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MooseMom
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« on: September 11, 2012, 10:32:47 AM »

Does anyone have experience with drug-induced neutropenia?

I do weekly labs, and in the space of one week, my WBC went from 6 to 3.  I was retested this past Thursday, and my wbc had dropped to .95 with my absolute neutrophils dropping from 1311 (which was low to begin with) to (sit down...) 72!  I was also tested for CMV.

Called my tx team who wanted me to go straight to ER.  I was admitted and spent four days in hospital being treated with a general antibiotic.  They ran blood cultures and a urinalysis, and no one could find any infections agent or any source of infection.  My tx team then advised that I stop the acyclovir, which I've done.

The CMV results came back while I was in hospital, and they were negative.

I was released yesterday afternoon because I was asymptomatic.

This morning, the fever returned but I have no other symptoms.  My tx coordinator sent me for more labs, this time including another urinalysis, wbc, EBV, BKV and CMV (again).

All the time I was in the hospital, my BUN and creatinine have been really good and stable.

The prevailing theory is that this is a drug induced neutropenia and that adjustment of some of my meds may be required, assuming that no other virus is found and that there is no UTI.  I am to treat the fever when I feel it is necessary (they don't want me to take too much tylenol).

Have any of you had this experience?

Thanks so much for any stories.
« Last Edit: September 11, 2012, 10:34:29 AM by MooseMom » Logged

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MaryD
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« Reply #1 on: September 11, 2012, 01:36:58 PM »

While I was having chemo for lymphoma I was admitted to hospital six times with febrile neutropenia - for five days each time.  My neutrophil count dropped to zero each time - I was going for the world record.  The drugs I was on would not be the same as your post transplant regime though.

The oncology protocol was that if your temperature got to 38 degrees you should go to ER as it was regarded as bordering on catastrophic.  They never found an infection with me either.
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MooseMom
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« Reply #2 on: September 11, 2012, 02:14:23 PM »

MaryD, the hospital docs did mention that they see this quite often in chemo patients, so I hear what you are saying.  I know the drugs I'm taking are not the same as those you encountered during chemotherapy or in lymphoma, but maybe some of the underlying principles are the same.

My wbc fairly quickly rebounded back up to three, otherwise they wouldn't have let me come home.  I had never heard of drug induced neutropenia.  I've looked at the transplant patient binder that was issued to me, and not once was the word "neutropenia" mentioned, so I was unprepared for this.  I did find, however, under the section about labs an explanation of each test, and it says that a high wbc could mean infection while a low wbc could be caused by the drugs.  But it's not very informative.
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KarenInWA
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« Reply #3 on: September 11, 2012, 06:57:10 PM »

I am being watched for this right now. I don't have a fever or any other symptom, other than a low wbc. My tx neph raised my Myfortic from 180mg 2x/day to 360mg 2x/day, in hopes of being able to lower my tacrolimus. I absorb Myfortic really well. That gave me diarrhea off and on, and lowered my wbc. My neutrophils or leukophils or whatever it is that they're watching was a low normal, but since it was still in the normal range, I did not need a Neupogen shot. I have also been getting my hgb/hct watched, and so far have had 2 weekly Aranesp shots. I am having weekly blood draws since Aug 23rd. Oh, and they lowered my Myfortic back to 180mg 2x/day now, too.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
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« Reply #4 on: September 11, 2012, 07:56:59 PM »

Oh my God MooseMom did you get a transplant???
Sorry, I've been away for a while.  I'm so psyched for you!   But I'm very sorry about whatever it is that's going on.  But I do think I remember reading that the low WBC count can be caused by the drugs.  Wonder if the fever is just a symptom of low WBC?   I guess that doesn't make any sense.
Sorry I can't help, but I hope you get past this quick.
I'm sending you hope for a speedy recovery.
 :cuddle;
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MooseMom
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« Reply #5 on: September 11, 2012, 09:33:43 PM »

But I do think I remember reading that the low WBC count can be caused by the drugs.  Wonder if the fever is just a symptom of low WBC?   I guess that doesn't make any sense.
Sorry I can't help, but I hope you get past this quick.
I'm sending you hope for a speedy recovery.
 :cuddle;

You are right, fearless.  A low WBC CAN be caused by the drugs, but I can see where the tx people would want to rule out various funky viruses first.  And you are right again in wondering if the fever is just a symptom of a low WBC.  Yes, it certainly can be.  I didn't know any of this until this past weekend!  I suspect that the end result might well be a change in the drugs/dosages.  But right now, it's just a waiting game.

