Thanks CLL and Sepsis, I'm now holed up at home and a little afraid to go out and about! Plus, how you can have an infection and not know?

Thanks CLL and Sepsis, I'm now holed up at home and a little afraid to go out and about!  Plus, how you can have an infection and not know?

Just wondering how others deal with this situation, after having a really nasty episode of sepsis (and septic shock) following yet another chest infection (8 in 4 months, some at the same time, that in itself has been tough) I am now feeling very afraid of going out and mixing with friends at public events - anywhere where there can be the risk of infection.

I also now know about 'post sepsis syndrome (PSS)' its not something you get over quickly!! But as i am starting to get a little stronger and as the brain is starting to work I am realising that I will easily go stir crazy locking myself away from the world, I'm normally very sociable and hardly home. I am working on ways so that i don't have to go back to work and can work from home (work was an air conditioned office with a number of young mums always with colds!) but my job also entails meeting lots of people, large events, training courses etc. I almost feel terrified of going back!!

Having found out about PSS it seems that this anxiety is part of the condition, but living with anxiety is not great and i want to try and fathom how i can get back to living, but safely by reducing my risk of yet more infection. Any thoughts?

Just as an aside, i was not that familiar with sepsis, but noticed large posters up with just the word on in hospital on a routine visit, there was no information about what to look out for with sepsis, just that its a killer, so i looked it up myself. Soooo glad that I did because as i was succumbing to this awful condition my memory jogged and i wondered if sepsis was what was affecting me (along with sweats, shivery, exhaustion, no appetitite etc i started having difficulty breathing and realised my heart was beating fast plus felt very sick) I was able to call 111 (UK service) and they got me an appointment at the walk in clinic within 20 mins - the rest as they say is history. Ive realised since that for vulnerable people, such as ourselves sepsis can be life threatening, so just thought i would raise it here, just incase someone else wasn't as familiar with it too - we all need to be vigilant on this sneaky bacterial infection!

Second query...

I am nearly 56, 7 years with CLL, my count was up to 89 in hospital but had dropped to 63 on discharge and is technically stable, evidently! I am on iron as slightly anaemic. I just saw my consultant on Tuesday for follow up check after the hospitalisation, and was surprised to be told i had tonsillitis, i knew one was a little swollen and had been mildly sore on and off for a couple of days (you should see my neck gland! but then again its been up for 4 months now so not spectacular to me anymore!) but i had no idea it was tonsillitis, that usually knocks me for six, so no idea how i can have it and not be really ill again. Any thoughts on this as well?

Thanks everyone, its such a comfort to know that i am not alone on this journey.

cheers, Angie x

24 Replies

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  • just realised that reads as if 8 chest infections - thankfully not, but 8 various infections (laryngitis, tonsillitis, sinusitis) all went to the chest, others didn't

  • Oh how I feel for you Angie and understand your concerns. You've had a really nasty time having sepsis that developed to the septic shock stage. You'll be aware that there's a 50% mortality rate with septic shock.

    I've had sepsis twice. Once with an undiagnosed infection which was believed to be a UTi (but they never did ascertain the origin) and last March when I developed sepsis with severe pneumonia. I don't want to go into too much personal, identifiable detail as the post isn't restricted to the community, but it's a dreadful and scary complication. Thankfully it's very much on the medical radar at the moment and apparently is leading to many inaccurate sepsis diagnoses caused by over-caution. However, because the consequences can be dire, I don't think that's necessarily a bad thing.

    I wish I knew the answer to dealing with the fear around sepsis but my only advice is to remain vigilant and keep the means to do your own observations if you suspect infection or feel unwell. I do my b/p, pulse (which is massively elevated during sepsis), temperature (which can be over 38 or under 36 with sepsis). I also take my blood sugar and monitor my urine output because it decreases noticeably when sepsis strikes. The last time I rang an emergency doctor he said he was astounded at the detail I could give him and I told him I had sepsis developing. It's information I'd rather not have had to learn but I'd urge all CLL'ers to remain vigilant with this.

    Please take time to fully recover because it takes its toll and unfortunately we remain at risk of further recurrences. I'm sorry I can't be more reassuring but I think it's important to be realistic. I don't live in a bubble however but simply try to take all necessary precautions to avoid infection including frequent hand-washing. I treat even the smallest cut like a major wound threat including fungal infections and I keep emergency antibiotics in case infection develops quickly.

