Post Soliris and/or Post Transplant by the numbers

[Bill Biermann]

I know most of our "numbers"  are posted in various Forums, primarily under "Soliris",  so one of our goals will be centralizing the numbers under this forum in the future.   Some of the numbers will be Soliris only, no Transplant, and some will be Post Transplant, post Soliris.

 

Situation:  Nathan:  11 year old, on Dialysis for 5 years.   Transplant with Soliris.  Live Donor

 

7 days before Transplant date:  Treated with Plasma Pheresis, and Soliris

1 day before Transplant date:  Treated wtih Plasma pheresis and Soliris

 

Numbers comparison

 

                             30 days                   2 hours               24 hours                   72 hours

                        Before Transplant      after Transplant     After Transplant        after Transplant

 

Creatinine              8                            4.2                        .9                             1.1

BUN                     65                            9                          16                          20

Hemoglobin          10                          10                          11                           9

Hematocrit            28                          29                        26                           26

LDH                    630                          350                     440                         440  

Platelets            145                           130                     120                        140      

 

Observation:   some of the stellar numbers that we see elsewhere after Soliris  (In NON TRANSPLANT CASEs)  are not necessarity here,, but we are quite satisfied at this point in time.  We just want to stress that many cases may be non linear, and won't follow a perfect pattern.

 

 

 

[Linda Burke]

Thanks for adding these lab values for our 'numbers people', Bill.  It's good to learn that things seem to be going well for your family!  (I've reposted this with a blog on the Home Page so that our aHUS Face Book community can enjoy the good news as well.)

 

[Nicolas]

Hello Bill,

Great idea. I try to centralize the numbers of Lou-Anne. Yesterday, his creatinine was at 6, 10 hemoglobin and more than 200 000 Platelet.

2 hours before transplantation his creatinine was at 58.

Regards

Nicolas

[Cheryl Biermann]

Sorry #s folks, I had EVERY lab drawn their lab values , ect.  and then it wound up in the wrong place, so this time around I'll just go with boderline #s, and abnormal #s...

 

Creatnine is up from 1.17 to 1.36 his labs were early so this # may be influenced by fluids, we go back for finger stick tomorrow.  Nomal Values:  .31-.88

Phosphorous 3.5 (L) Normal Values:  3.7-5.6

Chloride:  109 (H) Normal Values:  98-107

Calcium 9.9  Normal Values 8.9-10.1  Special concern to Nathan as he had lots of calcium deposits in his urine, we are following this up with a 24 hr. urine collection/labs to determine if he runs a greater than normal risk for kidney stones.

 

RBC:  3.03 (L)  Normal: 4-5.20

Hgb:  9.2 (L) Normal:  11.5-15.5

Hct:  27.6 (L)  Normal:  35.-45.

Magnesium is 1.6 Normal: 1.6-2.3

LDH:  312 (L)  Normal 432-700  Not discussed

Here are the specific aHUS #s

C3: 109    Normal: 85-193

C4:  27     Normal: 12-36

 

[Cheryl Biermann]

   Stopping Epo for now!  Down to 30 meds daily!
   Patient: BIERMANN,NATHANIEL T  
   Accession Tacro
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Therapeutic Range
   Tacro Nephrology(ng/ml):                 8.9                             3.0-12.0

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
                                    

-------------------------------- 

   
   
   Patient: BIERMANN,NATHANIEL T  
   Accession  MAGNESIUM
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   Mg(mg/dl):                               1.6                             1.6-2.3

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  (ACC)  

   Accession  RENAL FUNCTION PANEL
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   Na(mmol/L):                              144                             137-145
   K(mmol/L):                               4.0                             3.5-5.1
   Cl(mmol/L):                              107                              98-107
   CO2(mmol/L):                             22.9                             18-27 
   Glucose(mg/dl):                          84                               70-106
   BUN(mg/dl):                              13.1                              7-18 
   Calcium(mg/dl):                          10.5             H              8.9-10.1
   Alb(gm/dl):                              5.0                             3.7-5.6
   Phos(mg/dl):                             2.3              L              3.7-5.6
   IDMS Crea, S(mg/dl):                     0.87                           0.31-0.88

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  
   CBC W AUTO DIFF
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   WBC(K/cumm):                             6.05                            4.5-14.5
   RBC(mill/cum:                            3.73             L             4.00-5.20
   Hgb(gm/dl):                              11.4             L             11.5-15.5
   Hct(%):                                  35.4                           35.0-45.0
   MCV(cu micro:                            94.9                           77.0-95.0
   MCH(uug):                                30.6                           25.0-33.0
   MCHC(%):                                 32.2                           31.0-37.0
   RDW(%):                                  17.2                                   
   MPV(fl):                                 10.3                                   
   Platelets(K/cumm):                       216                             100-400
   Gran(%):                                 50.8                             24-66 
   Lymph(%):                                40.3                             22-61 
   Mono(%):                                 8.4                               3-15 
   Eos(%):                                  0.3                               0-10 
   Baso(%):                                 0.2                               0-1  
   Manual Diff:                             Automated Diff                         
                                            Performed                              

[Linda Burke]

Thanks for posting these.....how's Nathan's energy level, eating, and focus for schoolwork doing with these numbers?  All the best to you all, such an amazing family!

