Recovery from pulmonary Tuberculosis : I have... - TB Alert

TB Alert

1,051 members406 posts

Recovery from pulmonary Tuberculosis

Leelou1984 profile image
28 Replies

I have pulmonary tuberculosis and I was devastated at the diagnosis. I was treated terribly in hospital, i was put into a side room (infection control protocol, which is rightly done) my treatment was delayed due to lack of education around tb, people where scared to enter the room (it took 3 days for my bed to be changed), i was told not to leave the room evan for a shower. I felt ashamed by having a disease, but it wasn't my fault! I have been off work 11 weeks and being pushed back i am a nurae and I believe I contracted tb from work! How long will i feel 'normal' again and ready to do a 12 hours shift? What is the 'normal recovery time?

Written by
Leelou1984 profile image
Leelou1984
To view profiles and participate in discussions please or .
Read more about...
28 Replies
SadieR profile image
SadieR

Hello Leelou. I’m sorry to hear about your diagnosis and your awful experience.

A colleague of mine had active TB & had a delayed diagnosed due to a lack of understanding of the disease in what they say is a low risk area. She suffered lung damage but I think she was back at work full time after about 5 months.

Through her diagnosis I was identified as having latent TB & had 5 months of treatment. For myself I started to feel more myself once the antibiotics stopped.

I understand what you say about a lack of understanding & feeling stigmatised. I remember people taking a step backwards when you first tell them, & then having to go through a detailed explanation of why I was not contagious.

I too work as a Nurse but am pleased to say my colleagues were very supportive, as a department we had to be all screened so we all went through it together.

I hope you start to feel more normal as time goes on & your treatment comes to an end. I hope it helps for you to know there are others who understand what you’re going through and are doing what they can to try an raise awareness.

Many best wishes to you

Leelou1984 profile image
Leelou1984 in reply to SadieR

Thank you for sharing your experience and giving your support. I'm just worried I won't be ready to go back especially for 12 hours and i wont get the phase return needed! Its completely knocked me to be honest. At present screening at work has commenced! TB is becoming more common but still hidden! Its scary as I don't know the long term damage yet which will be the worrying thing!x

Soul01 profile image
Soul01

So sorry to hear about your experience. I am in my 3rd week of treatment. Have not had any symptoms of TB yet told it is active. Diagnosis completely missed and was treated for other things and had even had lung surgery.

I too believe I got it from a work situation at some point.

How are you finding the medication?

Have you had many side effects?

Are work being supportive or are you under pressure to return?

hottchoc profile image
hottchoc in reply to Soul01

Hi Soul - Having had TB is so frustrating, the journey feels never ending. My colleagues were very supportive. However during my time in sick leave, I was made to go in for a sick review! I found this really difficult making me feel pushed into leaving my house unwell and having to go into work for literally 15mins. I left feeling really angry that they did not really care. Protocols or not. Serious illnesses need to be adjusted in how your treated. Since I complained though they have looked into it and now do phone consultation. I too have likely picked it up from work where I am in a hospital. Wishing you well in your recovery x

Soul01 profile image
Soul01 in reply to hottchoc

I hope you make a really good recovery and get the support you need from the team treating you. My journey started in May but with a missed diagnosis means this will drag on until at least April - so I sympathise. I too have had review meetings and felt punished for being ill! Really bizarre and frustrating.

Take good care of yourself.

hottchoc profile image
hottchoc in reply to Soul01

Yes I too was missed. No one lustened to me because apparently I didn’t display all the symptoms either! And I’m apparently living in a low risk area! This whole attitude makes a mockery of what an infectious disease is. You don’t get ignored if it’s hepatitis or flu because of where you live, so why should TB? And why do we all have to display the same symptoms before they act on it? Not everyone will get the same symptoms with the menopause, so neither should this! The point is, an on going cough should be looked into, after all that’s what we are told -“ coughing more than three weeks, then see your doctor” it’s a joke!

Soul01 profile image
Soul01 in reply to hottchoc

I didn’t even have a cough! I was treated for pneumonia and empyema. Lung biopsy showed granulomatous inflammation and it has taken 4 months to decide it is TB. Ironically it means I was on a respiratory ward with active TB and potentially a risk to patients and staff. I agree that the attitude makes a mockery of what constitutes an infectious disease. White, UK born people in low incidence areas CAN and DO get TB!!

hottchoc profile image
hottchoc in reply to Soul01

Yes they definitely do! I too was on an open chest ward with active TB for four days, and it was only when I got home did they realise what I had, and a lung full of holes.