    It must be so difficult for you with your job and it could be that at the moment, working from home as much as possible may be advisable.

    Make sure all your vaccinations are up to date and don't take unnecessary risks. Easier said than done I know.

    Hope you feel much better soon and never have to experience this again.

    nhs.uk/Conditions/Blood-poi...

    Supportively,

    Newdawn

  • You didn't mention weather you have had pneumonia shots or flu vaccines? When you get sick don't you call the Doctor right away? When I was diagnosed with CLL my doctor said to call if and when I felt a fever coming on. I guess i am lucky since I had CLL since 2002 at age 49. Tx with Treanda then 3yrs. Ago I was started on Imbruvica. I do IVIG once a week. Good luck with your health.

  • Hi anji. I'm 48 CLL diagnosed 2007. Had many treatments many hospital admissions. Some advice.

    1. When you've been ill start back by doing one thing each day e.g. Going to the post office or the shops to get some food. Walk every day if you can. Just 20 minutes say to start with.

    One might say you have a confidence crisis. Anxiety. That's understandable!

    2. So my next piece is know your status

    Haemaglobin. If this is low you will get out of puff

    Neutrophils. If this is under 1 you should probably use gcsf. If it's normal you can probably be more confident about living normally. Getting out.

    And there are other important components like immunoglobulin. Ask your doctor about your status and what you can do.

    3. Seriously consider counselling. Some hospices in the U.K. Provide free counselling.

    4. Know your insurance products . Your own and through work. Certainly once you start treatment you should use income protection if you have it and take time off work if you prefer to. CLL may also pay out on critical illness. These things can change your circumstances.

    5. You may need treatment for CLL soon. They work!

    Finally. Yes you may need to reduce your exposure to some public things if your immune system is weak. But you need to know if that is the case from your doctor. Not just anxiety. And anxiety is real in itself. So you make the decisions. The key here is to know and do what you want!

    Best wishes. Corin

  • Thank you so much Corin, lots of really useful information here, Yes haemaglobin low, so now on iron tablets too. Sadly no insurances, my life one finished a year or so ago and they would not renew, understandably :(

  • Did a doctor prescribe the tablets?

  • Angie

    It's good that you have brought this subject up for the benefit of us all!

    However, you are a very naughty girl!

    Patients with CLL no matter what stage should be extremely vigilant in respect of any infections even slight colds and definitely flu and yes even man flu for us males!

    As soon as temperatures rise above 37.5 or anyone suffers from rigours it is absolutely essential that an immediate visit to a GP or your medical team to get things checked out is organised and if in the UK don't take an appointment that is far in advance if your surgery is a busy one. Insist on an emergency appointment!

    This is your part of the cll management situation.

    Many think that they are being overly cautious or are making themselves a nuisance to their GP.

    NO it is their job to treat you and as a CLL patient you should take priority!

    Let this be a warning to us all you can't be too careful with our condition!

    Geoff

  • Hi Geoff, you did make me smile, and I consider myself 'told off' :) and you are right, we do need to be proactive with our health, even if we feel we are becoming a 'nuisance' to the medical professionals - which indeed i have many times, and even mentioned that I think of myself as becoming a hypochondriac - thankfully my doctor reassured me that i was not, and that i was right to keep coming to the practice with all those darn issues that keep coming up!!

    We can't be too careful, this I now know to be true

    (as an aside, i had a cold sore flare up on the lower edge of my nose that saw me admitted a few years ago, the virus instead of heading down into my neck gland went up and into my head...i felt very ill/had temperature etc, i knew something was seriously wrong. I called 111 and an ambulance took me in, i was there a few hours and almost like a switch being flicked off, the whole thing just went away - sadly the doctor in A&E pretty much told me off for wasting their time with a cold sore!! Haematology called the next day asking if i was treated, i wasn't other than paracetamol but they explained that i should have been as Herpes can be a killer when heading to the brain, much like meningitis!! I got the tablets they prescribed and always have some in....just in case!

    cheers, Angie

  • Hi,

    Like you I've had lots of infections that have hospitalised me, and I really feel for you. Following 6 months of such I returned to work and did a lot from home, which my bosses encouraged but whenever I went somewhere for a meeting I found the person with a cold sat next to me! It was like there was a magnet. I arrived early and late but always with the same result. I could not beat them so I decided to retire before the following winter sickness round. I know you are a few years younger than I was, but could you take medical retirement? The people I know who did do so say they did not lose out financially when they took into account their reduction in travel costs.

