Hello, everyone. My last round of posts was in this forum area (subject: Mom is in ICU fighting for her life). I'll do a quick summation as background - she received a fecal transplant (3rd bout of c. diff after she went into severe septic shock) during this visit (that I posted about on this form) and everyone (especially her health care team) was amazed that she made it and fought against all odds. She went to a rehab facility after that stay for two weeks, came home and did amazing for four months. Her first appointment back to her oncologist after that 2 months in the hospital, they shocked us with the fact that during that time, her multiple myeloma actually IMPROVED. She was responding amazingly well on treatment (VRD), started eating again, gained a bit of weight, we took the wheelchair back, took down the wheelchair ramp and hospital bed. We were careful with making sure she was not under and chance for getting another infection (she was seen by an infectious disease specialist at the cancer center, RPCI) and she started monthly IVIG therapy. She had a flex sig to confirm the c. diff was gone and her colitis was almost completely disappeared. She had two kyphoplasties to repair 7 of her compression fractures. Then, they told us she was in near remission, so she had her stem cells collected for future SCT. Then, her oncologist wanted to put her on bone strengthener, but she had to have a dental consult. So, the dentist at RPCI said she needed work done (extractions and fillings), she prescribed an prophylactic antibiotic and I was very concerned and insisted that it go through the infectious disease doc. He said it was fine, so about 2 weeks after her last extraction (and antibiotics) she stopped eating and I insisted she go to RPCI as an inpatient. They worked her up for sepsis and started the broad spectrum antibiotics, as per protocol. They never really determined the cause of the infection, sent her home after a week, she progressively declined at home (she lives with my father) and we had to fight with her for two days to bring her in (she went into the infusion center at RPCI) to be evaluated, they gave her platelets and fluids and ended up admitting her to the ICU. So, that was last weekend, the following day the cultures came back + for c. diff (4th bout) and she began symptoms of c. diff that night. They planned for D/C yesterday (ramp had to go back up, hospital bed had to come back and we got a new wheelchair). The entire week she hardly ate a thing and has never been able to tell us why she can't eat. I asked for a palliative consult b/c of the lack of eating and her ambivalence (she says she always feels "great" and won't be straight with anyone), so yesterday, the palliative doc told me she has an albumin level of 1.0 and she thinks" her disease stage is at the end" (as she put it. I'm in medicine, but come on!). I said she is in remission, and she is sick with c. diff and not eating well. Her oncologist (actually his PA that knows my mother best) completely disagrees with the palliative doc b/c they know her (over the past year) and know that she is really sick and then fights back and then thrives. She's young (68) and that this is all treatable. The palliative doc said she will have a meeting with my mother's oncologist this week to hash this out, and she said she'll refer to his judgment, but doesn't know where we go with an albumin level of 1.0. The PA for the oncologist that I told this all to wants to wait and see how mom does at home (they're going to RPCI for blood work and to be evaluated) and then we have an appointment on Thursday with the oncologist to see where we're going (and to get her officially remission status upon the last disease staging) and didn't want to rush to judgment when she has an active infection and she's in the hospital.
I guess I'm just looking for opinions and what the "experts" think. I haven't slept in days and the only person that I've told this to is my fiancé (we're getting married next May - I've postponed the wedding 2x due to my mother's hospitalizations). My parents have been married for 43 years and my father has been the sole caregiver of my mother and I honestly don't know how he has done it 24/7, but he's so optimistic, this would literally kill him. They've worked hard all their lives, just retired, have a winter home in Florida and they should be livin' the life right now. It's heart-wrenching. Thanks for reading...
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Albumin is 1.0, need opinions
I got a case of C-diff shortly after my chemo dose at the start of my SCT. I know it is persistent, but an anti biotic did put it down. I was told it's a normal bacteria in the system held in check by other bacteria, but it's more persistent in some cases. In my case after the chemo reduced the good bacteria. You bring up septic which makes me wonder if they have done a colonoscopy to check for the source of her septic?
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Albumin is 1.0, need opinions
Hi Wayne. She had sepsis from her c. diff. Unfortunatly with my mother, she doesn't let anyone know how she feels and by the time I access her and know in my gut she's in a septic state and get her to the hospital, it's already a raging infection. The assays they do for c. diff in the hospital setting now are pretty fool-proof that when the cultures come back positive for c. diff, it's pretty certain. Doing a colonoscopy in a patient with severe coilitis caused by c. diff is contraindicated b/c the procedure can perferate the colon.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Albumin is 1.0, need opinions
Dear veganmartin,
I am so sorry that your mother has had such a hard time with recurrent bouts of C. Diff. colitis. It is truly an awful infection and I am glad she is getting out of the hospital.
