My chronic MDS journey, symptom managment

[Julianna]

Chest xray & bloodtest show pneumonia still present & that's why I'm still having sweats. So GP suggested an antibiotic injection for 5 days & physio told me to get more active! So hopefully that will give it the last push.

But my poor gut is bloated & sore from all the antibiotics & for so long. I'm taking probiotics to help. Looking fwd to being off them all.

[Chirley]

Julie, I had pneumonia in the base of my left lung for 6 weeks after discharge from hospital and after returning to work. (After pneumonia all lobes both lungs). It's kind of common for it to hang around in one spot. Hang in there, it will get better. BTW, don't be tempted to take probiotic yoghurt for your bowel issues, they are NOT recommended for people with bone marrow issues. I suggest you contact a hospital dietitian specialising in patients with neutropenia (or just dysfunctional ones like yours) and see if she recommends something to normalise your gut flora on antibiotics.

Good luck.

[Cheryl C]

Are you serious, Chirley? I understood that probiotics were an important supplement for MDS sufferers. I know that it's not wise to take them along with antibiotics, but rather after completion of treatment. Please tell more ...

[Chirley]

I don't know much more. I was given an information sheet by the oncology dietitian two admissions ago (after many years of being neutropenic) stating that I needed to avoid probiotics including probiotic yoghurt. Apparently they can throw out normal gut flora colonies. Something about the goodies not being so good in excess numbers, she said.

I didn't ask too many questions because it didn't really effect me anyway.

[Cheryl C]

Hmmm ... I take a probiotic about once a week normally. Will investigate more.

[SLB]

How are you going Julie? Hope you are feeling better.. Sorry to hear that life is so hard for you. Constant infections would certainly be a challenge. I spent 10 months with neutrophils under 1 (usually About .2) and only once ended up in hospital with an ear infection that burst my ear drum. I was extremely lucky... Especially considering I had 2 small children.

I have a friend who gets the globulin transfusions.. Prior to diagnosis (I believe she is under the care of a endocrinologist) she had constant infections especially chest infections/pneumonia. Might be worth checking into?

Anyway hope you are feeling better. Hang in there.

[Julianna]

Hi guys. Yeah not sure about probiotics.

I had the last injection today & was hoping it was improving things. Think it has a bit. But tonight I have a bit of increased temp 37.6 right now. I still have the sweats but less often. Need to just keep an eye on fever. Seeing my GP again on Monday & maybe another chest xray. Ahhhh...not sure how long this will go on.

Wondering if a fever is also my bonemarrow's way of coping with it's unusual blood cells that are produced. Just an idea. But I'm also still coughing a bit. Who knows.

Thanks for the support everyone xo

[Julianna]

How are you going now, Sharnie? Nice to meet someone near my age 😊

[Hopeful]

The discussion about probiotics is interesting as my allergist also said that I should avoid taking probiotics. (I am immune compromised but am not post-transplant.) I did a little research and found this supporting article:

http://www.nature.com/bmt/journal/v4...t2012153a.html

[Julianna]

Hmmm ok thanks Hopeful! I will think on that.

Well, I'm still not feeling great but I think it's part of this nasty virus. I just feel like I've got a cold now. My GP put me on another 5 days of strong antibiotics so I don't go backwards. So I'm still taking 2 types. Hope I'm starting to feel better soon. Heading up to my family for Christmas. Like to enjoy my time.

Is this going to be my life from now on? Wish I knew what was ahead. Fevers not nice. I don't like the idea of them being a chronic thing.

[Julianna]

Temp tonight 37.8

How long is this going to go on

I can feel when I have a temp

It's like my skin gets really sensitive & starts to hurt

At least I went out to lunch today

And even went for a walk

Still hanging in there...

Early to bed

[Chirley]

Julie, when was your last BMB?

[Julianna]

Hey Chirley, a few years ago. I was going to ask my specialist next visit if it's worth doing a biopsy again. Not feeling good for the past month.

[maggiemag]

Julie, I was wondering if perhaps you should see a specialist for all this? Maybe an infectious disease physician, or your oncologist? As you know, prolonged use of antibiotics can lead to resistance and sometimes serious consequences. And I second the motion for another BMB.

