I'd really like to ask anyone who has had experience of CLL if they have ever been admitted to hospital with sepsis .
I was diagnosed with CLL a yr ago then last may I spent a week in Hereford hospital (where I was on a walking holiday ) with a horrible case of sepsis feeling just terrible
I was visited by the hemotolagist who said she did not think my sepsis was linked to the CLL
Again 3 months later I was admitted yet again with the same problem very low blood pressure down to 64 very and high temperature of up to 42c . I was pumped full of very cold saline and antibiotics yet again diagnosed as sepsis and again I'm told they believe it's not linked to CLL .
I'm not sure what to think and I'm terrified it's going to happen again!
I'd be glad of any thoughts or other readers experience of this nasty visit to hospital
Many thanks
Pixie
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Pixie1908
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Pixie, do you know what your absolute neutrophil count (ANC) is and how it has been trending? Ditto your immunogobulins? Given we are at increased risk of neutropenic sepsis if we have a low ANC, I'd expect that your ANC is reasonable or your attending haematologist would not have dismissed an association with your CLL - twice!
Were you aware of any possible causes of your sepsis episodes, e.g. a skin infection from scratches during your walking holiday? Have you discussed these incidents with your regular CLL specialist?
I was admitted to hospital for cellulitis this May, which thankfully didn't spread beyond my wrist from a small, shallow cut on a finger and that was 'probably due to my CLL' to quote the specialist. My ANC was varying between grade 3 and grade 4 neutropenia at the time. I'm a great deal more careful at promptly treating any cuts and scrapes now. I can well understand your fear of it happening again, particularly given the infection that triggers it can be anywhere in the body.
Hi Neil Thanks so much for your reply , I'm sorry I don't know my ANC I'm very new to this and should pay more attention to the numbers involved.
Iv got another appointment in a few months to see my consultant again but wondering wether to go get a private appointment with another haematologist to get a second opinion as I'm losing faith in mine.
I had no scratches or cuts visible infections and Iv had so many tests MRI, liver functions , bone scans , ultra sounds.
If I knew what was going on I would feel so much better
Pixie, our replies overlapped. You need to have a more proactive and supportive haematologist and/or learn enough yourself to keep yourself safe. Sepsis can be a very dangerous condition and after two episodes within 3 months I would hope that you were given at least some guidance on how to minimise a recurrence. It must have been particularly scary the second time around. From the tests you had, it seems like they did try to find the source of the infection, but without success.
One of he aims of this community is to help us learn how we can live well with CLL. You'll get lots of support in helping you understand your blood test results if you want to take a personal interest. Many don't but in that case they do really need to have a doctor/specialist that they can rely on to carefully check their blood test results and keep them promptly informed if there are any results out of the normal range and what, if anything, can be done to minimise any associated risks.
Hi, for myself sepsis started without warning putting me in ICU , after what seems ages we found the correct anti biotic , I already posted all that worked for myself. Hope you to can find one that works
Pixie, probably the best way to minimise your chances of getting another sepsis episode is to know what was the avenue of the bacterial infection which got into your blood the last two times, so that you can take the appropriate precautions. Did you get any advice on that?
Do you know which of your white blood cell types was through the roof? If you don't have a copy of your blood test results taken at the time you had your admissions for sepsis, then it may benefit you to ask for copies of your results and ask your doctor or specialist to explain with reference to them why they don't think your CLL was a factor in your sepsis episodes. At the very minimum, ask if you are neutropenic and to what degree.
There are quite a few videos and posts about understanding your blood test results on this site, including this pinned post:
Pixie, Under English law your blood test results and any other information about your health belongs to YOU...
I suggest you ask for, and keep, your blood test results as well as liver function tests and scan results.
Your doctors CANNOT refuse your request... ( Any problems and I will copy you the laws on this )
With this information you can then perhaps see if one type of blood cell is high or another low.
Armed with this information you can study the information suggested by Neil and also you are then in a position to ask your doctor ( OR new doctor ) the correct questions.
There are many specialist doctors who only see patients with blood disorders and there is a big center in Cardiff as well as other places like Cambridge, London, Southampton and Bournemouth.
Any other questions..?? Just ask, that's what we are all here for... And there is no such thing as a 'dumb' question, we ALL started scared like yourself and needing to learn up about our disease.
Pixie, There have been some problems reported concerning probiotic sepsis in immunocompromised patients... might be something to look at if you use probiotic supplements ...
If you neutrophil levels are low, you certainly should be careful of which food you eat and how it is prepared.
Given you were on probiotics and had no scratches or cuts visible infections, then perhaps you'll need to be more careful with your diet, especially if you find out that your are very neutropenic. If you read up on the causes of sepsis, then you'll find that there are any number of ways that a bacterial infection can enter your bloodstream and cause sepsis. Here's one reference just on abdominal sources:
ncbi.nlm.nih.gov/books/NBK6... (Other internal possibilities could be a mouth or urinary tract infection, but I think you'd know about either of those.