Leelou1984 profile image
Leelou1984 in reply to hottchoc

My GP said she had no idea what was on my lungs and was shocked to see it.... I had no cough just flu like symptoms, lost weight and had temp and night sweats. she diagnosed me with pneumonia. 2 weeks later TB. I've been told I am deconditioned and need to exercise by work and to get back to work as normal will take me a few weeks. It seems people think once you are no longer infectious and started meds TB is gone. I still get short of breathe regularly, not every day is the same. Most of the people telling you how you feel and that you are fine have never experienced TB and just think you are back to normal when your not!

Leelou1984 profile image
Leelou1984 in reply to Soul01

Ah bless you.....sounds like you have been through it! its nice to here other experiences and share but its an experience that i would not wish to have or anyone to have! When i was first poorly i experienced flu like symptoms, my Dr sent me for a random chest xray just to follow protocol. I was first diagnosed with pnemonia had antibiotics. I went to hand my sick note in at work and luckily for me my colleagues persuaded me to be checked out! 24 hours later diagnosed with TB. My both lungs infected but my right side was shocking! I am regimented with tablets I have to take the minute I wake up, never had side affect! I am sensitive to all meds which is good! I am due to take step down on meds but can't get them as there is a manufacturing issue with them which is worrying! Work refused to admit it was work related and my pay dropped which was really stressful which doesn't help with recovery. I found no one wanted to talk or help me! I have just started to get somewhere now but dont want to put myself in a position where i cant cope! I hope you are responding well to treatment! And work are being helpful x

Leelou1984 profile image
Leelou1984 in reply to Leelou1984

Did you have a brochncoscopy?

Soul01 profile image
Soul01

As a nurse this must drive you crazy. I was in a bed next to the matron of the hospital’s ICU!! Did any of your contacts test positive?

hottchoc profile image
hottchoc in reply to Soul01

Three colleagues and one daughter x

Leelou1984 profile image
Leelou1984 in reply to hottchoc

Is that latent or active? My partner and mum had been found to have latent! Still waiting for contact tracing to be done with my colleagues.

hottchoc profile image
hottchoc

All latent x

hottchoc profile image
hottchoc

My strain of TB took six months to come back - it was ages

Leelou1984 profile image
Leelou1984 in reply to hottchoc

It's a nasty disease..... I've never been so ill x

Soul01 profile image
Soul01

It can take a long time to recover from pneumonia, depending on its severity. Then you have to recover from TB. Then you have to cope with medication side effects - so it isn’t as straightforward as people think.

I was told by the specialist that people become less infectious after 2 weeks of treatment but that people should still avoid immunocompromised people even after 2 weeks.

No one should feel under pressure to return to work. The GP should discuss it with you and most are sympathetic to patients like us.

SadieR profile image
SadieR

Yes the treatment is long and has lots of side effects, there is no understanding and support of this.

I am so frustrated that no one seems to appreciate that anyone can get TB not just the "at risk" group. There is so much secrecy around TB & trying to hide that it's out there. We have been told we are in a low risk area so that's why there is not so much attention & education around it in our area. This doesnt change the fact we were exposed and have suffered and it doesnt help to feel that because we are low risk or live in a low risk area that what we have been through counts for nothing!! Until people talk about it and are open that it is out there TB will never be eradicated.

With regards to your work and 12 hour shifts I hope that your colleagues will support you to return/phase return when you feel able. You're also right that people forget how long the treatment is and after a couple weeks dismiss what you are going through. It is over a year since I completed my latent TB treatment but remember religiously taking the tablets every morning, setting the alarm early so I took them an hour before food for 5 months. It is an experience I never thought I'd I've gone through and not a week goes by when I don't feel frustrated about the lack of awareness and around this awful disease.

It is good to hear other people's experiences and to see we are not alone. I wish you well and hope you can take some comfort that there are people who understand what you are experiencing x

Soul01 profile image
Soul01

I am interested to know if people have or have had side effects from the medication. I was expecting the worst after reading about it and talking to the nurse, but it has been bearable so far.