Your kind thoughts are a big help; thank you! :cuddle;
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MooseMom
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« Reply #6 on: September 11, 2012, 09:40:20 PM »

I am being watched for this right now. I don't have a fever or any other symptom, other than a low wbc. My tx neph raised my Myfortic from 180mg 2x/day to 360mg 2x/day, in hopes of being able to lower my tacrolimus. I absorb Myfortic really well. That gave me diarrhea off and on, and lowered my wbc. My neutrophils or leukophils or whatever it is that they're watching was a low normal, but since it was still in the normal range, I did not need a Neupogen shot. I have also been getting my hgb/hct watched, and so far have had 2 weekly Aranesp shots. I am having weekly blood draws since Aug 23rd. Oh, and they lowered my Myfortic back to 180mg 2x/day now, too.

KarenInWA

I suspect it is the neutrophils they are watching, although I could be wrong.  It's all such a balancing act, isn't it!  No one at the hospital mentioned Neupogen since my wbc was still low but was rebounding nicely, hence my release, but since I awoke this AM with a fever, I wouldn't be surprised if the labs I had today showed a relapse of sorts.

That's interesting that they went back to your lower Myfortic dose.

I guess you don't know how your body will react to these drugs until it is exposed to them.  We all know that the first several months after initiating dialysis are often the toughest, and I guess the same is true of transplants.  It takes time, patience and a lot of trial and error before you find just the right way to do things for your own body.  Everyone's different.

I hope you get things sorted soon.
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« Reply #7 on: September 11, 2012, 10:44:33 PM »

Sorry to hear MooseMom. Mine was explained with the diagnosis of CMV at the time and also ended up taking neupogen injections due to WBC also getting to low.
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Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
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Guide Dog by end of July 2012
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« Reply #8 on: September 12, 2012, 04:52:21 AM »

Not happy to read this stuff.  Not happy at all.  I really hope it gets sorted very soon MM. 
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MooseMom
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« Reply #9 on: September 12, 2012, 12:22:22 PM »

Before starting this thread, I did do a search for this topic but found next to nothing.  So, I will provide the occasional update in the hopes that this thread might help to educate future IHDers who are also experiencing this problem.

We got my labs back from yesterday, and they are worse than I expected.  My absolute neutrophils are now down to 8.  Surely there is some sort of prize for that.  My tx team is beyond frustrated that my local hospital didn't start me on Neupogen; the hospital did everything else right, but there obviously was a lack of communication somewhere.  Apparently the whole point of sending me to the ER was to be admitted and then to start on Neupogen.  I wish that had been made clearer to me. ::)  At least I am now a more educated patient.

Of course my PCP's/neph's office is closed today (Wednesday)  ::), so tomorrow my tx coordinator (who is also off on Wednesdays ::) ::) ::) ) will call and set up a schedule for these injections. (I've been working with her backup, who I think is more efficient than she is).

In the meantime, it has been pretty much established that I have drug induced neutropenia as none of my tests for various bacterial and viral infections came back positive.  So the plan for today (since my PCP's office is closed) is to stop the Myfortic altogether (I had already stopped the acyclovir) and to increase my prednisone from 10 mg back up to the initial 30 mg.  They don't like for you to take this much pred for very long, so I am assuming that once the injections start taking effect, my pred will be reduced and perhaps the Myfortic, in a reduced dosage, will be reinstated (but that's just a guess).

The coordinator called the IV infusion dept at my local hospital and asked if they could see to me today, but they refused, saying they needed an order from my PCP since the tx clinic was not local. ::)  ::)  ::)  ::)  ::)  ::)   I don't think the tx people trust my local hospital anymore!

One interesting bit of info I learned was that prednisone actually HELPS to build white blood cells.

Anyway, I'm posting this hoping that it might help someone.

Can you believe it...an ANC of 8!
« Last Edit: September 12, 2012, 12:24:34 PM by MooseMom » Logged

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MaryD
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« Reply #10 on: September 12, 2012, 04:15:47 PM »

Be aware that Neupogen shots can give you aching bones.  I think it is usually in the long bones.  Mine wasn't too bad.

Good luck
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« Reply #11 on: September 12, 2012, 08:15:36 PM »

I had to give the neupogen shots myself and did not have to gop into a clinic, but maybe that's because I was a diabetic and use to giving injections? They come in a prefilled syringe in a packet of 12 or 6 without looking at my package.
 
