Sarcoidosis worse than ever in my lungs and heart, so depressed

Chest and lungs
1

Hi all,

I came across this forum and thought I would see how it works. I do a couple others, but there are so many of us on those that sometimes it's hard to get a response. Anyway, I am in my early thid ties, married with one son. I was diagnosed with sarc in 2006, in my lungs then my heart. I was on prednisone and methotrexate and received a defibrillator implant. After a couple years, I seemed to be stable and so have enjoyed pretty good health since around 2009.

But now I am worse than ever. My lungs, which never caused me problems, except for their appearance on scans, are terrible. I can no longer oxygenate my body. I am on supplemental oxygen. My heart jumps from too slow to too high in seconds and my ICD registered 22 episodes of tachycardia last month. I am waiting for treatment at Royal Brompton in six weeks, but don't understand how they can keep me waiting after what they said while I was there last. I am to get IV steroids. 

I get some support, have a great husband and all, but I am just so depressed I don't know what to do with my time at the moment. I have written to the hospital with some new developments with my symptoms in hope they will admit me sooner, but I'm not counting on it. I would love to hear from anybody who is struggling similarly or ah say advice. Thanks. X

2

Hi. You're having a hard time. Get your GP to speed things up at the Royal Brompton. It's not right that you're suffering like this and nothing is being done. Take care and keep the forum updated.

3

Try to rest as much as possible and know that you are not alone with this affliction. Easier said than done but this site is brilliant for support.

4

Hi,

I'm sorry to hear your sarcoid is recurring.

I feel that depression is one of the many side effects of sarcoid that is hugely ignored. The steroids and meds have all their own issues on top of the illness that we are just meant to get on with.

The fact we have an illness they know little about is depressing. Meds add depression. The frustration of not being able to be fully active. The unpredictability of the condition every day is depressing. Other peoples attitudes of why aren't you better and what's that never heard of it, how did you get that all adds up. But no medics realise the severe depression it brings

I would go to my GP and demand an early referral. You need to be seen asap if for no other reason what's its doing to your mind. They are now the fund holders and in control. Ring the hospital and ask to speak to your consultants secretary and get an appointment

You have a loving husband and a beautiful child. Count your blessings

I would imagine your anxiety is adding to your symptoms which is understandable. Try and find an inner peace. You are not alone. And although I don't have the heart problems I do know where you are coming from. Mine is in my lymph nodes and affects my lungs severely and they are scarred. I sense your dispair and am just offering a hand of friendship from someone who just gets it

5

Hi Felfin,

I really feel your pain. I know how terrible it is to be unable to breathe. In 2009, I had a severe TB infection (probably due to immune-suppressive drugs) added to my stage 4 sarcoidosis, which caused fibrosis in both lungs, allowing me to only use 50% of my lungs' capacity. I also had a pneumothorax, which kept me in bed for 6 months (the infection spread in my body, and I was taking 35 tablets a day). I also had a drainage tube installed in between my ribs, which is quite painful when kept for months. I was on oxygen therapy for about a year - there were days when I couldn't breathe without supplemental oxygen, not even for one minute. I remember that the first thing I used to do in the morning after waking up was to cry for half an hour. Anyways, the TB was cured after one and a half years - yes, I took those strong medicines for 18 months; they used to make me so seek....- and suddenly, sarcoidosis and fibrosis stopped. I have been stable until this year, when they saw some new lesions in both lungs, which means that either sarcoidosis or TB is back. Unfortunately, I had a rare type of TB, which cannot be diagnosed through sputum (I have nodules with infection, without sputum), so we are just guessing. I have two doctors, one telling me that it is sarcoidosis, the other one saying it is TB. So, God knows, really. But, I am not depressed. smile

When I stood in the hospital for three (endless) months with pneumothorax, sickness, complications, pain, and depression, I understood one thing: life is not ours; it was given to us, as a gift; a gift that we have to return one day. Since then, I have lived my life the best I could - without making any excesses. I know it is easier to say than do, but I am the living proof that it can be done. I take care of myself, and I work really hard, although I have a state pension - working makes me forget my situation. You should also get involved in a hobby or something.

For instance, I love writing; I always wanted to become a writer, and I decided to start writing articles. Now, I have a couple of clients who send me enough work to keep me busy and away from negative thinking. Find something that you can do - I know, it is hard to concentrate, but you can do it. I have days when my mind is spinning is a big, black cloud; usually, I use those days to write, and the next day to revise what I wrote the other day. It works.