[Chirley]

Julie, is it possible to ask your haematologist for a progress BMB? Just for reassurance? It seems like a long time since your last one considering you have secondary MDS and ongoing fevers and infections.

I know it's not easy to request specific things in the public system but in this case I thing a BMB request is justified.

Good luck.

[Julianna]

Thanks guys. Yeah I have to wait to see my specialist in January. I've been in touch with them & went to the local hospital. They sent me home & said it's probably a viral infection. But to stay on prescribed antibiotics. They often make me feel like I'm a hypochondriac. I need a letter from my Dr to explain everything.

There are nasty bugs going around. Seems like this is just that. My chest xray was much better, that's something. I just want to feel better without the drama.

[Chirley]

Julie, I went to the local hospital with a fever of 39.6....MDS, severe neutropenia...they said probably a viral infection...gave me antibiotics "just in case" and sent me home. They made me feel really silly for bothering them. The next day I collapsed with sepsis.

My haematologist was livid. He made me feel really silly for NOT bothering him...you can't win!

Now I don't care...I do what I need to do to make ME feel good and stuff what they think!

Please ring your haematology clinic before the Christmas break and ask for an earlier appointment because you are having ongoing health issues that aren't getting better. The squeaky wheel gets the oil.

[Julianna]

Yes you understand me very well then. I've been in touch with the clinical nurse at the Royal Melbourne. Even though I feel unwell my temp never goes over 38 so I'll stay home for now.

You're right! I feel the same way as you Chirley! We have to just look after ourselves.

My specialist can't see me right now but at least she has been kept in the loop. That will have to do for now.

More rest & lots of fluids! I'm trying to heal myself. Thanks for your support. Appreciate it xo

[Leigh Ann B]

My Mom's dr said that you can get infection from your own body because we all carry germs both good and bad. He said that you could stay home away from outside sources and still get a bug. anyone else heard this?

[Julianna]

Yeah wouldn't surprise me, Leigh Ann B. I think that we can only just look after ourselves as best we can, to give us the best chance of survival. MDS patient or not.

[Chirley]

Yes, it's reasonably common. That's what happened to me. You have to take fevers very seriously (sometimes you can even be too sick to develop a full blown fever). Always trust your instincts and don't let nursing or medical profession make you feel foolish for insisting on tests if you/your loved one doesn't feel "right".

Julie....coming to Brissie for Christmas? It's 32 and stormy today. Supposed to be 26 and very rainy with severe storms tomorrow. Very normal summer.

[Julianna]

Yes Chirley, I'm coming up to the heat. Really want to be much better by then.

Enough already! I've had enough. Feeling really not good today. I'd rather be miserable at home thankfully a million miles away & in hospital. There's nothing much more they can do. 😞

I'm on 2 types of antibiotics. I feel sore. Even my skin hurts. Funny feeling.

Sorry, but I needed someone to complain to. Virus...be gone!!!

[Chirley]

You and I both Julie...went Christmas shopping today with my carer. Booked and paid for a spur of the moment Pacific Island Cruise (Doctor said do my bucket list) then had to wait over two hours for a wheelchair taxi to get home by which time I had fainted.(embarrassed +++) I was NOT happy at having to wait that long for a pre booked taxi and fainting as a result.

I've had to spend the rest of the day in bed and I've got central vision loss still remaining since the faint.

Still, on a positive note....the rain and thunder sound good outside while I'm nice and cosy in bed.

[Julianna]

Oh Chirley, what a day. Sorry to hear that. The cruise sounds fabulous! Hope it is very worth your difficult day today. Sounds like u deserve it. xo

I'm setting myself a time frame, if my fevers aren't decreased by next week I will probably go to Melbourne for help. At the moment I'm coping ok. With a few people dropping in every now & then.

Hang in there Chirley! I'm with ya xo

[Birgitta-A]

Hi Chirley!
I admire your stamina! You are like Cheri who went camping with very bad counts and liked it very much. I am more careful but I still go out (to musical or cirkus) with my grandchildren and to restaurants with relatives/friends.
Kind regards
Birgitta-A