Kidney Disease Support

Question:

- Hide quoted text — Show quoted text -"BJ" <B…@sk.nojunk.ca> wrote in message <news:urjg9gjgfuto0d@corp.supernews.com>… > Hi Trin, > The doctor likely has a good reason for wanting to do that. They have to > tell you their thinking. I would tell them to forget it too, unless they > explained it to me in full. > Are you still on bed rest? > BJ-Sk. Canada > "Trinity" <tri…@attbi.com> wrote in message > news:8ef4543a.0210250800.36e3ffe0@posting.google.com… > > Well the doc would like to take my baby three weeks earlier but wont > > tell me why!  i have asked and asked but no answers, they say she is > > small!  well all my kids have been on the small side!  so i worried > > hubby says ask again this next week and wait there until you get an > > answer!  so that is what i am going to do !  i dont like to be kept in > > the dark abotu thing like this!  well i should get going kids are on > > fall break and driving me crazy!!!    SMILE ALL   Love Trin

Well yes i am on bed rest, they would like me to get more but how much more can i get i try and sleep most of the days and then kids come home and then hubby dont get much rest when everyone is home!  my mother in law does not come around anymore,  so it is just me cooking and cleaning the best i can  one day i have lots of energy the next forget it! but that is also the lupus!  but it is saturday i think i will go and eat breakfast and  then take daughter to ballet and her first sleep over!  she is so happy!!!    Trin

Response:

In article <3DBA8526.85518…@execulink.com>, J <J…@NoSPAM.invalid> wrote [ >The antibodies that produce problems in the mother may cross the placenta >and produce a very slow heart rate, anemia, a low platelet count, or a low >white blood cell count in the fetus. However, these antibodies gradually >disappear over several weeks once the baby is born, and the problems they >cause resolve. <snip>

That's called Neonatal Lupus, I believe, but this does NOT mean the baby has "lupus" like you have. -- Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

Andy <a…@kitzbuhel.demon.co.uk> wrote in message <news:CAvAlvAsfvu9Ewta@kitzbuhel.demon.co.uk>… > In article <3DBA8526.85518…@execulink.com>, J <J…@NoSPAM.invalid> wrote > [ > >The antibodies that produce problems in the mother may cross the placenta > >and produce a very slow heart rate, anemia, a low platelet count, or a low > >white blood cell count in the fetus. However, these antibodies gradually > >disappear over several weeks once the baby is born, and the problems they > >cause resolve. <snip> > That's called Neonatal Lupus, I believe, but this does NOT mean the baby > has "lupus" like you have.

Thank you for the artical it was very help full!  there were things in there i did not know !  Trin

Response:

In article <8ef4543a.0210270633.51518...@posting.google.com>, Trinity <tri...@attbi.com> wrote [ >Thank you for the artical it was very help full!  there were things in >there i did not know !  Trin

Ah weel, ye ken the noo... -- Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>

Response:

Hi Trinity, I was at my OB doctor today for my annual;  and I was discussing having a baby while having lupus, and he stated a few things that made me think of you.  He said it is common for them to take the baby early due to several reasons.  He said often the baby will just stop growing, the placenta can separate, or they want to prevent a stillbirth.  He made it sound as though it is what is best for the  baby, and so I wonder what your doctor’s reasoning is;  I’m sure it must be good, but I don’t understand why he won’t tell you.  I’m not pregnant and my doctor was just trying to explain what to expect.  Are you taking heparin shots?(to thin your blood)  Good luck and I hope your doing better. Rebecca "Trinity" <tri…@attbi.com> wrote in message

news:8ef4543a.0210250800.36e3ffe0@posting.google.com… – Hide quoted text — Show quoted text -> Well the doc would like to take my baby three weeks earlier but wont > tell me why!  i have asked and asked but no answers, they say she is > small!  well all my kids have been on the small side!  so i worried > hubby says ask again this next week and wait there until you get an > answer!  so that is what i am going to do !  i dont like to be kept in > the dark abotu thing like this!  well i should get going kids are on > fall break and driving me crazy!!!    SMILE ALL   Love Trin

Response:

- Hide quoted text — Show quoted text -"John Kakouris" <tree…@earthlink.net> wrote in message <news:gBIv9.2432$Ik6.250778@newsread1.prod.itd.earthlink.net>… > Hi Trinity, > I was at my OB doctor today for my annual;  and I was discussing having a > baby while having lupus, and he stated a few things that made me think of > you.  He said it is common for them to take the baby early due to several > reasons.  He said often the baby will just stop growing, the placenta can > separate, or they want to prevent a stillbirth.  He made it sound as though > it is what is best for the  baby, and so I wonder what your doctor’s > reasoning is;  I’m sure it must be good, but I don’t understand why he won’t > tell you.  I’m not pregnant and my doctor was just trying to explain what to > expect.  Are you taking heparin shots?(to thin your blood)  Good luck and I > hope your doing better. > Rebecca > "Trinity" <tri…@attbi.com> wrote in message > news:8ef4543a.0210250800.36e3ffe0@posting.google.com… > > Well the doc would like to take my baby three weeks earlier but wont > > tell me why!  i have asked and asked but no answers, they say she is > > small!  well all my kids have been on the small side!  so i worried > > hubby says ask again this next week and wait there until you get an > > answer!  so that is what i am going to do !  i dont like to be kept in > > the dark abotu thing like this!  well i should get going kids are on > > fall break and driving me crazy!!!    SMILE ALL   Love Trin