SadieR profile image
SadieR in reply to Soul01

I was treated for Latent TB so slightly different than for active. I was initially put on Isoniazid and Rifampicin for 3 months ( that was a choice, I could've had 6 months of just Isoniazid but went for the shortest option!) However, after a month I was still really not feeling right. I felt lopsided & like I was mildly drunk on a permanent basis, my balance was affected. I was so emotional too, I cried & the tears would just pour out of me! Having seen the consultant & TB nurse they concluded that it could be the Isoniazid so after discussions I had to stay on the Rifampicin only for 5 months instead ( apparently it would've been 6 months but because I'd had a month of Isoniazid 5 months was ok). After about 2 weeks I stared to improve & feel more normal. My main side effects after that were the coloured wee, I used to get terrible spots & I lost weight as my appetite was deffinately reduced!!

I'm glad that you're tolerating them all well, it is a long journey if they make you unwell x

Soul01 profile image
Soul01 in reply to SadieR

Sadie, was the latent TB an incidental finding? Presumably if you’d caught it from your colleague you’d have had active TB...or am I being thick?!!

Thanks for your comments about side effects.

SadieR profile image
SadieR in reply to Soul01

No you're not at all being thick, it's all so complicated it gets a bit of getting your head around!!! The Latent TB was diagnosed through contact screening at work due to my colleague having been diagnosed with active TB. Can't be certain I caught it from her but she'd been ill for quite some time (months) with a productive cough & had many visits to GP & A&E & many antibiotics & sometimes the same antibiotics with no effect so it's thought to be quite likely.

The blood test through the contact screening showed positive so it showed I had been exposed to TB but for me the bacteria were asleep. I had to have a chest X-ray which was negative & I had no other symptoms so it was concluded I had latent TB. Hope that helps x

Leelou1984 profile image
Leelou1984 in reply to Soul01

At the start of treatment I had tingly fingers and numbness but that subsided after a few weeks. I became agitated often, felt nauseous on occasion but at that point i was so poorly just put it down to that! I laugh at the orange wee now lol! When you first start treatment they scare the life out of you like 'miss a day and treatment won't work and symptoms will return'! I am regimented with it now! I would never want to experience this again.

Ehinoma profile image
Ehinoma in reply to Leelou1984

Me too TB is a bad experience, I have not still regained my weight again , but no more night sweating again👍 only the table make me go crazy and I am finally back to work again as a nurse, all my college were afraid of me when I came back to work after 3 months but the life is normal again with them working together, I just hope I will never get TB again, even yesterday a new patient with Tb in my station, hope I cannot get infected again because I am always wearing mask before I enter the Patiente room , hope there is no risk for me?????

Soul01 profile image
Soul01

Sadie and Leelou, thank you for your replies. I felt really heavied out by the nurse and was expecting to spend the next 6 months lying on the edge of my bed near a bucket!! The orange wee is just weird! I cried yesterday (very rare for me but family did something really lovely for me!), I get some nausea in waves, some tingling/numbness and can sometimes feel a bit spaced out. So far, it hasn’t been as bad as I was expecting. I had read some horror stories!

Ehinoma profile image
Ehinoma

As for me I begin to feel normal after 3 months, but I stayed 6 weeks at the hospital I have resumed work again , the only thing is that the medications makes me feel a bit tired when I take it , after I urinate for more than 3 times I feel better again,

Leelou1984 profile image
Leelou1984 in reply to Ehinoma

Its been 3 months for me now and I'm starting to feel 'normal' but still not right! I still get short of breath when walking upstairs or anything with excursion! I've noticed I get heartburn a lot lately and feel nauseous, not sure if this is the medication or not tho!

You may also like...

Fever not improved with Tuberculosis

was 99.5 in the evening so my nurse said it was normal. The next week it went up to 100.5 and this...

Doctors inexperience of Tuberculosis.

I had contact with tuberculosis that was rife when I was 5 years of age & so inhaled the bacteria as

New to tuberculosis and I am a mess

all my fault. Treatment is going to cost us as we have very little insurance only. I am scared of...

Is it tuberculosis or something else?

How long does it take for the cough to go away? Tuberculosis.