Hopefully that will work for you MooseMom. Just be aware of the potential side effects of Neupogen, the one I had was painful even lying still. Well your experience is not uncommon to me. I experience odd things between Northwestern and my local hospital, even between my local doctors and the transplant center.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?

I do not except friend request on Facebook without a message telling me who you are.
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« Reply #12 on: September 13, 2012, 05:04:15 AM »

I had Neupogen shots before and after transplant and had the flu-like symptoms. The shot burns a bit going in, and if you are over 100 pounds or so you will probably need two injections per dose since there is a limit to how much they can administer in one go (or at least that's what we were told). Gwyn had to have two injections at a time poor guy.

Yes, it sounds like you have essentially no immune system. I went through that, it was scary. I am not familiar with the value you are using, but the one I had the normal range was 2.5-4 or something similar and I was at .2 Have they advised you to follow the neutropenic diet? Sounds like they should have....

Hope things turn around for you quickly, MM. You're in my thoughts.
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KarenInWA
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« Reply #13 on: September 13, 2012, 08:58:44 AM »

I am sitting here in my transplant clinic awaiting my Neupogen shot. I didn't notice a whole lot of pain the last time. I may have taken a couple of tylenol to deal with it. Still no fever, but I do have off and on stomach issues.

KarenInWa
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
MooseMom
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« Reply #14 on: September 13, 2012, 09:13:00 AM »

I am sitting here in my transplant clinic awaiting my Neupogen shot. I didn't notice a whole lot of pain the last time. I may have taken a couple of tylenol to deal with it. Still no fever, but I do have off and on stomach issues.

KarenInWa

Wait, what am I missing here?  Now they have decided you need Neupogen?  And you refer to "last time"; does this mean that this will be your second shot?  Did your ANC finally go so low that your tx team decided it had to be treated with these injections?  I'd like to hear more about your experience if you feel like posting about it.  I'm sorry about your stomach issues.  How many injections do you think you will need?  How low did your absolute neutrophil count drop?

@ Cariad, my lab uses the following guideline/normal range parameters:  the normal range is 1500-7800 absolute neutrophils.  I have 8.  So, you see the problem.  LOL!  And yes, I've been following the neutropenic diet since admission into hospital.

My tx coordinator just called, and she wants me off the allopurinol (for gout prevention), too.  So, I am off allopurinol, myfortic and acyclovir and am on the trebled dosage of prednisone.  I will have a shot today and tommorow and will also have labs tomorrow for another test of my wbc/anc.  Since I will be in Madison on Monday anyway for a bit of a holiday (there's some interesting things to see in Madison!), I'll go for another wbc lab at the tx center, and then will have complete labs on Wednesday morning before my scheduled monthly tx appt.  Hopefully I will not need a third shot, apparently most tx patients don't, but we'll see.  And on Wednesday, we will talk about modifying my meds.

So, that's the plan.  Of course, it may be a different plan that other future tx IHDers will receive, but hopefully this experience will give some guidance.

BTW, my tx coordinator said that this is certainly not uncommon and that they have a lot of patients who react this way to the meds.  She told me not to be too concerned, and that made me feel better.
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KarenInWA
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« Reply #15 on: September 13, 2012, 09:21:28 PM »

MM - yes, I knew I was going to need a Neupogen shot sooner or later, since my wbc was getting lower, as was those -phils they look at. It was only a matter of time. I had to have Neupogen shots earlier this year, in March. I remember having 2 of them. So today, I had the shot, went to work, started noticing that my bones were aching (felt like I needed a massage) so I popped 2 extra-strength tylenol and now I'm feeling better. My dr discontinued my Myfortic, and I go in to see her on Monday. I haven't been seen by a dr since Aug 23rd. I have just been going in every week for lab draws, then a dr looks at them and orders Aranesp and/or Neupogen as needed, which is then administered by a nurse. This is all done at my transplant hospital, but it is only about 15 miles away from home.

So, today, my lab values were as follows:

WBC 1.73
Neutrophils 0.88 THOU/uL (normal is 1.80-7.00)
Lymphocytes 0.56 THOU/uL (normal is 1.00-4.80)

That is what prompted the Neupogen shot, and stopping the Myfortic.

HGB was 9.4 and HCT was 30%. At least that's starting to be on an upward spiral. May it continue!

