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MDS Myelodysplastic syndromes

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  #1  
Old Fri Oct 18, 2013, 01:20 PM
Honeybun Honeybun is offline
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Location: Perth Western Australia
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Blood thinners and blood results

Hi all

I have just been discharged from hospital today for treatment of a large DVT in my thigh and large clots in both lungs. I have finished my heparin injections a couple of days ago and now just on warfarin 4-5mg. I received a copy of my blood results and my levels seemed to have dropped and I was wondering if blood thinners could have a reaction on the results or am I starting to decline in my levels a lot faster due to the MDS.

My tests results below compared to last months and the beginning of the year. There has been a big drop especially in the platelets which I have always had a very high reading.

Date HB WBC Plts Neut
30/1/13 112 6.91 540 4.3 ESR was highest at 112

2/9/13 107 7.93 524 4.95
16/10/13 91 4.6 339 2.1 Basophils are now 0 and my ESR
has shot up again to 93 from 62.

Thanks

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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Old Fri Oct 18, 2013, 02:18 PM
Birgitta-A Birgitta-A is offline
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DVT

Hi Honey,
How terrible with a large DVT and large clots in both lungs. I have not found any hematological adverse effects of Warfarin. Heparin can give low platelets.

The decreased counts can depend on the clots that prevent part of the blood from the leg and the lungs to circulate as usual. As they probably told you in the hospital blood clots in the lungs are very dangerous - now when you are getting treatment the danger should be over.

Look out for DVT in the future!

Hope your counts will increase soon when the tissue in the leg and lungs will have better blood circulation! You will manage well with the counts you have now - your platelets are very good.
Kind regards
Birgitta-A
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  #3  
Old Fri Oct 18, 2013, 10:30 PM
Honeybun Honeybun is offline
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Thanks Birgitta. Unfortunately not all public hospitals here thought it was serious, but I found a lovely private hospital and private haemotologist after two weeks of misdiagnose and running around. I am now well on the way to recovery, my leg swelling in the calf has reduced to almost normal (the thigh still has a bit to go), and my coughing has reduced considerably. I haven't done much yet to test my breathlessness yet as I have only just got out. But in three days I am feeling terrific!

My main concern with the level drop was for work, as they need to keep finding a replacement which is not easy in my job. I was just wondering if this was the start of the end of watch and wait status. I am aware that I can manage on the levels I have, it was more the sudden drop and if it would plateau or keep going.

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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Old Sat Oct 19, 2013, 01:53 AM
Chirley Chirley is offline
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Hi Honey, glad you got some care at last. It was a bit ridiculous when they sent you home after they found the PEs and said it was too long ago to treat! Are you sure you haven't been seen by some of my doctors?

Honey, I'd wait a couple of weeks to see what your counts are going to do. My experience is that anything that happens, from infections to surgery, affects your counts short term. Hopefully they'll rebound again when you recover fully.

In the meantime they aren't too bad. You certainly do normally run a high platelet count, do they think that's why you got the DVT after your knee problem? Has anyone mentioned any underlying cause for the DVT at all. I know you had a knee problem and probably a bit immobile but those platelets wouldn't have helped. Are you on any meds to lower your platelets? I know they are in normal range now but what about before this happened? At my lab the upper limit of normal is 400. ESR is a marker of inflammation from arthritis to infection. It's not very specific.

Glad your home and found a good doctor.

Chirley
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Old Sat Oct 19, 2013, 03:11 AM
Honeybun Honeybun is offline
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Chirley

Perhaps they are being trained that way, who knows, they are all a little wet behind the ears, fresh out of uni in the ER.

Chirley the hospital was absolutely fantastic, Bjay wanted to move in, they even fed him when he visited. I could not fault anything, even the stuff up with my vege meal was fixed promptly. They even noticed the lump on my thyroid and ran tests for that while I was there. They did heart stress tests as well. I was in the cancer/pallative care ward with a lovely private room and huge bathroom. I am thinking of talking to the new haemo and to see if I can have my chemo and other treatments there when the time comes instead of the public hospital. The new haemo is very nice as well, very friendly, you can hear patients laughing in his exam room. A good sign. What a difference from the week before of being shoved in a 6 bed ward with 3 males and 2 females, abrupt nurses, and hurry up and get out we need the bed attitude. Good grief I didn't even know they had mixed wards. Imagine my surprise to wake up with 3 elderly gents facing me in the morning.

No one has been too concerned about my high platelets not even the ortho surgeon at the time of my knee surgery. They do think it is due to my knee either the surgery or the trip/fall I had a month later at work. I now have a bursa on the knee. No meds required for the platelets.

My ESR has also been high for about 20 years hovering around the 60's, it spiked at 112 in January about the time I went to the GP about terrible night sweats and lethargy. It did drop to 2 the next blood test later, which I said that seemed abnormal, and they did it again and it was back up to the 60's again. They ran my CRP as well and that was also high. They only seem concerned if it goes over a 100. Which is how they found the MDS, because I wanted a BMB.

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #6  
Old Sat Oct 19, 2013, 03:47 AM
Chirley Chirley is offline
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Yeah, I like my private hospital too. The nurses are just as busy (maybe even busier) than the public hospital but they are so much more pleasant and really seem to care.

I never did like going to the cancer ward though because I was always put in with someone who was close to death (visitors with them 24/7) or were confused or demented. Private rooms were reserved for auto stem cell transplants (they don't do allos) or patients who need to be barrier nursed either because they have infections or at huge risk of getting infections.

Now that I go to a general medical ward and I'm MRSA positive, I always get a private room with ensuite. They are huge. There's the bed, wardrobe, locker, fridge, safe, desk with chair and recliner chair. The TVs aren't really TVs, they are really computers with TV included. I also ask for and get a pedestal fan (steroids give me the sweats) and a wheelie walker.

Unfortunately the cancer ward didn't give chemo routinely unless something went wrong. If you were an inpatient and needed chemo they sent you around to daycare. I think it saved on nursing costs and it also provided profits for the daycare provider.

The difference in care really is chalk and cheese.

See ya

Chirley
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