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Old 06-12-2003, 07:23 AM
sister clubley
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No Blood!!

Hi, I am new to NoBlood.org.

I would like to share my story of how I survived with non blood products.

In 1997, I became seriously ill with mononucleosis. In addition to this and as a complication I had Hepatitis A. Which of course caused jaundice and then haemolytic anaemia. I never do things by halves!!

Anyway. As my blood cells were just dissolving, I was encouraged to have e-poetin. Before I became too ill to make a decision, I had already decided that if it was not genetically engineered that I would not have it, as it contains some blood and this is against my christian conscience.

The doctors here in England wanted to give me a blood transfusion as my blood count had gone down to 4.8! They gave me a 10% chance of living that night, and I can assure you that mentally and indeed physically, I fought with all my life that night. They gave me steroid treatment and saline drips. The upshot was that I spent 3 weeks in hospital. The doctors could not understand why I had survived. They then discovered that if they had given me a blood transfusion that I would most certainly have died. I did not have the immune system to cope with it.

Today, I still suffer a little from tiredness due to the glandular fever, but other than that, I have a 20 month old son and am very much alive and kicking!!!

Never be scared to stand up for what you want. It's your right as an individual, and as a patient.

If anyone out there needs encouragement, send me a private e-mail!

sister clubley
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Old 06-27-2003, 11:13 AM
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Thank you for sharing your experience. There are many individuals like yourself who have successfully recovered from severe anemic conditions. It reinforces that this approach to healthcare is very valuable. Much can be learned from your case.
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Old 07-07-2003, 01:39 PM
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It is heart warming to hear you are doing well today. Many healthcare providers around the world are recognizing the fact that a hemoglobin of 4. 8 may not be life-threatening in all patients (even if it is untreated with EPO).
However, I think we would be remiss in the healthcare profession if we led people to believe that having a Hgb below 5 is a survivable event for everyone. As more studies are conducted in the field of blood conservation we are learning that many patients, who are below the age of 50 and have no cardiovascular disease or other hematological problem, can do quite well without transfusions. In our institutions, we routinely send our post-partum and GYN patients home with a Hgb of 5 or greater. But, not all patients will fit that profile. Early studies now show, if you are a patient over the age of 50 and have some form of cardiovascular disease or other untreatable blood related problem the risk of dying from complications of untreated severe anemia is much greater. We are grateful for new products such as EPO, IV Iron and other medications that either prevent severe anemia or treat it once it develops. So if you are a patient, please be sure you have ALL the facts about your treatment options before making your personal decision.
Keep in mind that Bloodless Medicine and Surgery is just good medicine, nothing more. No miracles, no resurrections; as that is in the hands of someone greater then modern day medicine.
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Old 07-09-2003, 05:57 AM
sister clubley
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BEING WELL INFORMED

Hi Vernon

Glad to be alive! And thanks to the understanding of the Healthcare professionals that respected my personal decision not to use blood. You are right, bloodless medicine and surgery is good practice, and we know that miracles don't happen! But if I hadn't been so well informed, I couldn't have made my personal choice.

I would urge everyone to take up the point of being well informed for the treatment you decide to have.

Sister Clubley
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Old 12-14-2003, 10:13 PM
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Quote:
Originally Posted by jbwade
One point of clarification - Recombinant EPO is in fact genetically engineered. The products available here in the United States do in fact contain a very small amount of albumin, which is derived from proteins extracted from blood plasma and therefore are a matter of personal decision for the Jehovah's Witness population.

I believe the European EPO does not contain albumin making it a purely genetically engineered product.
In Canada Janssen-Ortho distrubutes erythropoietin under the name 'EPREX'. They actually have 2 products listed. The citrate-buffered vial contains epoetin alpha with an albumin stabalizer (human)(0.25%). The phosphate-buffered vials use glycine and polysorbate 80 as stabalizers.
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Old 12-28-2003, 04:54 AM
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Tolerance to anemia

28 Dec 2003

Dear Sister Clubley,

Your own experience with anemia and survival is something for healthcare providers especially doctors to ponder - that severe anemia is tolerated by many young, otherwise healthy patients.

May I share with you my experience as an anesthesiologist practising bloodless medicine and surgery. I gave anesthesia to a 21-year old male who suffered cardiac tamponade from a stab wound to the heart. Patient is a son of a Jehovah's Witness. In the perioperative period he received asanguinous (non-blood) fluids and his hemoglobin dropped to 4 gm/dL. I gave him injectable iron daily for a week and oral iron also starting on the 3rd day when diet was commenced and of course IV fluids (including colloids) to maintain his blood pressure. He went home on the 7th day and is now working in Manila. A second patient, the wife of an infectious disease specialist, had a ruptured ectopic pregnancy. The husband requested that no blood be given (they are not Jehovah's Witnesses). Postoperative hemoglobin was 4.8 gm/dL. The surgeon did not honor the request and blood was started. Soon the patient developed rashes and an asthmatic attack. The blood was discontinued and intramuscular iron was given for 7 days. She went home on the eight day improved.

