My chronic MDS journey, symptom managment

[Julianna]

I thought I'd follow suit & start my own thread. The brief run down of my story is in my signature below. Thought to start a journal type thread, might help someone else, but I'm doing it for me too. I haven't been here for a while, trying to forget about my intruding MDS but it doesn't seem to go away! Grrrr...

Fevers right now. Long week of trying to stay out of hospital this time. I get them a couple times a year. Unknown cause. Except for once when I developed a nasty pneumonia in my digestive system. Strange thing is my neutrophils are at an ok level, but I've been told they are just not working well.

Anyway, today is day 5 of fevers & I'm still here at home. Have more tests & appts on Monday. Hope I can sleep better tonight. Nights are worst, waking up feeling ill & cold & drenched in sweat. Not a nice feeling but it's a common experience for me. May have to live with this a while longer, no sure. Looking fwd to my specialist appt to see if transplant is a good thing to plan for in the near future. I just want my life back.

[Julianna]

My high fevers have gone but I was still having pain & feeling exhausted all the time. My Hb is down due to fevers I think. But I've had a CT scan because of abnormal liver ultrasound. Turns out to not be my liver but my right lung, pneumonia. I'm still at home in pain & coughing now. On stronger antibiotics. Hope I'll be feeling better soon. Been unwell for weeks now. But still not needing hospital so...here's hoping.

[Neil Cuadra]

Julianna,

I hope you get over the pneumonia soon. I'm sorry you've been suffering but I'm glad that the various symptoms (fever, low hemoglobin, feeling lousy, and of course the coughing) might all be explained by the pneumonia, since then they'll be gone when the pneumonia is.

By the way, there was another conversation going on in this thread. Those posts have been moved to a separate Journey So Far thread for Faye R.

[Birgitta-A]

Hi Julianna!
As you know all infections can decrease counts. Because we want as high counts as possible we should try to avoid infections or receive treatment as soon as possible. (I am sorry if I sound like an old teacher.)

It is important for you to be as well as possible when you get your SCT so you have to take care of yourself.

Since I woke up in the middle of the night with neutropenic fever 2007 and was shivering so much that I hardly could pack a few things and call a taxi to go to the hospital I control my temp every evening. If it is 38.5 C or more I go to the hospital for treatment.

Hope you soon will recover from the pneumonia!
Kind regards
Birgitta-A

[Julianna]

Thanks Neil & Birgitta. The funny thing about my blood counts is that they don't show neutropenia. Or even a low white cell count. So these infections I get are...unexplainable.

But they say my cells are obviously not working well. I've had pneumonia twice now. Once in digestive system & now in lung. And fevers of unknown origin. Sorry that I'm repeating myself. I'm just at a loss as to how I have to live with this.

Many people on here talk about transplant as a choice when they are ready. But my Drs are in charge of me. I will only have a transplant when they suggest it's a good time. Wish I knew when that was. I will talk to my specialist again about this. She is on holidays now. See her in January. All I can do is be more aware of being around sick people etc.

[bailie]

"Many people on here talk about transplant as a choice when they are ready."

For me the determining factor for the optimum time for transplant was when the MDS was at its weakest. It was a decision made in the discussion with my doctor. She said, and I agreed, that we could wait for three months because I was feeling well. But then we would be waiting not for medical reasons, but for my convenience. Since there was no doubt that I was headed toward transplant it was important to pick the optimal time because of medical reasons.

[Birgitta-A]

Hi Julie!
As your doctors say your WBC don't work OK and then there are many other factors that have an impact on our ability to fight infections. We should try to avoid them as you obvoiusly already try to do.

Of cause your doctors will tell you when you should get a SCT. Still you can learn a lot about SCT.

You now have MDS Interm-1. Most doctors wait until the patients have high risk MDS and that can take many years. The problem is that you have secondary MDS that can be more aggressive and has to be watched carefully.

Here is info about SCT slide 4 - http://client.blueskybroadcast.com/A...68234012203116
Kind regards
Birgitta-A

[Birgitta-A]

I can't open the link myself. You could try to open the presentation by Christopher Cogle:
https://live.blueskybroadcast.com/bs...AT=944&CAT=948
Birgitta-A

[Cheryl C]

Hi Julianna - just an idea - have you had your globulin levels thoroughly checked? I believe that my hypogammaglobulinaemia, which was undiagnosed for I'm not sure how long, contributed to my susceptibility to infections. Since I've been having gamma globulin infusions (3 years now) I don't get as many infections even though my WCC, neuts, lymph levels have dropped.

[Julianna]

Thanks Birgitta, will check it out.

Hi Cheryl, hmmm not sure if I've heard of my globulin levels. Will ask my specialist. Thanks.