If you look at the last reply from me on the Neutropenic Diet pinned post I referenced above, it will take you to a post with the latest thinking on what preventive measures you should take diet wise if you are neutropenic. The full neutropenic diet in all its variants is very restrictive and the latest thinking is that the downsides associated with such a restrictive diet (which patients also find very hard to stay on, negating its value!) can outweigh the benefits. I've been grade 3 or 4 neutropenic for more than 2 years and when my ANC dropped really low, I did go onto a neutropenic diet and found it very limiting. I've since relaxed my diet in line with the latest recommendations and so far I've done OK. I guess the biggest lesson that I've learnt is that there is much that you can do in the way of improved food handling and consumption (like putting food back into the fridge promptly and not having left-overs that have been in the fridge for more than a day), that are minimally inconvenient. I'm also much more discriminatory when eating food that I haven't prepared myself or seen prepared.
If you do find out that you've been quite neutropenic without a warning from your haematologist, then I'd take that as an excellent reason to change specialists. Your life has been in danger twice after all, when some education could have prevented that.
Probiotics have never been a problem for me My WBC were thru the roof but mostly lymphocytes. After antibiotics, WBC "dropped like a rock" as per doctor Drug of choice for me is usually Vanco or meripenem. I am resistant to many and allergic to some
Be sure to get your Ig levels tested as well - IgA, IgG, and IgM. Mine were very low when I was first diagnosed and a week on chlorambucil and prednisone put me in the hospital septic due to a UTI. I agree, it is very frightening, especially since I went into the ER, was moved to the back, and then ignored for about 4 hours while I sat on the bed with rigors. When the nurses changed shifts my new nurse took one look at my blood pressure and all of a sudden I was getting a lot of attention, but I could have been a mannequin for the lack of communication between the staff and me. I had a doctor who spent the whole time he was getting me started on treatment and admitted complaining about the hospital and how could they expect him to do his job with so many patients.
I agree with the others. Get all of your records including doctors' notes and labs.myou should be able to see patterns of highs and lows, including on blood and urine cultures, and what tests were done. There are people here who can help explain the specifics of the tests or point you on the right direction.
Sepsis is just horrible I'm so scared I'm going to come down with another dose once was bad enough.
I work in a school boarding situation and help run the school surgery so I'm exposed to every germ going so I'm desperate to sort it out ASAP.
I'm making an appointment today with my Dr to ask for copies of my notes and ask her how I can get a consultation with another consultant who will look at my case with new eyes.
I'm sorry you were also struck down with sepsis , it's a very scary illness and can go either way if they don't get a handle on it straight away, luckerly in both cases they acted very quickly. I almost missed a long awaited holiday in South Africa last month they only released me the day before we flew , was a close thing . It seems to happen on holiday or just before a holiday , it's crazy !!
I have been known to use my cell phone, call hospital and ask for the nurse taking care of me and getting my attention. Have also called the administrator.
Boosting my IVIG (gamma globulin) made a big difference for me. I was an elementary school teacher, so I understand about all of those shared germs. Before diagnosis I was sick all of the time. From diagnosis in 2003 until I retired in 2007 I was almost never sick. A few UTIs and a few minor sinus issues related to allergies, but nothing like before.
I found that the emergency card given me by my hospital saying that I had CLL and was at risk from sepsis really helped get me through A&E and into rapid treatment as well as the dramatic rigours that shook me from head to toe. Things I found helped prevent infections were drinking lots of water (in your own bottle), steering clear of live yoghurt and unpasturised cheeses and being super fastidious about take aways, oh and masses of hand washing.
I was very sorry to hear what you've been through. Molly's experience of having an emergency card sounds a great idea. I'm sure it would carry more weight than just us telling A&E staff about our extra risks from CLL. (Pat's experience of being ignored for 4 hours at the back of an emergency room, while having frightening rigors, was terrible!! )
I have never been offered an emergency card - I wonder if many other people have? Maybe we should be more proactive in asking our haemo docs to give us one? Specially you, Pixie, with a history of repeated sepsis. (Though as your haemo doc did not think there was any connection between your CLL and the sepsis, then maybe you should ask someone else.)
I think the card sounds a brill idea but I must say when they saw me in A&E they got me on a drip very quickly, can't imagine being left for hours suffering with the shakesim off to my Drs this week to organise my notes and seeing another consultant who I have some faith in
When I went to the ER with rigors and a blood pressure of 80/40 I was ignored for over three hours while a drunk down the hall monopolized the staff. I was there for something else a few years later and again a drunk - a parapeligic in a wheelchair - again monopolized the staff and a couple of officers while the rest of us waited to see a doctor. I seem to time my visits to coincide with the out of control drunks. Very frustrating!!!
Just by nature of having CLL you are bound to become septic. Have you started chemo? Any sources of infection in your body (bladder infe ctions) My do ctor send me to hospital everytime I hit 101 F. Last time in hospital I hit 102.7 and last night I was home and hit 102.6 I think I have a bladder infection again
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