Sepsis

[imckinne]

Has anyone had any experiences with sepsis (Gram neg)? We are getting day to day conflicting messages from mom's oncologist. She appears to be responding to the antibiotics and he is very positive that she can overcome this and get back to rehab (still trying to recover from brain and back bleeds during ATG administration - despite a transfusion her platelets dropped to 7000 while her blood pressure was still out of control from the ATG). At the same time, we are told there is some damage to her heart valve and that her gall bladder is "sludgy" because she's not eating well nor processing proteins well. He seems clear that coming back from sepsis will be a tough battle (remember she is extremely weak and 76 years old) and that there is a high likelihood that it will return when the antibiotics are stopped after 14 days. We still have no response to the ATG (4 1/2 weeks) and I believe he will do another BMB next week if she's stable and strong enough. She's been in the hospital now for 5 1/2 weeks. The sepsis caused so much pain throughout her body that she is now on a morphene pump (2 grams available every half hour). Although she does not appear to be in pain, she is so afraid of the pain that she just keeps pushing the button.

[Marlene]

Ilene,

Infections will eat up platelets and red cells so that is not unusual. In fact, all three lines can crash with infections and it takes awhile for the BM to recover from it. Why does the doctor think the sepsis will come back? Does she have a central line or picc line in that may be source of the infection? Do they know the source?

I would not expect to see a response from the ATG so soon and neither should your doctor. And I don't understand why he would do a BMB so soon. Many do not respond to ATG until 6 mos to 1 year out from treatment.

John too had sludge in his gall bladder for the same reason. He finally had to go on IV nutrition because he couldn't eat. IV nutrition has its challenges also. I would ask them about doing an NG tube (feeding through a tube into the tummy) and TPN (IV nutrition) to see if either is an option to help get her over the crisis.

Marlene

[imckinne]

The doctor seems to be reacting to day to changes as much as we are. She's now developed a gram pos bacteria as well and they've again adjusted the meds based on the cultures. She has a morphene drip and is keeping herself pretty well doped up because of body pain that seems to come on from the sepsis. Then she has no interest in food. We've started to bring her food from outside to motivate her to eat as she's sick of the hospital food after nearly 6 weeks. She's incredibly weak and she's really not showing much motivation to fight through this, although she also won't say it's time for hospice. After they brought her back from dropping pressures in response to the sepsis on Monday she told the aid we have we her that she was furious that they didn't let her die. I think the doc typically does a BMB 4 weeks out to look for changes in the marrow and that he believe he can hep her motivation if he can see some promising changes. He's saying he will see the changes in the marrow well before there are any changes in her counts. Mom is also very angry when we (her children) come to see her - mom is in Florida, I'm in Phila, sister in Georgia, brother in NY - she told us it makes it harder on her to let go when we're there. At this point we've all returned home and I'll continue to manage things via phone with the docs and nurses and see how the next few days go. All the nurses in the ICU are seeing her as near the end because of her physical and emotional condition but the doctor still seems to think she will pull through this.

[Marlene]

It is a difficult situation for your mom and you. It is so hard to see someone struggle mentally/emotionally with this disease as well as deal with the physical aspects. The drugs can and do effect your mental state.

John was at a very critical state at one point in his recovery and we saw the differing attitudes of the hospital staff. To this day, I credit his doc for his positive attitude in that it does make a difference. He projected hope, where other were convinced he wouldn't pull through. John was also very stubborn and was determined to pull through.

I assume they have her on Neupogen (white count growth factor) to boost her wbc. John had zero white cells for a good 3 months and during that period, they had him on several anti-bacterials, anti-virals and anti-fungals to prevent and at times treat infections. Sepsis and fungal infection were the biggest threat as well as c-diff.

Hoping for the best for your mom....M

[imckinne]

Thanks so much for your support! Mom's been a passive acceptor of everything since even the transfusions started. Her nature before illness was to always feel like a victim. This would all be easier if we actually saw her try to fight through each step but she doesn't and, in fact, will complain when they don't get her out of bed and complain when then try to get her out of bed...or walk...or eat...etc. She complains that the nurses are only nice to her because it makes them feel good and she is pushing us away now too. I know alot of the ups and downs are the drugs but it is wearing, especially when it's from a distance.

Yes, as far as I know they have continued the neupogen injections pretty much since the ATG treatment....and all the anti-everything meds which have been adjusted as the cultures have come through. They are still struggling to regulate her heart rate at the moment but there doesn't seem to be any major damage to her organs as yet so if they can keep the infection under control hopefully she'll begin to regain some strength in the next few days, I'm told she did try to eat a little bit today so maybe that's a good sign.

Thanks again!
Ilene