I think the antibiotics are starting to work. My pain has reduced quite a lot. But I'm still exhausted. Glad I'm finally on the improve. 😊

[Julianna]

I began to feel really unwell on Friday afternoon so went up to the hospital. I'm still here. On antibiotics to prevent further infection. Having blood transfusion tomorrow so that will help me feel better. My Hb only drops with infection.

I listened to the discussion u posted here, Birgitta. Thanks so much. Will keep hanging in there & talking with my specialist. However, frustrating my stuff feels. Nice to talk with people who understand too.

[Birgitta-A]

Hi Julie!
Hope the antibiotics and tx will help you to feel better! Good that you didn't wait as you did with the pneumonia in your right lung - it is of cause more easy to treat infections at once.

I have had neutropenic fever three times and they took all kinds of tests/X-ray when I came to the ER with fever - they started antibiotics without waiting for the results of the tests. They never found the origin of the infection. That is very common.
Kind regards
Birgitta-A

[Julianna]

How frustrating when they don't find a cause! The reason I don't go straight to the hospital is that some Drs say things like they don't know why I'm here. I feel like a hypochondriac. I truely feel bad, even when fevers pass. Without a fever, they are more likely to just send u home. The Dr this morning wasn't sure whether to transfused me or not at 87.

I wish I would have told him, it may make me feel a whole lot better! But if they don't & just send me home, have to just live with that. Hard to though. Viruses are just getting nastier. Even for well people. So hard to know what is my MDS & what I just need to suck it up for! Still not feeling good.

[Chirley]

Julie, my Doc doesn't transfuse unless under 75. My old one used to transfuse under 90....they all vary so much in their thinking.

Sounds like yours is trying to minimise how many transfusions you have prior to transplant.

[Birgitta-A]

Hi Julie!
You know in Sweden patients with blood cancer and fever have a fast track at the ER (like heart patients). I have been examinated, got antibiotic treatment started and isolated in bed in a ward within two hours. The "normal" waiting time in our ER:s is about 8 hours (terrible).

It is obviously very difficult to find infections so they start with broad spectrum antibiotics and they have been effective.
Kind regards
Birgitta-A

[Julianna]

Thanks guys. Wow Birgitta, glad u are taken well care of. I have been today. They are giving me radiated blood with fewer antibodies tomorrow. Never heard of such a thing. But feeling very thankful. Better for pre transplant I guess. I'm still very uncomfortable, up at midnight typing this. My cough still not too productive. Feel awful. Try not to complain. Might ask for stronger pain relief. Thanks xo

[Birgitta-A]

Hi Julie!
Good that you are getting radiated blood (I never got that)!

Remember that all pain killers can decrease platelet: http://www.pdsa.org/about-itp/warnings.html

Still it is important that we sleep - our immune system is repaired when we sleep.
Kind regards
Birgitta-A

[Julianna]

I'm feeling much better now & going home today on oral antibiotics. Yay! Just glad i'm feeling so much better! Pain relief has really helped me get through, only paracetamol. Doesn't effect my platelets as far as I can see. I'm.sleeping much better which helps everything. I feel better within myself. I can walk up & down the ward, so preparing myself for lift off!

I'll be staying with a friend for a few days thankfully. Giving myself time to pick up. The Drs have been wonderful! Listening to me & I felt very cared for. So overall the experience has been much better than others. Think I'm starting to accept the chronic nature of the disease. I can manage it.

And another one bites the dust! Thanks for your support xo

[Birgitta-A]

Hi Julie!
Good that the antibiotics had effect! Hope you will continue to feel OK!
Kind regards
Birgitta-A

[Cheryl C]

Great that you are feeling better and more in control, Julianna, and especially good that you can go home.

[Chirley]

I'm a big fan of that Queen song Julie. Keep well.

[Julianna]

Sorry what Queen song Chirley? I'm a bit slow.

Well I am glad to be home but my inflammation markers are still too high. That would explain my night sweats, even though I can't record a fever. I'm still not feeling great. Trying so hard just to be treated on antibiotics at home. My specialist is happy with that too. Been about a month now being unwell. Hard slog! At least I'm home. And I can contact my specialist, who unfortunately is hours away. But the local hospital has been a great support.

My biggest struggle at the moment is waking up freezing because I'm all wet. But I have my heater & towels & more bed clothes...I'm.doing ok.

Thanks for hanging with me! xo

[Neil Cuadra]

Originally Posted by Julianna

And another one bites the dust!...

Originally Posted by Julianna

Sorry what Queen song Chirley?...

Here's the video if you want to sing along.

[Chirley]

Thanks Neil.

[Julianna]

Oh hahahaha.....gotcha. Thanks 😉