Pneumonia recovery in early CLL

[AdrianUK]

So, I'm about 3 months post hospital discharge from a rather persistent pneumonia that failed to respond to the first three lots of antibiotics. There was scarring left on my lungs. During my pneumonia I was diagnosed with early CLL.

Three months in I'm still coughing fairly often (nothing like as bad as it was...) and experience excessive fatigue, with muscle weakness and pain when I walk for too long.

I am very grateful to be able to work, and am being allowed to work from home a fair bit which is just as well.

I'm wondering if others have also experienced a slow recovery from pneumonia. Should I expect my energy levels to bounce back between now and Christmas? Doctors have told me pneumonia takes up to six months to recover from. Or, is this the new normal I just have to get used to? What is other people's experience?

Also, how hard should I push myself? As someone said there's a difference between aching legs and feeling like you are going to fall over! One of my colleagues spotted me stumbling at the end of a long day recently and I would have gone over, for sure, if I didn't have my trusty nordic walking pole (one only seems to be acceptable and looks less old man like than a traditional walking stick!)

Some friends say I should just push myself. But others warn against over doing it and say I should listen to my body. But my body tells me to spend the days lying down! So I've settled on a happy medium of trying to get on with life but sprinkling in recovery days like today when I will be lounging around the house (tho working) most of the day.

What is others experience and advice?

[AussieNeil Partner Administrator]

While thankfully I've so far escaped pneumonia, I have struggled to recover my fitness after a cytomegalovirus (CMV) infection. I had a very slow recovery over 18 months to 2 years and I believe I slowed it by pushing myself too much, so I was wiped out for up to 2 days each time after overdoing it. Problem was I was very fit beforehand (this happened just after my CLL was diagnosed from an investigation into what was causing my severe neutropenia) and I got no warning signals from my body on days that I felt good and pushed myself. The next day was a different story and I'd struggle to get out of bed.

So definitely listen to your body and very gradually increase your level of activity would be my advice. Also check your vitamin D level is within the normal range. I reached a plateau of fitness way below my previous level and it was only when I found out my vitamin D level was sub par and boosted that into the normal range that I was able to again make progress towards an acceptable level of fitness.

Neil

[Sepsur]

My family received the news that I had CLL on top of sepsis, multiple organ failure following on from double pneumonia- I was in a coma, so oblivious. Woken up 2 months later, by then on a trachy, various life support apparatus still in place. I had chronic muscle waste and exhaustion permanently. Learned to breathe on my own, eventually sit up over the bed with help (6 people I recall). Sitting in a chair was agony, eventually learned to stand up and step some. By the time I left hospital 2 months later - I could manage to shuffle really without a frame and do a small flight of stairs. I could probably do 10-20m

I tried to 'ignore my body' for the first six months and was humbled by its frailty. If you have a physio regime- stick to it. Try not to overdo it but equally avoid laziness. Work is essential & important for me but I still need to measure myself.

I left hospital Aug 16

[AdrianUK in reply to Sepsur]

Thanks. Sounds like you really went through the mill. Mine was nothing like as severe. I do wonder about a physio regime and may look into that.

[Tommays56]

Hi Adrian

Its good to see you recovered and have to will to get back in shape

In my case i was diagnosed in 2017 and currently my CLL is stage zero BUT i have a lot of blood work due to a different issue and now that i have and understanding of CLL the old blood work make sense

I was showing some signs of CLL in 2015 but had no systems at all which seems to be the normal course for most people

In mid 2016 the CLL progressed a bit more and it started to affect my performance and ability to recover and i had a series of small injury's that did not make scene

In April 2017 i did my last long hike and decided i just needed a rest and took a break from hiking as i was having to many problems

In Late May My GP sent to to the CLL specialist and a diagnoses was made ,my WBC peaked at 21 and ALC at about 16

I got sick two times 10 days In June and 10 in July which really wore me out and i am just recovering in September

My blood has settled down to WBC of 17 and ALC of 14 which is pretty good but i have to be quite careful and I use a heart rate monitor to gauge my level of exercise as i am used to working at a high level which is not possible for the time being i can do about 30 minutes

[Jacksc06]

Hi. I was admitted into hospital in November 2015 with pneumonia. CLL was discovered as a result of the blood tests I had. Recovery is a slow process, I would advise doing a little and often is beneficial. Your body will tell you if you are overdoing it. Yes you will ache but steady movement should ease it rather than sitting for long periods. Regards.