Creatinine is at the lowest it's been since my post-biopsy fiasco. It was 3.46. I am going to keep popping a cranberry pill a day (okayed by my tx neph) because that seems to be working. I had started to do that a while ago, and had good results, then I got lazy when I had my summer cold (for over a month). My creat went from 3.49 to as high as 4.3 and then it went down again from there, slowly. I will do whatever it takes!!!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
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« Reply #16 on: September 13, 2012, 10:24:18 PM »

I wonder if this happens more commonly with Myfortic. Jenna isn't taking that, she's got Cellcept and Prograf.
Jenna's WBC dropped to 2 when she had the IVIG and ATG for rejection. They didn't want me to bring her home, but I told the doctor I was more capable of controlling exposure to germs at home than the hospital was. After 2 neupogen shots she improved.
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Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Here's her bio on Living Kidney Donor Search http://www.livingkidneydonorsearch.com/our-stories2/jenna-franks2/
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« Reply #17 on: September 22, 2012, 04:31:03 PM »

First Congrats on your successful transplant! So happy for you!

My WBC dropped really low also and I felt ill and could hardly walk. TX lowered CMV med and Myfortic, started the neupogen shots immediately. I was off work another three months because of this, was told not to go in public or wear a mask if I had to, and keep sick people out of my home. It was kind of depressing having no social life for three months in the middle of winter.  That was over a year ago and I have not had a problem since. I did meet a transplant patient who had to have neupogen shots every month for a long time, not sure why.
I researched this and read that 120 days after transplants it is common for wbc count to drop due to cellcept.

Hoping you feel better real soon!
Olivia
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« Reply #18 on: September 22, 2012, 06:01:05 PM »

Sorry to hear about all these interreactions MM.  I've asked Gregory if he ever had this, and he's like Chris, when he used to get fevers they turned out to be CMV.  I'm glad you don't have that.  Hopefully it is related to meds and they find the right balance?  That seems to be the process you are describing isn't it.   Gregory hasn't even had neupogen shots.  How are you doing now, what's the update since wednesday?
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Natalya Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #19 on: September 23, 2012, 02:55:20 PM »

Sorry to hear about all these interreactions MM.  I've asked Gregory if he ever had this, and he's like Chris, when he used to get fevers they turned out to be CMV.  I'm glad you don't have that.  Hopefully it is related to meds and they find the right balance?  That seems to be the process you are describing isn't it.   Gregory hasn't even had neupogen shots.  How are you doing now, what's the update since wednesday?

It is related to the meds, and like olivia posted, neutropenia does seem to be fairly common right about now in the post tx period.  Live and learn.  I happened to have a tx clinic visit already schedule, so I was able to get more information.  I had labs done, and it looks like the two neupogen shots worked a bit too well as now I have so many wbcs that I think I can see all sorts of germs scampering away from me, I'm so lethal.  LOL!  I'm back on my former dosage of myfortic which I find a bit disconcerting, but the tx people say that while there IS a chance I could have another neupogenic episode, it is more probable that I will not, but no one can see into the future in this regard.  If the same thing happens again soon, then they will know that my body just can't handle that much myfortic, and they'll start experimenting with dosages.

When I got the call and got to the tx hospital, I met the man who was getting the donor's other kidney.  His surgery was right after mine.  It so happens that I have seen him at each of my three clinic visits.  At this past visit, he told me he had come down with two viruses but he didn't know which ones (how could a tx recipient not know this?), so he's had some problems with low white blood cell counts, too, although he is actually sick with something.  I came through this fairly unscathed, and I'm grateful for that.  But it did take a good two weeks to get through the whole palaver, and just today I had my first two mile walk since all of this started.

But the funny thing is that the thing that made me the most physically uncomfortable was the reaction I had to the anti-fungal suck troche I use twice a day.  Some people get the Nystatin swish, and some get the troche.  I got the troche, and the day that my wbc tanked, I noticed that when I brushed my teeth one morning, and my gums hurt.  Two weeks later, I was in real pain.  I've NEVER had any dental problems, but I couldn't eat or drink without grimacing in pain, and you could SEE my gums were inflamed.  I couldn't touch the roof of my mouth with my tongue without so much pain.  I assumed it was the myfortic, but it only got worse after the myfortic was stopped.  It finally dawned on me that it had to be the troches, so I just stopped them (I had only one more week to go), and within 24 hours, there was a dramatic improvement.  Of course, the tx people had never heard of such a reaction, which I find hard to believe.

Have any of you had this sort of reaction?

Olivia, you must have been miserable!  Your story sounds just awful! :cuddle;
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"Empathy is the soul of democracy."  Jeremy Rifkin
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