Yep on heprin shots twice a day, and it looks like my little girl has slowed down on growing so they are thinking that if she does not grow in the next two weeks they will be taking her!   that is what i got out of them on tuesday!  hope you all have a save and happy haloween!  Love Trin

Response:

Hi Trin, The doctor likely has a good reason for wanting to do that. They have to tell you their thinking. I would tell them to forget it too, unless they explained it to me in full. Are you still on bed rest? BJ-Sk. Canada "Trinity" <tri…@attbi.com> wrote in message

news:8ef4543a.0210250800.36e3ffe0@posting.google.com… – Hide quoted text — Show quoted text -> Well the doc would like to take my baby three weeks earlier but wont > tell me why!  i have asked and asked but no answers, they say she is > small!  well all my kids have been on the small side!  so i worried > hubby says ask again this next week and wait there until you get an > answer!  so that is what i am going to do !  i dont like to be kept in > the dark abotu thing like this!  well i should get going kids are on > fall break and driving me crazy!!!    SMILE ALL   Love Trin

Response:

- Hide quoted text — Show quoted text -Sharon Perloff <noway…@hotmail.com> wrote in message <news:apbqnf$7bdr$1@ID-163463.news.dfncis.de>… > Trinity wrote: > > Well the doc would like to take my baby three weeks earlier but wont > > tell me why!  i have asked and asked but no answers, they say she is > > small!  well all my kids have been on the small side!  so i worried > > hubby says ask again this next week and wait there until you get an > > answer!  so that is what i am going to do !  i dont like to be kept in > > the dark abotu thing like this!  well i should get going kids are on > > fall break and driving me crazy!!!    SMILE ALL   Love Trin > ((((Trin and baby))))) > I would demand an answer today!  But that’s just me and my hot head. > You are your body’s keeper, and you and only you get to make choices for > your own body’s health.  Listening to doctors’ opinions is the best way > to make those decisions, but if you don’t know what’s going on, then > find out.  Don’t let them bully you into doing what they think is > correct, because they’re only human too, and all humans make mistakes > and can maybe do something you didn’t want done to your body.  Make sure > before anything is done, you know what the heck is going on! > Is your husband usually there with you when you see your doctor?  I > would make doubly sure he’s there with me next time to make sure that > doc doesn’t bulldoze over your concerns.  Ultimately, it’s your > decision.  If that doc won’t tell you what’s going on, then get a second > opinion.  JMHO > I hope all is going well with you and your family.  Keep us posted!  And > enjoy your crazy kids.  :)  Wouldn’t it be wonderful to have that much > energy again? > -Sharon

Well i am seeing the head doc on tuesday so i will find out what is going on!  between my mom and hubby  i always have someone there with me!  do to past experances!   so i will keep you all informed on what is going on  i just a little worried!  that is all i have been there many times and they are very good doc’s  just the one i dont like ! and my doc down here wont see me anymore because i am so high risk! go figure!  anyhow thank you and i will keep you all posted on what is what !  got to go daughter has ballet in the morning!  Nite all and stay healthy!!

Response:

Hello Trin, According to Shelagh’s web page, all pregnancies for Lupus patients are high-risk http://www3.telus.net/valleylupus/pregnancy.html The way to look at is, they’re not "taking your baby" but giving you and your baby a better chance and giving you your baby earlier. (as long as they have very good reasons to do so and it seems that just having Lupus is reason enough, but they may have more, see below). My brother’s daughter had her baby 10 weeks early (in October).  We’re all very concerned. He’s so tiny and had to be sent to a different hospital for specialized care along with "Mom". Now he’s back in the town where they live but still in hospital, in an incubator, I think. At the moment, all I know is that he has jaundice (perhaps other stuff too, didn’t have good phone connection) and Dave is very worried. http://www.merck.com/pubs/mmanual_home/sec22/244.htm Medical Conditions  Certain medical conditions in a pregnant woman may endanger her and the fetus. The most important are chronic high blood pressure, kidney disease, diabetes, severe heart disease, sickle cell  disease, thyroid disease, systemic lupus erythematosus (lupus), and blood clotting disorders. (see page 1160 in Chapter 246, Diseases That Can Complicate Pregnancy) http://www.merck.com/pubs/mmanual_home/sec22/246.htm Systemic lupus erythematosus (lupus), (see page 231 in Chapter 51, Disorders of Joints and Connective Tissue) an autoimmune disease that’s nine times more common in women than in men, may appear for the first time, worsen, or improve during pregnancy. How a pregnancy will affect the course of lupus can’t be predicted, but the most likely time for flare-ups is immediately after delivery. Women who develop lupus often have a history of repeated miscarriages, midpregnancy stillbirths, fetuses whose growth is slow (intrauterine growth retardation), and premature delivery. A fetus or a newborn may be endangered by complications of the mother’s lupus, such as kidney damage, high blood pressure, or heart defects. The antibodies that produce problems in the mother may cross the placenta and produce a very slow heart rate, anemia, a low platelet count, or a low white blood cell count in the fetus. However, these antibodies gradually disappear over several weeks once the baby is born, and the problems they cause resolve. <snip> So now you know the risks and can ask relevant questions. I can only assume they’re making the best decision for you and/or your baby. I sure wish you had some assist with the day-to-day activities.  If ever there was a time to put your feet up and let someone else take your daughter to ballet, it’s now !! (and you’ll really have a lot on your hands after the child-birth). Please try to find family/friends/community resources to help you through now and the next months. Just because things went smoothly other times, there’s no guarantee the same will happen this time. We sure hope so, but you gotta stop and TAKE CARE ! (sorry for the shouting, but the message hasn’t been getting through). Hugs J – Hide quoted text — Show quoted text -Trinity wrote: > Well the doc would like to take my baby three weeks earlier but wont > tell me why!  i have asked and asked but no answers, they say she is > small!  well all my kids have been on the small side!  so i worried > hubby says ask again this next week and wait there until you get an > answer!  so that is what i am going to do !  i dont like to be kept in > the dark abotu thing like this!  well i should get going kids are on > fall break and driving me crazy!!!    SMILE ALL   Love Trin