    Now for going out. Firstly suggest you meet people where you can do an outdoor activity together, it's proximity that transmits germs, so don't get too close. Even a walk round the park is beneficial to all of you. People must know you've had a lot to cope with and will respect that you cannot go into confined areas. I don't now do crowded pubs but I will do pub gardens or terraces. I know the smokers are out there but my theory is that if non-smokers take over the area there's nowhere left for them, so they can't smoke!

    For shopping I prefer to go to shopping centres in the evening when fewer people are around. You could also try meeting friends whilst you are there as again there is plenty of air space around you. You can also cast an eye on the clientele before entering to see if you can spot the coughers and move on if need be.

    Take up an outdoor sport e,g, golf, cycling, rambling, horse riding. All have clubs and you can meet new people at a distance.

    Indoor concerts etc in winter? Sadly I think you should avoid those. Your friends should understand as they know you are susceptible to the bugs there, Do lots outside in the summer instead, though I think maybe Glasto should be off your camping list.

    I guess my overall strategy is to be outside whenever possible.

    Wishing you some better health this year.

  • Septic shock and Sepsis should make one paranoid. I have seen a brother go from no infection that he was aware of to total organ shutdown within 48 hours. He unlike us did not have CLL but Hep C. So different situation. But one day I was visiting with him and a couple of days later he was gone. So use your paranoia to your benefit. I have read that along with skin infections upper respiratory and head infections are the ones in which to watch out for with CLL. So keep sinuses clear and pay attention to allergy symptoms, colds, coughs..etc. I am 60 and watch and wait for 2 years. No symptoms but lymphs off and on and ALC at 61. But all my other counts are normal. Thankskfully.

  • Hi, I just wanted to say how sorry i am for the loss of your brother, that must have been a dreadful shock to the whole family - infections/sepsis that can happen so quickly are scary. My mum's neighbour was lost to pneumonia at Christmas, it took her in 36 hours, the first 24 plus hours she was just feeling a bit off it! We all have to be so vigilant don't we, and take action as soon as we realise there might be a problem, I now understand this much more clearly,especially from the comments shared by others here. take care, Anji

  • Hi Angie, I just want to say that I'm so relieved that you were so alert to the sepsis and got help when you needed it. Hope you continue to improve. Best.

  • Angie, Is it correct t assume that you have not been treated? Either way,I hope that what I am about to relate might help you. But if you haven't yet been treated this might impact you even more. I was diagnosed a year ago,although "they" suspect that i have had CLL since at least 2012 when my platelets and WBC s went nuts. I wouldn't suggest this to you,if I didn't see it do wonderous things for me and for others. I gave up dairy,processed foods,sugar,white flour foods,meat,poultry and coffee. I went on an 80% strict macrobiotic diet...healthy organically grown root,round ,green leafy vegetables. Lots of brown rice. Fresh ocean caught whitefish.(COD,halibut,fluke,Hake) Sourdough bread . Soba noodles,miso soup. Almonds,sesame seeds,pumpkin seeds. Aduki beans, lentils, watercress,kale,broccoli ,etc. I eat healthier than ever before,I walk or run 2 to3 miles at least 5x a week. I do a lymph scrub twice daily. The bottom line...when diagnosed I was a wreck that couldn't complete a full sentence without feeling weak or coughing...a year later I am feeling better than ever and have not had one cold in a year's time. NO FATIGUE at all. It's TOUGH LOVE...but if I can do it(I have some lousy markers) so can you and I am 63 years old. Incidentally,I got rid of no less than six minor ailments that had been plaguing me all my life,since becoming macrobiotic!!

    HANG IN THERE and take action,even if it's baby steps...one foot in front of the other.