Unfortunately, since there are no cures for many diseases, including sarcoidosis, fibrosis, certain types of TB, etc., the only thing we can do is to hang in there and learn how to cope with the situation. I think about those kids - 16, 17, 18 years old - who have leukaemia. Besides physical suffering, they are mature enough to understand the fact that they will never graduate, they will never love, they will never get married, and they will never have children. We have been given the chance to live much longer, so, I guess, we cannot ask for more. One more thing: I feel lucky that I have this disease instead of others, much, much worse than TB, sarcoidosis, or fibrosis; for instance, Lou Gehrig's Disease. So, I have chosen to live my life, regardless of how good or bad it is, instead of feeling sorry or regretting that it will end too soon. I'm not saying that I'm always happy, smiling and feeling fine. I have my own moments of sadness, but I don't let those moments to invade my world.

Eventually, every man's life ends, and we can't do anything about it. You have a husband and a son. You should try to spend the time you have left for them, with them. I hope you will find the inner soul strength to do it. Believe me, you will feel much, much better...

6

Hi Felfin,

i am am also treated at the Brompton. Unless there's been a change, the clinical nurse for the Interstitial lung department is Lucy Pigram l.pigram@rbht.nhs.uk. My advice is to email her and explain how low and unwell you are feeling and ask for an earlier appointment. I have found her supportive, even if she wasn't always able to get the admin system or medics to shift.

Di

7

Thanks for the message. I am resting plenty, now need to try to get out a bit when I feel up to it. It's nice to know we aren't alone.

8

Thanks for the reply. I need to see my GP anyway and will ask if he can help if the Brompton haven't come through yet.

9

Thanks for your reply. I am certain depression goes hand in hand with these sorts of illnesses. In fact, I began to feel depressed before I realised I was getting sick again. The fatigue and inability to get much done takes it's toll. Then, add the news of just how bad things are looking, and it can be hard not be more depressed. I am not on meds yet, waiting for an admission to get IV steroids. If they can't move it up, I am willing to give oral pred a go again. You know you aren't well when you're actually looking forward to steroids!

i have dealt with this before and always been strong. I am so grateful for so many things. It's just going through the worst of at the moment that can get one so down. I figure we are all allowed some time to feel sorry for ourselves, we just can't let it go on for too long. I think it's the limbo I am in that is making it so hard to move on. And then, yes, it feeds back into my illness.

i have already been seem at the Brompton, so don't think I need a referral as such, but maybe my GP can still help. It's nice to have people that understand, thanks.

 

10

Hi Di,

thanks for for the message and info. I had emailed Lucy already on Wednesday and am just waiting to hear back, hopefully with the good news my admission has been moved forward, but I'm not counting on it. I am very grateful for being seen there, but of course, even the best place isn't perfect. Best wishes. Maybe see you there some day.

11

Thanks for your message. Trust me, I know how to get through this.mits just that it's all come on top of me again. I was a mess in 2007, but picked myself up and moved on. I think it's can actually be good to be sad, to grieve, for yourself, for a bit. But then we must pick ourselves up and get on with things. It's just really hard being stuck in limbo at the moment. They tell me I need aggressive therapy, but then don't schedule me for two months! I am also incredibly grateful for the NHS so don't like to complain, but it can get frustrating.

I am actually a writer! I am also working toward a degree with the OU in creative writing, so not so into writing articles, but still. I haven't had the energy to write for a few weeks really and it makes me so sad. I hope to get some short stories published and eventually a novel, but will see. I am also a silversmith, but need to steer clear of fumes an dust, so will probably stick with some other jewellery making techniques if I ever get back to it.

but yes, I am depressed at the moment. I feel so out of control and think if I could just regain even a small bit of control, it would help. Also, it just doesn't help that I can't do anything without being attached to an oxygen tank. I will be okay, but it takes time to adjust.

best wishes for your current health issues, hope you get your answers soon.

12

I hope you get some action from the Brompton and that they are able to improve your situation. As usual with the NHS, most people you deal with are individually fine but overall the organisation moves as swiftly as glue. My next clinic and lung function appointment is 4 September. Fortunately, fingers and everything else crossed, I'm stable and quite well at present, but have experienced very rough patches so you have all my sympathy. Di

13

Ain't that the truth Di?! I've got to wait to the end of next month  for ENT  which is 8 weeks from referral by my GP. Heigh ho!

14

Sorry to hear you feel so depressed Felfin. Unfortunately bothe the Sarcoidosis causes depression (possibly due to not enough oxygen getting to the brain plus how it makes us feel in general. The medicines we take can also have a side effect of depression so its not surprising you are feeling so down.

I was put on a small dose of Amitriptyline 50mg daily and found that this helped a great deal.