In the hospital where I work (in central Philippines) some obstetricians and surgeons are no longer scared of anemia although many of them still fear the legal implications of withholding blood transfusions.

I continue giving lectures to doctors and nurses in many hospitals all over the Philippines on the adverse effects of allogeneic blood and what alternatives are available.

Kind regards,
Angelina A. Gapay, MD
Dept of Anesthesia
Divine Word Hospital
Tacloban City, Leyte
Philippines


Quote:
Originally Posted by sister clubley
Hi, I am new to NoBlood.org.

I would like to share my story of how I survived with non blood products.

In 1997, I became seriously ill with mononucleosis. In addition to this and as a complication I had Hepatitis A. Which of course caused jaundice and then haemolytic anaemia. I never do things by halves!!

Anyway. As my blood cells were just dissolving, I was encouraged to have e-poetin. Before I became too ill to make a decision, I had already decided that if it was not genetically engineered that I would not have it, as it contains some blood and this is against my christian conscience.

The doctors here in England wanted to give me a blood transfusion as my blood count had gone down to 4.8! They gave me a 10% chance of living that night, and I can assure you that mentally and indeed physically, I fought with all my life that night. They gave me steroid treatment and saline drips. The upshot was that I spent 3 weeks in hospital. The doctors could not understand why I had survived. They then discovered that if they had given me a blood transfusion that I would most certainly have died. I did not have the immune system to cope with it.

Today, I still suffer a little from tiredness due to the glandular fever, but other than that, I have a 20 month old son and am very much alive and kicking!!!

Never be scared to stand up for what you want. It's your right as an individual, and as a patient.

If anyone out there needs encouragement, send me a private e-mail!

sister clubley
__________________
Angelina A. Gapay, MD
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Old 12-29-2003, 02:39 PM
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Hi Jan, do you have anymore information on the European product that does not contain albumin? Any idea about whether it costs more or less because of not containing the albumin?



Quote:
Originally Posted by jbwade
Glad to you were able to tell us your story
You wrote - "Anyway. As my blood cells were just dissolving, I was encouraged to have e-poetin. Before I became too ill to make a decision, I had already decided that if it was not genetically engineered that I would not have it, as it contains some blood and this is against my christian conscience."

One point of clarification - Recombinant EPO is in fact genetically engineered. The products available here in the United States do in fact contain a very small amount of albumin, which is derived from proteins extracted from blood plasma and therefore are a matter of personal decision for the Jehovah's Witness population.

I believe the European EPO does not contain albumin making it a purely genetically engineered product.


EPO (Erythropoietin)

Erythropoietin (EPO) is a glycopeptid hormone which controls the formation of red blood cells (erythrocytes) in the stem cells of the bone marrow depending on oxygen requirements. EPO is produced chiefly in the kidney tissue.
EPO is composed of amino acids. At four places in the protein chain there are links with different glycosidic residues. Because of the variety of these sugar residues there are different EPO forms, whose physiological effects are comparable although their physical and chemical characteristics are somewhat different.
The genetically engineered recombinant human erythropoietin (in the presented literature abbreviated as: rHuEPO, r-HuEPO, rhu-EPO, rhEPO or rEPO) is identical with natural EPO as far as the amino acid structure is concerned. However, there are slight differences in the sugar chains. These differences also have an effect on the physical and chemical behaviour of the molecule. For example, there are differences in the electrical charges of the various EPO forms.


SOME EPO HISTORY

1977 Purified EPO is isolated from human urine for the first time

1985 EPO gene is cloned.

1987 Recombinant EPO is first available in Europe.

1987-1990 A number of deaths of competitive Dutch and Belgian cyclists is linked to EPO use.

1988 The Federation Internationale de Ski (Fis) classifies EPO as a doping substance.

1989 Recombinant EPO is approved by the FDA for manufacture.

1990 EPO is banned by the IOC.

1993-1994 The IAAF introduces blood sampling during eight World Cup Meetings.

1997 The Union Cycliste Internationale (UCI) and the Federation Internationale de Ski (Fis) accept random blood testing before competition and fix maximum haematocrit and haemoglobin values. However, these blood values are not controlled to prove the athlete guilty of doping but to protect his or her health against possible damage caused by elevated haematocrit and haemoglobin values.