Response:

Well the doc would like to take my baby three weeks earlier but wont tell me why!  i have asked and asked but no answers, they say she is small!  well all my kids have been on the small side!  so i worried hubby says ask again this next week and wait there until you get an answer!  so that is what i am going to do !  i dont like to be kept in the dark abotu thing like this!  well i should get going kids are on fall break and driving me crazy!!!    SMILE ALL   Love Trin

Response:

Trinity wrote: > Well the doc would like to take my baby three weeks earlier but wont > tell me why!  i have asked and asked but no answers, they say she is > small!  well all my kids have been on the small side!  so i worried > hubby says ask again this next week and wait there until you get an > answer!  so that is what i am going to do !  i dont like to be kept in > the dark abotu thing like this!  well i should get going kids are on > fall break and driving me crazy!!!    SMILE ALL   Love Trin

((((Trin and baby))))) I would demand an answer today!  But that’s just me and my hot head. You are your body’s keeper, and you and only you get to make choices for your own body’s health.  Listening to doctors’ opinions is the best way to make those decisions, but if you don’t know what’s going on, then find out.  Don’t let them bully you into doing what they think is correct, because they’re only human too, and all humans make mistakes and can maybe do something you didn’t want done to your body.  Make sure before anything is done, you know what the heck is going on! Is your husband usually there with you when you see your doctor?  I would make doubly sure he’s there with me next time to make sure that doc doesn’t bulldoze over your concerns.  Ultimately, it’s your decision.  If that doc won’t tell you what’s going on, then get a second opinion.  JMHO I hope all is going well with you and your family.  Keep us posted!  And enjoy your crazy kids.  :)  Wouldn’t it be wonderful to have that much energy again? -Sharon — Clear your mind, relax and float downstream.

Response:

Question:

"Manfred" <Manfred.Bau…@gmx.net> writes: > > F. Joseph Brown schrieb in Nachricht > >According to the DOQI <http://www.kidney.org/doqi/doqi/> > >there is no evidence that higher-to-normal Hct causes clotting > >in fistulas.  There is some question of the possibility of > >this happening with grafts, however. > >DOQI also list about ten studies showing marked improvement > >in stamina, mental function, etc. with normal Hct’s. > Do you talk about a transplanted organ when you say graft? I never > heard about high Hct clotting grafts.

No, this refers to Goretex or other artificial blood access. > http://www.kidneydoctor.com/epogen.htm > You won’t like some of the information this document provides.

Nothing objectionable there. > EPO can change your life dramatically.

As long as it is administered properly, optimally and stably. fjb

Response:

F. Joseph Brown schrieb in Nachricht <7t0kdk$7q…@ssauraac-i-1.production.compuserve.com>… – Hide quoted text — Show quoted text ->"Manfred" <Manfred.Bau…@gmx.net> writes: > >> >But seeing the effect of anemia’s end is more subjective. As you >> >exercise, you’ll notice increased stamina, but if you don’t move >> >around, you might not notice much. >> >– >> >Sam Saal      s…@haven.ios.com >As a working principle, the more exercise, the better, however: >The "end" of my anemia was far from subjective.  After receiving >EPO for about ten years, my Hct finally reached normal, 42%.  Up >to that point, I had only experienced "subjective," incremental >improvement in energy, but at 42%, it was like a quantum leap. >I immediately had more than enough energy, so much that I barely >knew what to do with my self for a while.  I no longer was getting >those intermittent bouts of fatigue I had been used to for so long; >I was able to climb hills without stopping for breath, etc. >At that point, my EPO was stopped, dropping my Hct to 32%, putting >me in the doghouse again, but that’s another story. >At present, I’m holding steady around 40%, per Dr.’s order. >***If anyone is having their EPO stopped and Hct dropped in this >way, please email me immediately at Frat…@compuserve.com *** >> The target level for >> Hematocrit is in the range of 36% up to 47% ( according to my >> documents). But your blood becomes thicker the higher this level rises >> which in turn could cause problems to your fistula, could block it. >> For that reason a level of around 36% is better than 47%. >According to the DOQI <http://www.kidney.org/doqi/doqi/> >there is no evidence that higher-to-normal Hct causes clotting >in fistulas.  There is some question of the possibility of >this happening with grafts, however. >DOQI also list about ten studies showing marked improvement >in stamina, mental function, etc. with normal Hct’s.

Do you talk about a transplanted organ when you say graft? I never heard about high Hct clotting grafts. >> EPO can cause influenza-like symptoms if injected intravenous but >> that does not seem to occur with subcutaneous EPO administration . >Never heard of that one, but if Hct rises too quickly, it may cause >high blood pressure.