I don't know what medication you are on at the moment but it might be one of those causing your heart to become irregular again or your defibrillator may be not working properly. It won't be the first one to cause problems so it might be an idea to ask them to check it out. They might be waiting for your heart to settle down before giving you the steroids and that is the delay. However you should go and ask your GP to contact the hospital to see what the hold up is. You could even ask to speak to the consultant's secretarty to see if there is anything in your notes saying what the hold up is.

It's a good thing that you have a supportive husband too. I think you need to set a fire under one of the doctors to get you seen sooner or just turn up at A&E and tell them your condition has deteriorated etc.

I hope you get on well

Best of luck,

June

15

Hi, so sorry to hear your sad story, I too have it in lungs but not heart, instead I have cardiomyopathy. I have got new recent sarcoidosis activity in my breast and bile duct after having gall bladder removed due to it. The depressing news is new activity in my brain so leaving me more disabled and often talking is difficult due to it being in the so speech centre. The reason I tell u my story is that I'm on a new drug called mycophenolate this has given me massive improvement for 2 years although I'm going in patient at chairing cross for top up steroid also this week as sarcoidosis is active and we need to blast it,

The Mycophenolate is used massively in America and has excellent results if you haven't tried this perhaps it maybe a suggestion to try.

I hope you this helps in some small way, I look forward to hearing more

Regards Kirsty

16

Hi there

I'm in Scotland so not too sure if it'd work down in London or not. But my GP, who is very supportive, always tells me to try and talk to the consultant's secretary if I want an appointment moved up the list a bit. They quite often know better than the consultant when he/she is free and can see the entire list to see if there are any spaces. Plus you also tell them you'd accept a cancellation even if its fairly last minute. 

June is right too, some of the issues may be around your defibrillator starting to malfunction. A friend of mine has had to have his one tweaked 2 or 3 times in the 5 years I've known him. Its an easy procedure that doesn't even involve you being taken in to hospital if that is the case.

Hope all of you currently suffering badly get some help soon!

17

My partner is completely unsupportive. Today has been a bad day. When I'm down I default to being quiet rather than snappy. She feels my quietness is a sign of contempt. I've explained it's the condition and medication but she doesn't want to know. It makes me feel worse. Great eh?

18

Think you need to have a serious talk with your partner as you really do need their support and understanding. I used to have an ex who was never sympathetic when I was ill but when he was I'll the whole world stopped for him! my last partner was totally opposite very caring, sympathetic and could never do enough for me particularly when I was pre diagnosis boy was I grateful!

get your partner to read this page  because the stress of your situation won't help either and she needs to understand that.

With sympathy

rachael

 

19

Hi June,

thanks for your message. I am actually on no meds at the moment. Well, I tried different iron tabs, but all made me I'll, so waiting for an infusion. I do take cyclizine when needed for nausea and cocodomal for pain. I don't think any of these are affecting my heart. Besides, the episodes are identical to those I suffered years ago, so pretty sure they're my sarc. It makes sense as all signs point to a flare- blood count a mess, ace elevated, lungs now terrible, etc. 

certainly, there are many aspects that contribute to the depression- fatigue, malaise, guilt, anaemia, bad sleep, sadness which then feeds into depression, oxygen sat which drops to 58%, etc., etc. I asked my GP about amitriptyline, as have seen it mentioned many times on forums and such. He reckoned it was quite old-fashioned and there were better options these days. I think I will give it a bit of time and see how I feel. I don't really want another drug when I a, soon faced with loads of meds.inhave been on plenty in the past, even some anti-psychotics to counteract the mania brought on by the pred.mso, will see where I am in a couple months, I think.

i am waiting for a four day admission. They told me the hold up was mainly availability for the bronchoscopy plus a bed. I understand there are lots so us waiting, but I feel I am getting worse all the time. They said it's not ideal to have pred before the lavage and also wanted to treat with high doses intravenously, plus my bad reaction in the past. I don't think my heart will settle down until I get treatment. Ugh. I hope to hear on Tuesday. Just remembered tomorrow is a bank holiday so won't be hearing then.

I am very lucky indeed to have my husband. And my son, who is only nine. But I worry how this affects them. They act like all is fine when we all know it's not. I worry one day it will all come to a head. 

I will ill try to be patient, but if I have a serious turn, I will not hesitate to call or show up at A and E. All the best. X

20

Hi

Im sorry to hear that you are not supported. That would make me re-think things. but when days are bad, i do know we dont have the stength to even think!. I left my partner after quite a time after diagnosis. He was 'supportive' he said. But wouldnt accept i wasnt better as i was on meds.

http://www.sa-uk.org/Understanding%20Us.htm This has a section on Understanding Sarcoid for family and friends. I found it useful and it made me cry realising other people 'get it'