1998 The discovery of EPO in a Festina team car during the Tour de France leads to a doping scandal, which is covered extensively in the press.

1999 Work to develop a reliable EPO test in time for Sydney 2000 is intensified.


THE EFFECTS OF EPO

EPO stimulates the maturation of reticulocytes to erythrocytes in the stem cells of the bone marrow. The increase in the number of erythrocytes leads to an increase in the amount of storable oxygen per blood volume portion and, in connection with this, to the improvement of oxygen transport capacity and an increase in endurance performance. A similar effect is achieved through altitude training. (See e.g. BREIDBACH, ch. 1; Gambrell/Lombardo, ch. 1; Schnauzer, ch. 1; Rendic, ch. 2.)


In which cases is rhEPO normally used in medicine?

As EPO is produced by the kidneys, people suffering from chronic renal failure are anaemic. While patients with total renal failure were treated with blood transfusions and erythrocyte concentrates until the end of the eighties, they have been treated with rhEPO since the approval of this medicament in 1989. In a lot of cases anaemias of a different genesis can also be improved by rhEPO. The fact that rhEPO therapy induces an additional stimulation of erythropoesis, even in the case of a completely intact endogenous EPO production,

is utilized with autologous blood donors. As an alternative to erythrocyte transfusion, high rhEPO doses are also effective as an antianaemic in the case of chronic polyarthritis, AIDS, tumors and surgery. A still unclear side effect of therapeutic rhEPO administration is increased blood pressure. (See e.g. BREIDBACH, ch. 1; ECKARDT, ch. 1 ; FANDREV/JElKMANN, ch. 1; JElKMANN, ch. 1 ; MANDIN, ch. 2)

How is rhEPO administered?

In haemodialysis patients rhEPO is normally administered intravenously. However, rhEPO can also be injected subcutanously. (See GAMBRELL/LMBARDO, ch. 1.)


What are the risks of rhEPO administration?

RhEPO is a well-tolerated medicament, which has almost no adverse effects. However, if rhEPO is administered in an excessively high dosage and in an uncontrolled way, the result is an increase in blood viscosity and thus a high risk of coronary and cerebral vascular occlusions.
The risks associated with the intake of too much rhEPO even increase when training is done at altitude or in the case of dehydration. (See e.g. BREIDBACH. ch. 1 ; GAMBRELL/LOMBARDO, ch. 1 ; SCHANZER, ch. 1; SHASKEY/GREEN, ch. 1; STRICKER, ch. 1.)
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Old 12-31-2003, 04:43 PM
bigboy2003
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Quote:
Originally Posted by sister clubley
Hi, I am new to NoBlood.org.

I would like to share my story of how I survived with non blood products.

In 1997, I became seriously ill with mononucleosis. In addition to this and as a complication I had Hepatitis A. Which of course caused jaundice and then haemolytic anaemia. I never do things by halves!!

Anyway. As my blood cells were just dissolving, I was encouraged to have e-poetin. Before I became too ill to make a decision, I had already decided that if it was not genetically engineered that I would not have it, as it contains some blood and this is against my christian conscience.

The doctors here in England wanted to give me a blood transfusion as my blood count had gone down to 4.8! They gave me a 10% chance of living that night, and I can assure you that mentally and indeed physically, I fought with all my life that night. They gave me steroid treatment and saline drips. The upshot was that I spent 3 weeks in hospital. The doctors could not understand why I had survived. They then discovered that if they had given me a blood transfusion that I would most certainly have died. I did not have the immune system to cope with it.

Today, I still suffer a little from tiredness due to the glandular fever, but other than that, I have a 20 month old son and am very much alive and kicking!!!

Never be scared to stand up for what you want. It's your right as an individual, and as a patient.

If anyone out there needs encouragement, send me a private e-mail!

sister clubley
Your experience really encouraged me, its really faith strengthening when ONE reads experiences like this. Thank you for sharing it with us.
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Old 01-01-2004, 08:49 AM
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http://www.eprex.com/

Quote:
Originally Posted by driddick
Hi Jan, do you have anymore information on the European product that does not contain albumin? Any idea about whether it costs more or less because of not containing the albumin?
Here's all the info you need
http://www.eprex.com/
__________________
Mr. Jan B. Wade
Blood Management Consultant
Enhance Outcomes - Control Cost
For Information Call - 360 296-1807
Email

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Old 01-01-2004, 01:06 PM
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Quote:
Originally Posted by jbwade
Here's all the info you need
http://www.eprex.com/
Eprex has a competitor in Europe. It is called Recormon, albumin-free recombinant epoetin beta, manufactured by Roche. Check the prices because here in New Zealand we can get Recormon cheaper than Eprex.

David A.
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