My mother had that problem. The days she received EPO were lost. She couldn’t do much those days, had headaches, fever and was very week. With a change to subcutaneous EPO administration those symptoms were gone. It was a much better situation over all. No, you don’t hear a lot about this. The page I found this information can be found at http://www.kidneydoctor.com/epogen.htm You won’t like some of the information this document provides. It speaks of a target range between 30 and 36 percent. But I think it has some interesting information regarding the benefits of EPO. >IMHO, everyone being different, everyone has an optimal Hct, or >range of Hct.  Keeping everyone at 36% is a bureaucratic abomination. >The cost of EPO is often cited, but since dosage requirement >increases the lower the Hct is, and dosage is minimal to maintain >normal Hct, the argument is backward.  Costwise, it would make >the most sense to keep everyone in normal range, on minimal dose. >THERE IS NO LEGITIIMATE REASON TO KEEP DIALYSIS PATIENTS ANEMIC! >fjb

EPO can change your life dramatically. manfred

Response:

HCFA set the limit at 36 % in the beginning of the Epo shots for the reason that during the clinical trials, there was a definite increase in the number of clotted accesses seen when the HCT was allowed to go higher.  It was felt that it would lead to unnecessary surgery, and probably use up precious access sites for patients prematurely.  There is now considerable doubt in the medical community on this belief now, with the thoughts leading to it just being people with poor accesses to start with had the problem during the trials.  But it will take years for new studies to indicate a change is necessary(notice I said indicate, not prove. You can prove a htypothesis to be not true, but you can never prove it to be true, or it wouldn’t be a theory, but rather a law of nature) and probably even longer for HCFA to change their rules. Still, 36 % is a whole lot better than <20%, which is what i ran for Hct before EPO. Dave. – Hide quoted text — Show quoted text -F. Joseph Brown wrote: > peter1992t…@pop.mpls.uswest.net writes: > > F. Joseph points out: > >    "THERE IS NO LEGITIMATE REASON > >     TO KEEP DIALYSIS PATIENTS ANEMIC!" > > While not claiming that financial reasons are legitimate, it > > is the case that raising the EPO reimbursement cut-off > > (currently at 36.5% hematocrit) will also raise the cost > > (for clinics) of providing hemodialysis: > >    1. Higher hematocrits (hct.) tend to clot dialyzer > >        fibers more easily and this reduces reuse rates. > Too bloody bad!  There are a number of technical, scientific > arguments against reuse, or at least, high reuse. > >    2. Patients with higher hcts. do not dialyze as > >        efficiently and must dialyze longer to achieve > >        the same URR or KT/V. > I would gladly give up some percentage of dialysis time > for the tradeoff of having a normal hematocrit, and all > the benefits that entails.  Besides, with high reuse, down > to 80% volume, patients should be dialysing longer proportionally, > but how many clinics actually do this?  I.e., it’s a moot point > > These costs are included in the the total package of ESRD > > services ("bundle") that HCFA reimburses for each > > hemodialysis, so clinics must suck them up. > I don’t understand how URR and KT/V are bundled in reimbursement. > > Accordingly, any increase in EPO usage (as would occur if > > the hct. cut-off was raised) means higher costs to HCFA. > Read my original paragraph: > "The cost of EPO is often cited, but since dosage requirement > increases the lower the Hct is, and dosage is minimal to maintain > normal Hct, the argument is backward.  Costwise, it would make > the most sense to keep everyone in normal range, on minimal dose." > > So a higher hct. cut-off means higher costs for the clinics > > and higher costs for HCFA. > This may be true for an anemic cutoff point, but: > Where is the proof that maintaining normal Hcts would cost more, > or a lot more?  My experience is that Hct stabilizes once it > reaches normal (42%), and lower and/or fewer doses were needed. > Dr. Lundin observed this, also.  He posited that his liver may have > started making EPO, perhaps as a result of improved overall > homeostasis.  He suggested experimental trials of normal Hct’s, > but so far HCFA has not approved this, to my knowledge. > When my Hct was cut at 36%, it fell, far and fast, necessitating > higher doses, and causing me numerous serious symptoms. > Sounds like a definite lose/lose, from what you have said, > but, consider that clinics profit more from higher doses of EPO. > > Any guess why the cut-off rate > > is below normal? > Apparently: greed, ignorance, and profit at all costs. > > It is one thing to say that EPO has made most dialysis > > patients less anemic, but quite another to acknowledge that > > there is an institutionalized agreement to keep them that > > way (anemic). > Ain’t it the truth. > My suggesion:  let the big, vertically integrated corporations > take over the whole market, then audit them yearly, keeping > them to a profit margin of 3% or so, instead of the 15-20-30% > or whatever egregious amount they’re racking in now.  Return the > focus to optimal, individualized care and rehabilitation, and we > will equal or surpass the Europeans and Japanese. > Barring this, we remain at the "mercy" of facelesas profiteers, > who have no legitimae place in healhcare. > fjb

Response:

peter1992t…@pop.mpls.uswest.net writes: > F. Joseph points out: >    "THERE IS NO LEGITIMATE REASON >     TO KEEP DIALYSIS PATIENTS ANEMIC!" > While not claiming that financial reasons are legitimate, it > is the case that raising the EPO reimbursement cut-off > (currently at 36.5% hematocrit) will also raise the cost > (for clinics) of providing hemodialysis: >    1. Higher hematocrits (hct.) tend to clot dialyzer >        fibers more easily and this reduces reuse rates.

Too bloody bad!  There are a number of technical, scientific arguments against reuse, or at least, high reuse.   >    2. Patients with higher hcts. do not dialyze as >        efficiently and must dialyze longer to achieve >        the same URR or KT/V.