Cheryl Biermann said:

   Stopping Epo for now!  Down to 30 meds daily!
   Patient: BIERMANN,NATHANIEL T  
   Accession Tacro
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Therapeutic Range
   Tacro Nephrology(ng/ml):                 8.9                             3.0-12.0

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
                                    

-------------------------------- 

   
   
   Patient: BIERMANN,NATHANIEL T  
   Accession  MAGNESIUM
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   Mg(mg/dl):                               1.6                             1.6-2.3

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  (ACC)  

   Accession  RENAL FUNCTION PANEL
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   Na(mmol/L):                              144                             137-145
   K(mmol/L):                               4.0                             3.5-5.1
   Cl(mmol/L):                              107                              98-107
   CO2(mmol/L):                             22.9                             18-27 
   Glucose(mg/dl):                          84                               70-106
   BUN(mg/dl):                              13.1                              7-18 
   Calcium(mg/dl):                          10.5             H              8.9-10.1
   Alb(gm/dl):                              5.0                             3.7-5.6
   Phos(mg/dl):                             2.3              L              3.7-5.6
   IDMS Crea, S(mg/dl):                     0.87                           0.31-0.88

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  
   CBC W AUTO DIFF
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   WBC(K/cumm):                             6.05                            4.5-14.5
   RBC(mill/cum:                            3.73             L             4.00-5.20
   Hgb(gm/dl):                              11.4             L             11.5-15.5
   Hct(%):                                  35.4                           35.0-45.0
   MCV(cu micro:                            94.9                           77.0-95.0
   MCH(uug):                                30.6                           25.0-33.0
   MCHC(%):                                 32.2                           31.0-37.0
   RDW(%):                                  17.2                                   
   MPV(fl):                                 10.3                                   
   Platelets(K/cumm):                       216                             100-400
   Gran(%):                                 50.8                             24-66 
   Lymph(%):                                40.3                             22-61 
   Mono(%):                                 8.4                               3-15 
   Eos(%):                                  0.3                               0-10 
   Baso(%):                                 0.2                               0-1  
   Manual Diff:                             Automated Diff                         
                                            Performed                              

[Cheryl Biermann]

Linda Burke said:

Thanks for posting these.....how's Nathan's energy level, eating, and focus for schoolwork doing with these numbers?  All the best to you all, such an amazing family!

Cheryl Biermann said:

   Stopping Epo for now!  Down to 30 meds daily!
   Patient: BIERMANN,NATHANIEL T  
   Accession Tacro
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Therapeutic Range
   Tacro Nephrology(ng/ml):                 8.9                             3.0-12.0

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
                                    

-------------------------------- 

   
   
   Patient: BIERMANN,NATHANIEL T  
   Accession  MAGNESIUM
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   Mg(mg/dl):                               1.6                             1.6-2.3

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  (ACC)  

   Accession  RENAL FUNCTION PANEL
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   Na(mmol/L):                              144                             137-145
   K(mmol/L):                               4.0                             3.5-5.1
   Cl(mmol/L):                              107                              98-107
   CO2(mmol/L):                             22.9                             18-27 
   Glucose(mg/dl):                          84                               70-106
   BUN(mg/dl):                              13.1                              7-18 
   Calcium(mg/dl):                          10.5             H              8.9-10.1
   Alb(gm/dl):                              5.0                             3.7-5.6
   Phos(mg/dl):                             2.3              L              3.7-5.6
   IDMS Crea, S(mg/dl):                     0.87                           0.31-0.88

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  
   CBC W AUTO DIFF
   Specimen: Blood              Collected: 09/30/11 0835
   Result Name                              Results                       Reference Range
   WBC(K/cumm):                             6.05                            4.5-14.5
   RBC(mill/cum:                            3.73             L             4.00-5.20
   Hgb(gm/dl):                              11.4             L             11.5-15.5
   Hct(%):                                  35.4                           35.0-45.0
   MCV(cu micro:                            94.9                           77.0-95.0
   MCH(uug):                                30.6                           25.0-33.0
   MCHC(%):                                 32.2                           31.0-37.0
   RDW(%):                                  17.2                                   
   MPV(fl):                                 10.3                                   
   Platelets(K/cumm):                       216                             100-400
   Gran(%):                                 50.8                             24-66 
   Lymph(%):                                40.3                             22-61 
   Mono(%):                                 8.4                               3-15 
   Eos(%):                                  0.3                               0-10 
   Baso(%):                                 0.2                               0-1  
   Manual Diff:                             Automated Diff                         
                                            Performed                              

[Cheryl Biermann]

Nathan's energy level is great, he is doing really well at school, (homebound).  Something I have hesitated to post because we're not sure what it means is that it has been impossible the last few clinic visits to get finger sticks, the blood clots before it gets into the tube, so they've had to stick him.  His fingers are occassionally getting very white and Dr. Wood says it is taking too long to pink up--you know the "test" where they press down and wait for the color to come back.