  • Hello, thanks for this detailed list of suggested foods and activities. Ive been leaning towards this for some time (i was pre diabetic for a few years then stress triggered it big time, so diet changed and now my sugars are doing great) but I had not undertaken it as seriously as you have. Im inspired that its helped you so much. Miso soup has cropped up a number of times in different ways as a suggestion to me recently!

    Can i just ask, what is a lymph scrub?

    Hanging in there, by my finger nails..!! :) thank you so much

  • Hi Angie

    Just want to add my commiserations and thank you for raising the subject of sepsis I can't add any more advice. Re your tonsillitis - CLL is such a strange condition - I feel really well most of the time and have managed to avoid all the bugs which have been doing the rounds in my locality and within the extended family. Yet my last monitoring revealed that my WBC trend continues upwards (378); my platelets are down (130) and haemoglobin about the same (108) and my spleen is now enlarged to the extent that the consultant can feel it (after almost 3 years on W & W). I do eat a healthy diet most of the time and am outdoors as much as possible, which I think helps. I am now working on stress reduction and positive thinking.

    Your photo is lovely - where was it taken?

    Stay strong!

    Maggie

  • Hi Maggie, it sounds like you are tackling the CLL the right way, with positivity and and being outdoors as much as possible, i'm sure it makes a difference! The photo was taken at a nearby nature park, Im so lucky its just down the road here in Lincolnshire, and yes, i try and walk there now and then....but, I really need to be doing it more often don't I!! :) x

  • Thank you all so much, lots of great advice in there, i will take heed, and indeed probably a little more care of my health! Im working on a total life change, setting up a new business where i will be trading from home, but also working on ways to remain social but in safer surroundings. I am also going to work on improving my diet (which I already try to make healthy - no additional sugar/alcohol (booo)/processed foods etc but know i could do better) plus more exercise, more mindfulness and finding more ways to control the night sweats (hormonal i think as not drenching, though have had 4 of those when i was really ill)

    Thank you all for sharing your thoughts, your experiences, your encouragement and well wishes, it really does mean a lot and makes a difference! x

  • Hi Angie. A lymph scrub or rub, means different things according to what type of holistic healer you are using. In my case,I use a warm,wet, cotton rag and while showering, scrub my entire body. You begin with your nodes that are located on your neck and scrub in a very light motion downwards. You don't want to hurt the nodes ,so use no more effort than you would use to move a penny along a table. I have three nodes in my neck that are about1/4- 1/2 centimeters each. I try to jog indoors (large room set up for that) the motion is very similar to rebounding which absolutely moves lymph. After I jog I do the lymph rub or scrub. I work each swollen node by counting to 30 seconds on each problem node. Do each node 3x for about 30 seconds on each problematic node. You can google all kinds of lymph massages. I'd say tell your doctor what you are doing and make sure that they approve. Mine do. Good luck and feel well.

  • Just a word of warning!

    In my opinion and I'm no doctor,of course, things like the lymph scrub or massage should be avoided!

    There is several threads on here pertaining to this idea and numerous opposing views. However, such actions have been proven to move cll cells from the nodes into the blood stream and can therefore give erroneous test results even bringing treatments forward etc.

    Eating healthier and having a balanced diet will help General health,of course, but there are several bogus claims about diets and foods claiming they slow down or even cure cancers which are totally unproven.

    My advice get the advice from a cll specialist before taking supplements or going on one of these dubious regimes.

    Enough said

    Geoff

  • Geoff, I know about twenty CLLers who use diet, fasting,nutrition,food avoidance, rebounding,jogging, walking,general body rubs and lymph massage,all with the approval of their doctors. The intent is not necessarily to cure,but to restore better health,optimize vitality and hopefully to slow disease progression. Where platelets and red blood cells figure in, diet and exercise have worked for me. Increasing both counts and one count by 60 points. My doctors are both on board with doing a lymph rub and they are both very pleased with my Macrobiotic diet that has definitely transformed my vitality. In fact I was staged at stage 1 and within 6 months my stage was lowered to stage O. I had no strength upon diagnosis and today I jog 3 miles today. And you might ask why the Platelet Disorder Support Association recommends using a macrobiotic diet for not only increasing platelets ,but for stemming the platelet drop,as well.Believe me, when I say anyone can do internet searches and provide links to articles that discredit both proven medical treatments,just as they can show info that disparages complementary practices,that although may not cure CLL or other cancers,do promote considerable good health changes.