I would gladly give up some percentage of dialysis time for the tradeoff of having a normal hematocrit, and all the benefits that entails.  Besides, with high reuse, down to 80% volume, patients should be dialysing longer proportionally, but how many clinics actually do this?  I.e., it’s a moot point > These costs are included in the the total package of ESRD > services ("bundle") that HCFA reimburses for each > hemodialysis, so clinics must suck them up.

I don’t understand how URR and KT/V are bundled in reimbursement. > Accordingly, any increase in EPO usage (as would occur if > the hct. cut-off was raised) means higher costs to HCFA.

Read my original paragraph: "The cost of EPO is often cited, but since dosage requirement increases the lower the Hct is, and dosage is minimal to maintain normal Hct, the argument is backward.  Costwise, it would make the most sense to keep everyone in normal range, on minimal dose." > So a higher hct. cut-off means higher costs for the clinics > and higher costs for HCFA.  

This may be true for an anemic cutoff point, but: Where is the proof that maintaining normal Hcts would cost more, or a lot more?  My experience is that Hct stabilizes once it reaches normal (42%), and lower and/or fewer doses were needed. Dr. Lundin observed this, also.  He posited that his liver may have started making EPO, perhaps as a result of improved overall homeostasis.  He suggested experimental trials of normal Hct’s, but so far HCFA has not approved this, to my knowledge. When my Hct was cut at 36%, it fell, far and fast, necessitating higher doses, and causing me numerous serious symptoms. Sounds like a definite lose/lose, from what you have said, but, consider that clinics profit more from higher doses of EPO. > Any guess why the cut-off rate > is below normal?

Apparently: greed, ignorance, and profit at all costs. > It is one thing to say that EPO has made most dialysis > patients less anemic, but quite another to acknowledge that > there is an institutionalized agreement to keep them that > way (anemic).

Ain’t it the truth. My suggesion:  let the big, vertically integrated corporations take over the whole market, then audit them yearly, keeping them to a profit margin of 3% or so, instead of the 15-20-30% or whatever egregious amount they’re racking in now.  Return the focus to optimal, individualized care and rehabilitation, and we will equal or surpass the Europeans and Japanese. Barring this, we remain at the "mercy" of facelesas profiteers, who have no legitimae place in healhcare. fjb

Response:

F. Joseph points out:    "THERE IS NO LEGITIMATE REASON     TO KEEP DIALYSIS PATIENTS ANEMIC!" While not claiming that financial reasons are legitimate, it is the case that raising the EPO reimbursement cut-off (currently at 36.5% hematocrit) will also raise the cost (for clinics) of providing hemodialysis:    1. Higher hematocrits (hct.) tend to clot dialyzer        fibers more easily and this reduces reuse rates.    2. Patients with higher hcts. do not dialyze as        efficiently and must dialyze longer to achieve        the same URR or KT/V. These costs are included in the the total package of ESRD services ("bundle") that HCFA reimburses for each hemodialysis, so clinics must suck them up. Because those costs are bundled, they don’t represent any increase cost to HCFA.  But reimbursement for EPO is not bundled, meaning HCFA reimburses separately for it (EPO). Accordingly, any increase in EPO usage (as would occur if the hct. cut-off was raised) means higher costs to HCFA. So a higher hct. cut-off means higher costs for the clinics and higher costs for HCFA.  Any guess why the cut-off rate is below normal? It is one thing to say that EPO has made most dialysis patients less anemic, but quite another to acknowledge that there is an institutionalized agreement to keep them that way (anemic).                Peter T.

Response:

"Manfred" <Manfred.Bau…@gmx.net> writes: > > >But seeing the effect of anemia’s end is more subjective. As you > >exercise, you’ll notice increased stamina, but if you don’t move > >around, you might not notice much. > >– > >Sam Saal      s…@haven.ios.com

As a working principle, the more exercise, the better, however: The "end" of my anemia was far from subjective.  After receiving EPO for about ten years, my Hct finally reached normal, 42%.  Up to that point, I had only experienced "subjective," incremental improvement in energy, but at 42%, it was like a quantum leap.   I immediately had more than enough energy, so much that I barely knew what to do with my self for a while.  I no longer was getting those intermittent bouts of fatigue I had been used to for so long; I was able to climb hills without stopping for breath, etc. At that point, my EPO was stopped, dropping my Hct to 32%, putting me in the doghouse again, but that’s another story.   At present, I’m holding steady around 40%, per Dr.’s order. ***If anyone is having their EPO stopped and Hct dropped in this way, please email me immediately at Frat…@compuserve.com *** > The target level for > Hematocrit is in the range of 36% up to 47% ( according to my > documents). But your blood becomes thicker the higher this level rises > which in turn could cause problems to your fistula, could block it. > For that reason a level of around 36% is better than 47%.

According to the DOQI <http://www.kidney.org/doqi/doqi/> there is no evidence that higher-to-normal Hct causes clotting in fistulas.  There is some question of the possibility of this happening with grafts, however. DOQI also list about ten studies showing marked improvement in stamina, mental function, etc. with normal Hct’s. > EPO can cause influenza-like symptoms if injected intravenous but > that does not seem to occur with subcutaneous EPO administration .