It is not unusual for the serum albumin level to drop preciptously in the setting of severe infection. The lack of good oral intake recently certainly is contributing.
As the C. Diff. infection comes under control, her appetite should pick up. As her oral intake improves and she is further removed from the 4th bout of C. Diff., the albumin levels should start to climb. You might want to ask her myeloma physician if she is losing any albumin in her urine. The presence of high levels of albumin in the urine can be a sign of kidney damage from amyloidosis, a condition that can affect ~10% of patient with multiple myeloma. If her appetite does not pick up quickly with control of the infection, an appetite stimulant (at least temporarily) may be in order.
Given the severity and persisting nature of the infection, it would be worth while addressing the possibility of a more prolonged course of therapy for the C. Diff. this time around.
A low serum albumin level in the setting of what your mother has been through does not mean that her myeloma is worse. Her myeloma physician has likely been monitoring her response to therapy over time, and it sounds as though she has responded well to treatment, which is great.
I hope this is helpful. Please let me know if you have any other questions.
Hang in there and have a great wedding!
Pete V.
I am so sorry that your mother has had such a hard time with recurrent bouts of C. Diff. colitis. It is truly an awful infection and I am glad she is getting out of the hospital.
It is not unusual for the serum albumin level to drop preciptously in the setting of severe infection. The lack of good oral intake recently certainly is contributing.
As the C. Diff. infection comes under control, her appetite should pick up. As her oral intake improves and she is further removed from the 4th bout of C. Diff., the albumin levels should start to climb. You might want to ask her myeloma physician if she is losing any albumin in her urine. The presence of high levels of albumin in the urine can be a sign of kidney damage from amyloidosis, a condition that can affect ~10% of patient with multiple myeloma. If her appetite does not pick up quickly with control of the infection, an appetite stimulant (at least temporarily) may be in order.
Given the severity and persisting nature of the infection, it would be worth while addressing the possibility of a more prolonged course of therapy for the C. Diff. this time around.
A low serum albumin level in the setting of what your mother has been through does not mean that her myeloma is worse. Her myeloma physician has likely been monitoring her response to therapy over time, and it sounds as though she has responded well to treatment, which is great.
I hope this is helpful. Please let me know if you have any other questions.
Hang in there and have a great wedding!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Albumin is 1.0, need opinions
Thank you so much, Dr. Voorhees. I was hoping someone would prescribe an appetite stimulate. I will ask about the albumin level in her urine and if that's been tested. Thank you. I feel much better now. The past two days she's been sleeping constantly and her oral intake is near nothing. Now, just applesauce and Liquacel (when she was on dialysis they suggested this to improve her protein intake and we're still now giving it). This is her "M.O." for when she's critically ill - sleeping constantly and not engaging in conversation. People that don't know her history think that this is showing she's giving up.
Her GI doc has prescribed oral vanco for 30 days and he will see her in his office on 10/31. He may decide if things have not improved that he may do a second fecal transplant.
We will take her back to RPCI tomorrow for blood work and assessment. We will see what tomorrow brings.
Her GI doc has prescribed oral vanco for 30 days and he will see her in his office on 10/31. He may decide if things have not improved that he may do a second fecal transplant.
We will take her back to RPCI tomorrow for blood work and assessment. We will see what tomorrow brings.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Albumin is 1.0, need opinions
Hi everyone. She's back in the hospital (since yesterday) on the advice of her GI doc. He suggested a feeding tube and she didn't fight it. So, it went in tonight and I pray this will help turn things around for her so she can fight off this infection and be able to enjoy her remission.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Albumin is 1.0, need opinions
Her GI doc saw her last night and we're going to proceed with a PEG tube on Monday and then she will be discharged. Her platelets are trending up from these past 3 hospitalizations over the past 30 days. Pre-albumin is now in the normal range, albumin is still low but obviously that's going to take some time to come around. She is still very sleepy, a bit confused but I want her home.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Albumin is 1.0, need opinions
Glad to hear that your mother's condition is improving, Kristen, and I'm glad you took the time to post an update. I hope your mother's numbers continue to improve. I also totally understand your desire to have her back home. Good luck!
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JimNY
8 posts
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