Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Aug 15, 2012, 12:24 AM
Mydad Mydad is offline
Member
 
Join Date: May 2011
Location: Wilmington, Delaware
Posts: 15
Not doing well at all

Well as soon as I posted on Saturday night I received a phone call from my mom, my dad had fallen and she was not able to get him up. We ran to the house and proceed to get him up. The stools were so bad with being black and tarry. We contacted hospice again and they immediatly came out and gave us the option to take him to the hospital. We opted for hospital. Before leaving we gathered a sample of the stool to take with us. As soon as the ER doctor saw it he said he was bleeding internally. His RBC 4.3, WBC .06, and platlets 5. They started a transfusion, he has received 8 pints of Red, and 2 pints of plalets, and his numbers only increased very little. He is still in the hospital, he keeps spiking a fever as high as 102. At first they thought it might be from the transfusions, but with no transfusions for the last 24 hours they now dont know what would be causing the spike. His chest is clear, and he is in no pain.

This stay in the hospital is a little stranger. Usually he would get the transfusions, and the next day he would be sitting up in bed wondering when he could get out, joking with the nurses, etc. This time it is so different. He still has no energy, he has no strength. One thing that is the same is that he wants to come home.

As a family we have talked and decided that we want him to come home, that is where he wants to be, that is why hospice was brought in, in May. Since he has been diagnosed this weekend has probably been the worse emotional time.

Thank you to everyone who are so willing to post their stories for others to learn. Without this forum I would lost.

Thank you again,
Kim
__________________
Kim daughter of Phil 76; Diagnosed 2011 with MDS, Refractory anemia with excessive blasts; Diagnosed 2012 with AML; Treated with Vidaza and Dacogen; Currently only being treated with blood transfusions
Reply With Quote
  #2  
Old Wed Aug 15, 2012, 04:56 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Fever

Hi Kim,
Isn't your dad treated with antibiotics? You know often they never find out what kind of infection the patient has - they start treatment with broad spectrum antibiotics at once.
Kind regards
Birgitta-A
Reply With Quote
  #3  
Old Wed Aug 15, 2012, 12:08 PM
Al's Wife Al's Wife is offline
Member
 
Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205
Kim,

I so agree with your statement that "without this forum I would be lost." I am truly sorry your Dad is going through so much too, and I know just how you feel.
Al has been running a fever off and on for the last couple of weeks and I've noticed from reading that a lot of patients have fever of unknown origin. But they did put Al on an antiobiotic while he was in the hospital even though they don't know the cause.
I will certainly keep your Dad and your family in my thoughts and prayers.
I'm hoping your Dad and my husband will recover their counts so we can both breathe a little easier. So hard to go through this.
God bless,
__________________
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
Reply With Quote
  #4  
Old Wed Aug 15, 2012, 09:35 PM
bebop bebop is offline
Member
 
Join Date: May 2010
Location: Maysville Ga
Posts: 323
I am so sorry you are going thru this. I know as a daughter how tough it was for me with my dad. I hope he gets better really soon. it is very tiring and a never ending roller coaster ride it seems. I and everyone is here for you hon.
Reply With Quote
  #5  
Old Wed Aug 15, 2012, 10:56 PM
milliken2 milliken2 is offline
Member
 
Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
Kim;
When is your Dad spiking a temp - is it strictly at night - or can it be anytime? Like Brigitta said, a broad spectrum antibiotic should be hung immediately, and fluid replacement as well to help counteract the temp and make sure he has enough isotonic fluid in his body for his organs to work properly. I know Earl hates to be in the hospital - anytime - and especially when I find mistakes the hospital made - like not starting him back on his oral Prednisone for 4 days after having him on Solumedrol IV when he had pneumonia when we were in Florida. The nurse proceeded to tell me he didn't take Prednisone - but I had her pull up Earl's paper chart - and my copy of his med list was in there. I had wondered why his attitude was so grouchy - but he was going through steroid withdrawl.
If you are there when they are giving him his meds - ASK WHAT THEY ARE 'ADMINISTERING' - an make sure they tell you the name and the dose - not 'just him AM meds'. Being proactive is his best resource. Good luck to you, your Dad and the family.

((((HUGS))))

Beth
__________________
Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
Reply With Quote
  #6  
Old Thu Aug 16, 2012, 02:38 AM
maria&lola maria&lola is offline
Member
 
Join Date: Jul 2012
Posts: 34
Kim: So sorry about this difficult time. I hope your dad finds strength in being surrounded by loved ones. Prayers and hugs for you and yours.
Reply With Quote
  #7  
Old Thu Aug 16, 2012, 02:37 PM
Mydad Mydad is offline
Member
 
Join Date: May 2011
Location: Wilmington, Delaware
Posts: 15
Hi everyone - Yes he was put on levaquin 750mg, and we came home with a prescription of the same for the next 5 days. Milliken the fever is almost consistant. In cases before it would usually only be at night, but this time around it goes up and down all day long. Before we left the hospital they said there has been no bateria or any growth in the blood samples that they took in the hospital. We had to wait 5 days to see if anything would grow, but it all looks negative, the same for his urine.

Thank you to everyone again!!

Prayers!!!
__________________
Kim daughter of Phil 76; Diagnosed 2011 with MDS, Refractory anemia with excessive blasts; Diagnosed 2012 with AML; Treated with Vidaza and Dacogen; Currently only being treated with blood transfusions
Reply With Quote
  #8  
Old Thu Aug 16, 2012, 03:43 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Fever

Hi Kim,
Good with levaquin! Hope it will have effect!

I have been in the ER twice with fever and as soon as they had got all kinds of tests avd X-ray of the chest they put me on intra venous antibiotics. Both times they had effect within 4 hours. They never found any bacteria.
Kind regards
Birgitta-A
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT -4. The time now is 11:44 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org