Never heard of that one, but if Hct rises too quickly, it may cause high blood pressure. IMHO, everyone being different, everyone has an optimal Hct, or range of Hct.  Keeping everyone at 36% is a bureaucratic abomination. The cost of EPO is often cited, but since dosage requirement increases the lower the Hct is, and dosage is minimal to maintain normal Hct, the argument is backward.  Costwise, it would make the most sense to keep everyone in normal range, on minimal dose. THERE IS NO LEGITIIMATE REASON TO KEEP DIALYSIS PATIENTS ANEMIC! fjb

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Question:

From: seasons change <Come2je…@webtv.net> Subject: Re: Anemia and Kidney Disease Date: Wednesday, 22 September 1999 12:26 How long does it take on average before one begins to realize the benefits of EPO? For me it was just a few months.  I spent November and December last year lying on the couch.  No energy.  Anaemic.  Started Epo.  It took a couple of months to get the level right.  I inject myself 2 times a week with  3000 units each time.  Pretty scary at first, but as soon as I realised that it didn’t hurt, I was o.k. with it.  I started at 4000 units 2 times a week but that was too much.  Now I seem to have better circulation,  I don’t spend all day on the couch, and I can certainly do a lot more physical stuff than I could before, but I still have to pace myself.  Last time my kidneys were failing, in the 1980’s, there was no Epo, and my energy levels now compared to then are much better.  Hope this helps. Judanne

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>How long does it take on average before one begins to realize the >benefits of EPO?

Jude, Don has been on it for about a year, same dosage, and his levels have only increased slightly.  He has Thallasamia, which I think complicates matters. He did have a blood transfusion of packed cells, a few months ago, and since then we saw some improvement.  jgirl

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Question:

I don’t know much advice to help you, but I care about what is happening to you, and you are in my prayers. liz ************************************************        I believe we are here for a reason.        I believe that as each day unfolds,          we see less of the shadow                                   and more of the sun.        Less of the tarnish and more of the                       gold.                              Hawkinson                                

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Hi, There are several reasons for anemia in lupus, however, if there is anemia and MCV is not high, it means that bone marrow does not try to compensate by producing more red blood cells. This can be due to several reasons: 1. Lack of iron, either in food, or because of poor absorbtion. If iron does not get to bone marrow, it will be observed in the biopsy. 2. Defficiency in Folic acid or Vit. B12, these two can be assayed in blood. 3. Effect of medications on bone marrows (like imuran or cytoxan), this is also observed in biopsy. 4. Kidney disease that reduces blood level of hormone called Erytropoietin. 5. What is called the anemia of chronic diseases, etiology is not clear, but again, bone marrow is exausted and is not produces enough red blood cells. The two last types of anemia respond very well to treatments with recombinant Erythropoietin. Hugs, Boaz http://www.acor.org/lupus/ http://www.zeta.org.au/~sioux/mira always consult your medical practitioner

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My wife was diagnosed with lupus in 1995 it was not active then but the antibodies were there. She became active in 1998 she crashed and it was then I made her go to a doctor. He was very familiar and she was doing well, My Question is  today she went to see her Doc for a checkup, they drew her blood and said that her body is not making blood, he then sent her to see a hemotologist, she is having a blood trans- fusion tomorrow, she only has half the amount of blood that any of us needs. Her body is not making red blood cells. they took marrow from her hip and it won’t be until next week when we get the diagnosis. We are both very scared, If anyone has info, please help us? Robert….ponc…@webtv.net

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Hi Robert and Crystal, I know this will be a long weekend for you, but hang in there !!! The bone marrow test will detect the cause of the anemia. As you probably already know Lupus can cause anemia. The doctors decided to perform the biopsy based on the results of the Complete blood count . Try to stay calm and let me (us) know what they find. Good luck. Donna Robert & Crystal Ponce wrote in message <11084-373388AB…@newsd-273.iap.bryant.webtv.net>… My wife was diagnosed with lupus in 1995 it was not active then but the antibodies were there. She became active in 1998 she crashed and it was then I made her go to a doctor. He was very familiar and she was doing well, My Question is  today she went to see her Doc for a checkup, they drew her blood and said that her body is not making blood, he then sent her to see a hemotologist, she is having a blood trans- fusion tomorrow, she only has half the amount of blood that any of us needs. Her body is not making red blood cells. they took marrow from her hip and it won’t be until next week when we get the diagnosis. We are both very scared, If anyone has info, please help us? Robert….ponc…@webtv.net

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Question:

- Hide quoted text — Show quoted text – My vet has been treating our cat, Smokey, for hemobartonella for about 9 months.  She has had all vaccinations since she was a kitten, but got sick when she was just over one year old.  We have done three tests for hemobartonella (which came back positive only once), and all other tests like feline leukemia and FIPS have come back negative, which have also been done three times over the last few months.  We have treated her in the past with liquid tetracycline orally, injectable oxytetracycline (she developed abscesses), and she is now taking a half tablet of doxycycline (100 mg) daily, along with a 5 mg prednisone tablet every other day.  Whenever we do a CBC, her hematocrit is about 9-11.  She is lethargic, her appetite and weight comes and goes, and she has been throwing up several times this week. The vet has sent in the same set of tests ( I will get the results Monday A.M.), and is now saying he thinks she may have leukemia, which is why the hemobartonella and anemia never get better. Is there any hope for Smokey? She hasn’t been well since January, just varying degrees of sick…on deaths door twice.  We have spent several hundred dollars, and I still don’t think we really know what is wrong with her.  I have read posts on the internet that vitamin C helps with leukemia.  Is there any truth to this and if so, is this the same vitamin C tablets you can get anywhere (for people) and what dosage and for how long?

