. He had a small biopsy on his nose and he has been told liver isn't fully working but again another question mark. We go back in 4 weeks as our specialist is on holiday so hopefully get more answers by then
It really is a nightmare waiting game
tangles shelby92952
Posted
Blood tests are marvelous things, they can tell all sorts of interesting info on what is happening to your body.
But, they are only as good as the questions the doctor is asking the laboratory to investigate. Also, only as good as the person reading the report and taking action where needed.
Following tests should give definitive answers.
With bloods for Sarcoid always ask to have included;
ACE levels which indicate the level of current activity of the sarcoid.
Full liver function (LFT) a comprehensive review of what the liver is doing.
Feritin Serum level which will show if there are inflammation issues in the body, if the levels are high you will be fighting inflammation.
B12 iron levels will indicate if there is internal bleeding.
Anything else your doctor feels is necessary.
Lung biopsy by scope.
X-rays and CT
Ultrasound abdomen including accurate measurements of the liver, gal bladder, kidneys and spleen, again whatever else the doctor wishes to include.
Laboratory tests of lung function including lung volume and gas exchange capabilities
If the doctor does not ask the right questions you will not get reports on important information on how your body situation is.
A combination of these will determine if sarcoid is present and the extent of the condition. A path forward usually includes steroids.
Ask, no insist on copies of all above reports. It is your body and you have the right to this info.
Reading the reports gives you a better idea of what is going on with your health. Often these reports will show other issues with your body not related to sarcoid. Often these issues are over look by your doctor as they are only interested in sarcoid, not wishing to get caught up in other problems.
Discussing these reports with your GP often takes away some of the mystery involved in interpreting these reports.
Open lung biopsy worries me and if all above is done then I would hope it is unnecessary
Regards
Tangles
shelby92952 tangles
Posted
Sorry I have just seen this I have been off for a while as my partner is unfortunately getting worse. He was admitted again this morning but is at home and has been giving antibiotics for 48hrs of no better back at the hospital. Unfortunately his consultant is on holiday at the minute and no one else seems to be taking note. There is something in my head that is saying there's more to this or even of it is sarcoidosis
It's amazing talking to yous all and yous all have answers yet the same tests aren't showing this for us. I'm really confused. I don't know where to turn to next for answers
Thesufferer shelby92952
Posted
Sorry to hear about your partner, shelby. How's he doing now? Any better? I hope somehow they figure something out and give you the proper diagnosis. I don't know but it seems doctors don't always do all they can to help their patients. Well, they're not the ones suffering.
I hope you'll have an answer soon. Push for one if you have to.
Good luck.