It could be from Tacro or Zonisimide, but that doesn't make sense because he has had to two meds decreased.  Labs continue to look really good at least!

[Cheryl Biermann]

 Result Name                              Results                       Reference Range
   LDH(Units/L):                            437                             432-700

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  (MDC)   Acct #: A1129890414
   Accession # 4006366 COMPLEMENT C4
   Specimen: Blood              Collected: 10/25/11 0845
   Result Name                              Results                       Reference Range
   C4 Complement(mg/dl):                    17                               12-36 

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  (MDC)   Acct #: A1129890414
   Accession # 4006366 RENAL FUNCTION PANEL
   Specimen: Blood              Collected: 10/25/11 0845
   Result Name                              Results                       Reference Range
   Na(mmol/L):                              144                             137-145
   K(mmol/L):                               3.8                             3.5-5.1
   Cl(mmol/L):                              109              H               98-107
   CO2(mmol/L):                             21.8                             18-27 
   Glucose(mg/dl):                          92                               70-106
   BUN(mg/dl):                              17.5                              7-18 
   Calcium(mg/dl):                          9.8                             8.9-10.1
   Alb(gm/dl):                              4.6                             3.7-5.6
   Phos(mg/dl):                             3.4              L              3.7-5.6
   IDMS Crea, S(mg/dl):                     0.74                           0.31-0.88

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  (MDC)   Acct #: A1129890414
   Accession # 4006366 COMPLEMENT C3
   Specimen: Blood              Collected: 10/25/11 0845
   Result Name                              Results                       Reference Range
   C3 Complement(mg/dl):                    88                               85-193

-------------------------------- 

   FACILITY: Cardinal Glennon Childrens Hospital
  
   Patient: BIERMANN,NATHANIEL T  (MDC)   Acct #: A1129890414
   Accession # 4006364 CBC W AUTO DIFF
   Specimen: Blood              Collected: 10/25/11 0845
   Result Name                              Results                       Reference Range
   WBC(K/cumm):                             7.85                            4.5-14.5
   RBC(mill/cum:                            3.72             L             4.00-5.20
   Hgb(gm/dl):                              11.2             L             11.5-15.5
   Hct(%):                                  34.6             L             35.0-45.0
   MCV(cu micro:                            93.0                           77.0-95.0
   MCH(uug):                                30.1                           25.0-33.0
   MCHC(%):                                 32.4                           31.0-37.0
   RDW(%):                                  15.6                                   
   MPV(fl):                                 10.3                                   
   Platelets(K/cumm):                       208              &              100-400
   Gran(%):                                 46.9                             24-66 
   Lymph(%):                                45.7                             22-61 
   Mono(%):                                 6.1                               3-15 
   Eos(%):                                  0.8                               0-10 
   Baso(%):                                 0.5                               0-1  
   Manual Diff:                             Automated Diff                         

 

                                            Performed                              

 

H&H & RBC low, C3 is also lowish, platelets are still dropping, none of these are alarming, the C3 is actually in the normal range but barely.  Our Prograff dropped to 5.9 (they want 8ish) and want to redo the AH50 also. LDH had been low, it is now in the normal range.  All seems well.

[Bill Biermann]

I just wanted to point out that not everyone's numbers will be super fantastic right away.  As you can see, Nathan has some glithces, and it took a while (6 weeks) for his numbers to get back into an acceptable range.   So be "proactive "  but patient at the same time.

[Cheryl Biermann]

Haven't posted in a while, but for anyone following along to see what happened after his increase from 600-900mls, to platelets especially, here are todays numbers. The platelets had gone back up to the 220s, (his norm), but have fallen to 190s again, so we will watch.  It could be he just needs his meds more frequently.  These are not numbers to sneeze at, though.

Hey Cheryl
Here are Nathan's Labs for the day:
 
WBC: 4.05
Hemoglobin: 12.2
Hematocrit: 37.8
Platelets 190
 
Sodium:145
Potassium: 3.5
Cloride 118
Bicarb 24.7
BUN 19
Creatinine: 0.62
Glucose: 87
Calcium 9.8
Phosphorus 3.9
Magnesium: 1.9
 
LDH 576
C3 97
C4 23
 
Prograf 6.8
 
That is all the results that are back at this time! Hope this helps!!
katie

*note the LDH is still in the 500s.

[Cheryl Biermann]

Nathan was in heaven, the infusion center was to full so we went to the floor.  He had his "dream up and down bed", and cable tv, what more could he ask for? 

We are post transplant 6 months so it is time to come off one of the anti-viral meds, Valcyte.  Because CMV is one of the most common post transplant infections, the doctors have decided to continue treatment with cytogam infusions.  Valcyte can cause low white counts and Nathan's dropped into the twos last week.  Today his pre medicine labs showed the wc had climbed back up to the 4s, so I guess the Soliris infusion last week helped him be able to make them somehow.  We were ready to take him off Bactrim as well for the same reason but now will wait and see what happens.

 

We go in again next week for another Soliris infusion and will move to a two week schedule for Cytogam then.  Labs were better overall with platelets climbing into the 200s again, LDH is actually lowish, wc climbed H&H remains good.