    Has your vet pursued other causes of the anemia?  Auto-immune hemolytic anemia, bone marrow suppression, neoplasia, chronic diseaase, kidney disease, etc? At this point I think ruling out other differentials may be a good idea.  It’s possible the H. felis test was a false positive.  While it’s possible that leukemia could be suppressing the immune system enough to be defending the H. felis, the tetracyclines are _extraordinarily_ effective at treating such infections.  If the immune system were that compromised, I suspect you’d see a multitude of other infections. Erik "Rouleaux" Hofmeister WSU Class ‘00 PLEASE NOTE: In the absence of a traditional veterinarian-client-patient relationship, this information should be taken as a friendly opinion, not as an official clinical recommendation.  Also realize that I am a veterinary student, and anything stated should be taken with that in mind.

Response:

My vet has been treating our cat, Smokey, for hemobartonella for about 9 months.  She has had all vaccinations since she was a kitten, but got sick when she was just over one year old.  We have done three tests for hemobartonella (which came back positive only once), and all other tests like feline leukemia and FIPS have come back negative, which have also been done three times over the last few months.  We have treated her in the past with liquid tetracycline orally, injectable oxytetracycline (she developed abscesses), and she is now taking a half tablet of doxycycline (100 mg) daily, along with a 5 mg prednisone tablet every other day.  Whenever we do a CBC, her hematocrit is about 9-11.  She is lethargic, her appetite and weight comes and goes, and she has been throwing up several times this week. The vet has sent in the same set of tests ( I will get the results Monday A.M.), and is now saying he thinks she may have leukemia, which is why the hemobartonella and anemia never get better. Is there any hope for Smokey? She hasn’t been well since January, just varying degrees of sick…on deaths door twice.  We have spent several hundred dollars, and I still don’t think we really know what is wrong with her.  I have read posts on the internet that vitamin C helps with leukemia.  Is there any truth to this and if so, is this the same vitamin C tablets you can get anywhere (for people) and what dosage and for how long? There are two vets in the clinic that we go to and she has seen them both numerous times over the months.  If she had leukemia, wouldn’t she be subject to other types of infections?  We just can’t get her over the anemia.  She also takes a liquid vitamin, loxotinic, which she hates.  Any help would be greatly appreciated.  Should we ask for copies of all her records and get a third opinion?  I know medicine is an art, not really a science, and not all things can be diagnosed. What would be the next step in confirming a diagnosis, if the tests come back negative again…a bone marrow biopsy?   When she had a CBC a few months ago, the lab reported 9 NRBCs (nucleated red blood cells) indicating that the RBCs are regenerating.  We are doing another CBC to see if she is still producing RBCs.  If not leukemia, has her marrow just given up trying to keep up with the destruction of RBCs due to the hemobartonella?  And if not leukemia, why can’t we knock down the hemobartonella?

Response:

- Hide quoted text — Show quoted text – My vet has been treating our cat, Smokey, for hemobartonella for about 9 months.  She has had all vaccinations since she was a kitten, but got sick when she was just over one year old.  We have done three tests for hemobartonella (which came back positive only once), and all other tests like feline leukemia and FIPS have come back negative, which have also been done three times over the last few months.  We have treated her in the past with liquid tetracycline orally, injectable oxytetracycline (she developed abscesses), and she is now taking a half tablet of doxycycline (100 mg) daily, along with a 5 mg prednisone tablet every other day.  Whenever we do a CBC, her hematocrit is about 9-11.  She is lethargic, her appetite and weight comes and goes, and she has been throwing up several times this week. The vet has sent in the same set of tests ( I will get the results Monday A.M.), and is now saying he thinks she may have leukemia, which is why the hemobartonella and anemia never get better. Is there any hope for Smokey? She hasn’t been well since January, just varying degrees of sick…on deaths door twice.  We have spent several hundred dollars, and I still don’t think we really know what is wrong with her.  I have read posts on the internet that vitamin C helps with leukemia.  Is there any truth to this and if so, is this the same vitamin C tablets you can get anywhere (for people) and what dosage and for how long?

    Has your vet pursued other causes of the anemia?  Auto-immune hemolytic anemia, bone marrow suppression, neoplasia, chronic diseaase, kidney disease, etc? At this point I think ruling out other differentials may be a good idea.  It’s possible the H. felis test was a false positive.  While it’s possible that leukemia could be suppressing the immune system enough to be defending the H. felis, the tetracyclines are _extraordinarily_ effective at treating such infections.  If the immune system were that compromised, I suspect you’d see a multitude of other infections. Erik "Rouleaux" Hofmeister WSU Class ‘00 PLEASE NOTE: In the absence of a traditional veterinarian-client-patient relationship, this information should be taken as a friendly opinion, not as an official clinical recommendation.  Also realize that I am a veterinary student, and anything stated should be taken with that in mind.