    I get your point about lymph massages however both of my docs felt that being that I have B cells circulating throughout my body already ,that a gentle massage wouldn't muck things up. However,I said in my post, only do this with the approval of your docs. I trust not only their opinions, but also I have read differing opinions on whether or not lymph scrubs are harmful. So I am going with what my docs recommend. And since my nodes shrunk by about 1/2 a centimeter,so far so good! BUT I DO RESPECT YOUR OPINION. I just don't agree with it,based on my own personal experience and the results that I have seen other CLLers have.

    What are your views on using warm castor oil pack on nodes to reduce pain and bulk?

  • Jettyguy

    I don't think we are a million miles apart in opinion.

    We have both said correctly that one should not embark on any complimentary treatments without first checking with our medics.

    I agree that excise and diet can be helpful in improving general good health which must benefit the whole body and assist our immune systems. I currently visit the hospital gym three times a week and play golf three times per week so practice what you preach in this respect.

    My concerns are based around patients having a Absolute belief in complimentary medicines or treatments at the expense of ignoring good sound medical advice.

    I can't just recall the name of the quack diet that was discussed here a year or so ago I will try and find the details. It based around a heartfelt post from a mother who's 30 year old son had refused conventional treatments due to a belief that the diet was a cure for cancer. She was asking for advice in respect of how she could persuade him to have conventional treatment because she feared he would die.

    I can't just put my hand on this post via the search option.

    Anyway my point was that the inevitable happened and a life was lost.

    If patients wish to go down the route of complimentary medicine or fad diets then they make their own decision and live with the consequences or the benefits.

    My view and advice to all is check with your medics before making such decisions and don't believe Dr Google without a great deal of research through trusted sources.

    There are numerous discussions on this site about these topics most very balanced and with good factual research to back them up.

    Although I do recall one ex member who decided to leave the forum because others had opposing views. Pity because we are all challenged on here which is a good thing!

    But remember we are not medics just expert and experienced patients who can inform based upon experience we have undertaken.

    Geoff

  • Geoff, we are probably of very different opinions about healing in general, would be my take. I don't believe for a second that in every case medical intervention is the only reliable healing mode. Before I tried macrobiotics,i consulted with three patients who had had cancer and now they don't and they credit this circumstance solely to their diets. I was a complete non-believer and would not have tried this diet had I not consulted with these individuals. Science has to be present for something to truly work,is my belief. There are manny many people who use complementary and alternative approaches and they claim to have healed from Cancer and other life threatening diseases. My own personal take: I have not personally found anyone who has been cured of CLL through medical intervention,nor have I found anyone who I can verify that has been cured of CLL through other healing modes. However,since there are at least a dozen individuals who have been studied with regard to "spontaneous remissions of CLL" that seemed to have led to a robust good health for them,I am open minded to the possibility that there may indeed be other types of healing modes that can get as good results for CLL patients as current medical intervention would deliver,presently. It all depends on one's belief system. I am a work in progress. If I can turn my version of the CLL BEAR into a CLL kitten,at that point I may be on to something. If I find that my version of CLL suddenly gets crazy bad,then at that point,I'll consult with my medical people and take the least harmful option in terms of drugs. But I am open minded to the notion that it may be possible for some people to slow their CLL disease progression through other modes of healing ,besides medical intervention. And in some cases, to do this without experiencing the harmful side effects that we hear about so often from strictly using western medicine.

  • I hadn't realised that you were pre-diabetic/diabetic when I replied Angie because that greatly pre-disposes us to the additional risk of sepsis. The first time I was hospitalised with an unidentified infection and sepsis, it was clear they failed to diagnose the onset of diabetes at the time. Even greater reason to keep the glucose levels down.

    Best wishes,

    Newdawn

  • thanks for this additional info, ive been really strict with myself and avoiding processed sugars for 18 months but i must be honest with feeling ill i had been having sneaky sugar treats just to cheer myself up (love Coop style magnums and by only having half a one i pretended to be 'good'!) oh well, back to the treat of nuts! That has woken me up to even more danger associated with glucose levels!!

    This site is just so useful for sharing information, i really do appreciate you taking the time to reply Newdawn! x

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