Response:

My vet has been treating our cat, Smokey, for hemobartonella for about 9 months.  She has had all vaccinations since she was a kitten, but got sick when she was just over one year old.  We have done three tests for hemobartonella (which came back positive only once), and all other tests like feline leukemia and FIPS have come back negative, which have also been done three times over the last few months.  We have treated her in the past with liquid tetracycline orally, injectable oxytetracycline (she developed abscesses), and she is now taking a half tablet of doxycycline (100 mg) daily, along with a 5 mg prednisone tablet every other day.  Whenever we do a CBC, her hematocrit is about 9-11.  She is lethargic, her appetite and weight comes and goes, and she has been throwing up several times this week. The vet has sent in the same set of tests ( I will get the results Monday A.M.), and is now saying he thinks she may have leukemia, which is why the hemobartonella and anemia never get better. Is there any hope for Smokey? She hasn’t been well since January, just varying degrees of sick…on deaths door twice.  We have spent several hundred dollars, and I still don’t think we really know what is wrong with her.  I have read posts on the internet that vitamin C helps with leukemia.  Is there any truth to this and if so, is this the same vitamin C tablets you can get anywhere (for people) and what dosage and for how long? There are two vets in the clinic that we go to and she has seen them both numerous times over the months.  If she had leukemia, wouldn’t she be subject to other types of infections?  We just can’t get her over the anemia.  She also takes a liquid vitamin, loxotinic, which she hates.  Any help would be greatly appreciated.  Should we ask for copies of all her records and get a third opinion?  I know medicine is an art, not really a science, and not all things can be diagnosed. What would be the next step in confirming a diagnosis, if the tests come back negative again…a bone marrow biopsy?   When she had a CBC a few months ago, the lab reported 9 NRBCs (nucleated red blood cells) indicating that the RBCs are regenerating.  We are doing another CBC to see if she is still producing RBCs.  If not leukemia, has her marrow just given up trying to keep up with the destruction of RBCs due to the hemobartonella?  And if not leukemia, why can’t we knock down the hemobartonella?

Response:

- Hide quoted text — Show quoted text – My vet has been treating our cat, Smokey, for hemobartonella for about 9 months.  She has had all vaccinations since she was a kitten, but got sick when she was just over one year old.  We have done three tests for hemobartonella (which came back positive only once), and all other tests like feline leukemia and FIPS have come back negative, which have also been done three times over the last few months.  We have treated her in the past with liquid tetracycline orally, injectable oxytetracycline (she developed abscesses), and she is now taking a half tablet of doxycycline (100 mg) daily, along with a 5 mg prednisone tablet every other day.  Whenever we do a CBC, her hematocrit is about 9-11.  She is lethargic, her appetite and weight comes and goes, and she has been throwing up several times this week. The vet has sent in the same set of tests ( I will get the results Monday A.M.), and is now saying he thinks she may have leukemia, which is why the hemobartonella and anemia never get better. Is there any hope for Smokey? She hasn’t been well since January, just varying degrees of sick…on deaths door twice.  We have spent several hundred dollars, and I still don’t think we really know what is wrong with her.  I have read posts on the internet that vitamin C helps with leukemia.  Is there any truth to this and if so, is this the same vitamin C tablets you can get anywhere (for people) and what dosage and for how long?

    Has your vet pursued other causes of the anemia?  Auto-immune hemolytic anemia, bone marrow suppression, neoplasia, chronic diseaase, kidney disease, etc? At this point I think ruling out other differentials may be a good idea.  It’s possible the H. felis test was a false positive.  While it’s possible that leukemia could be suppressing the immune system enough to be defending the H. felis, the tetracyclines are _extraordinarily_ effective at treating such infections.  If the immune system were that compromised, I suspect you’d see a multitude of other infections. Erik "Rouleaux" Hofmeister WSU Class ‘00 PLEASE NOTE: In the absence of a traditional veterinarian-client-patient relationship, this information should be taken as a friendly opinion, not as an official clinical recommendation.  Also realize that I am a veterinary student, and anything stated should be taken with that in mind.

Response:

My vet has been treating our cat, Smokey, for hemobartonella for about 9 months.  She has had all vaccinations since she was a kitten, but got sick when she was just over one year old.  We have done three tests for hemobartonella (which came back positive only once), and all other tests like feline leukemia and FIPS have come back negative, which have also been done three times over the last few months.  We have treated her in the past with liquid tetracycline orally, injectable oxytetracycline (she developed abscesses), and she is now taking a half tablet of doxycycline (100 mg) daily, along with a 5 mg prednisone tablet every other day.  Whenever we do a CBC, her hematocrit is about 9-11.  She is lethargic, her appetite and weight comes and goes, and she has been throwing up several times this week. The vet has sent in the same set of tests ( I will get the results Monday A.M.), and is now saying he thinks she may have leukemia, which is why the hemobartonella and anemia never get better. Is there any hope for Smokey? She hasn’t been well since January, just varying degrees of sick…on deaths door twice.  We have spent several hundred dollars, and I still don’t think we really know what is wrong with her.  I have read posts on the internet that vitamin C helps with leukemia.  Is there any truth to this and if so, is this the same vitamin C tablets you can get anywhere (for people) and what dosage and for how long? There are two vets in the clinic that we go to and she has seen them both numerous times over the months.  If she had leukemia, wouldn’t she be subject to other types of infections?  We just can’t get her over the anemia.  She also takes a liquid vitamin, loxotinic, which she hates.  Any help would be greatly appreciated.  Should we ask for copies of all her records and get a third opinion?  I know medicine is an art, not really a science, and not all things can be diagnosed. What would be the next step in confirming a diagnosis, if the tests come back negative again…a bone marrow biopsy?   When she had a CBC a few months ago, the lab reported 9 NRBCs (nucleated red blood cells) indicating that the RBCs are regenerating.  We are doing another CBC to see if she is still producing RBCs.  If not leukemia, has her marrow just given up trying to keep up with the destruction of RBCs due to the hemobartonella?  And if not leukemia, why can’t we knock down the hemobartonella?

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