Mom in Hosp - Refusing Blood

by rwagoner 29 Replies latest jw friends

rwagoner

Hi all,
My mom is a dialysis patient and has had a couple of heart attacks. She is 65 or so...never celebrated a birthday so no real clue...
She went into the hospital yesterday with a bleeding ulcer...they thought they sealed it all up but her blood count continues to drop. Due to her dialysis she can only get IV's in one arm and it is difficult to find a good vein. She called tonight to remind me that I should not interfere with her care because they are having problems getting a decent IV for the plasma expanders...
Gee thanks mom...Hi son, I might die over a stupid leaking ulcer because my cult wont allow me get the transfusion I need...don't interfere, dont come visit...love you...hope I dont die but if I do dont show up at the hall and cause problems....
What the hell is wrong with these people....it just sucks...thanks for the vent...
Scully

I'm sorry to hear this news.
Do you know if the Hospital Liaison Committee is looking after her? Even though she won't take blood transfusions, is she aware that she CAN have injections of Epotin, which stimulates her bone marrow to produce red blood cells? The HLC needs to be aware of her admission, and they are the ones who can tell her that this form of treatment is OK (after you put a bug in her ear, of course).
Epotin doesn't start working immediately, but within a few days, her red cell count should start rising.
She should also be able to have infusions of Hemopure (the bovine hemoglobin Fraction™) that is allowed by the WTS. You can put a bug in her ear about that too, and the HLC can confirm it for her. This should quickly bring her oxygen carrying capacity back up to normal levels in the event that she requires surgery again.
Of course, locating the source of the bleed is of paramount importance.
The beauty of having YOU tell her this before the HLC does is that it sometimes can make a JW realize just how poorly informed the WTS keeps them on life-and-death matters like the one your mom is in right now. Why should she have had to wait until she is at death's door for them to tell her, "Oh by the way, we've had some New Light™ on this matter"? Especially when big bad ol' Apostates™ like us are better informed than the average JW is?
I hope your mom gets better.
ozziepost

rwagoner,
You have every reason to "vent" and I do sympathise.
Let me share with you that my own father died after refusing blood. During his last days I held his hand knowing that his refusal was taking his life as much as anything. Still, I felt no anger. I'm surprised how calmly I accepted it, I guess I knew that he had made his decision, just as I have made mine. He had a good life, he raised a good family, so i kissed him as he passed from this world.
No matter what happens with your mother, and I wish her well, in the end she must make her own decision, no matter how foolish it seems to you. She respects you to respect her decision. It's sad, but she's a victim, just like we were.
I hope it goes well with you.
Ozzie
blondie

Thanks, scully, excellent information. So many JWs, especially old-timers hammered with the NO BLOOD slogan, are unaware of the "adjustments" the WTS has made and need the HLC to "confirm" their WTS stamp of approval.
Blondie
blondie

Sorry to hear about this, rwagoner. It is so hard to stand by and do nothing. May your mother's doctors find what can help her through this.
Love, Blondie
Ellie

Thats very sad, I'm sorry

Scully

Epotin (also spelled Epoetin) is marketed under the trade names Epogen and Procrit. Considering that she is a dialysis patient, I am surprised that she is not on it already; perhaps she is and forgot to mention it to you. Or maybe she has declined it based on misinformation. Here is the patient information regarding this product:

http://www.epogen.com/patient/patient_info/educational_materials/epogen_and_you/what_epogen.jsp

What is EPOGEN ® ?

EPOGEN ® is a drug that helps correct anemia in chronic kidney disease patients on dialysis. It works just like the erythropoietin that healthy kidneys make. However, EPOGEN ® is produced by Amgen. At Amgen, scientists use genetic engineering to make copies of the hormone in a laboratory.

How does EPOGEN ® help?

Many dialysis patients who take EPOGEN ® notice they have more energy in 4 to 6 weeks. Some are even able to go back to their normal daily activities.

How do I know if EPOGEN ® is working?

Your dialysis center will do blood tests to see if EPOGEN ® is working for you. Usually you will undergo either a hemoglobin (Hb) or hematocrit (Hct) test.

Hemoglobin (Hb) (pronounced hee-mo-glo-bin) measures how much oxygen is in your blood.

Hematocrit (Hct) (pronounced he-mat-o-crit) measures the number of red blood cells you have in circulation. (Hematocrit is approximately 3x hemoglobin.)

The National Kidney Foundation (NKF) brought together a group of doctors, nurses, and scientists to set guidelines called K/DOQI (pronounced kay-doe-kee) that stands for Kidney Disease Outcomes Quality Initiative.

The NKF-K/DOQI guidelines recommend that you and your dialysis team try for the following:

	Hemoglobin: 11 to 12 g/dL
	(Hematocrit: 33% to 36%*)

Before starting EPOGEN ® therapy, chronic kidney failure patients often have hemoglobin levels below 10 g/dL.*

It takes time for bone marrow to make red blood cells. It will be several weeks after starting EPOGEN ® before your hemoglobin begins to rise.

How do I take EPOGEN ® ?

EPOGEN ® is given by injection. EPOGEN ® is a sterile, colorless solution. It is available in single-dose vials of 2,000, 3,000, 4,000, 10,000 and 40,000 Units (1 mL). It also comes in multidose vials of 20,000 Units (1 mL or 2 mL). Your doctor will prescribe the best dose and vial size of EPOGEN ® for you.

It may be given during a hemodialysis treatment right into the blood lines (intravenously, or “IV”) or into the skin (subcutaneously, or “Sub-Q”). If you are a home dialysis patient (peritoneal dialysis or PD) you may be able to inject EPOGEN ® yourself, with your doctor’s approval. In that case, you can use this booklet as a self-administration guide.

How often do I need to take EPOGEN ® ?

EPOGEN ® is given up to three times a week. The amount of EPOGEN ® your doctor prescribes will be determined by your weight. Usually larger people need more EPOGEN ® than smaller people. Your dialysis team will change your dose depending on your hemoglobin (Hb) or hematocrit (Hct) level.

This is why testing is so important. It helps your doctor decide the best dose for you.

Are there any side effects when taking EPOGEN ® ?

EPOGEN ® is used by many dialysis patients and is usually well tolerated. The most common side effects reported by patients on EPOGEN ® include high blood pressure or flu-like symptoms. These symptoms are often experienced by people with kidney disease and may not be because of EPOGEN ® . Because high blood pressure is common in dialysis patients, be sure to take your blood pressure medications as prescribed and check your blood pressure regularly.

If you have problems, tell your doctor right away.

What can I do to get the most out of my EPOGEN ® therapy, and get the most out of life?

You can take an active part in your own health care. Working together with your health care team will help you stay healthy and full of energy. Find out as much as you can so you can make good decisions about your health. You’ll also want to pay attention to the following things:

Blood pressure
Iron therapy
Medications
Diet
Laboratory monitoring schedule
Dialysis prescription

Blood Pressure

You’ll want to keep an eye on your blood pressure while you’re taking EPOGEN ® (Epoetin alfa). This is because when the number of red blood cells increases, as it does when you take EPOGEN ® , your blood pressure may also increase. Sometimes the blood pressure rises because your body may not be able to adjust to the change in red blood cells fast enough. If your blood pressure rises, your doctor has many ways to help you, such as: adjusting your dose of EPOGEN ® ; altering your dialysis treatment; prescribing blood pressure medication; or changing your current prescription if you are already on blood pressure medication.

Iron Therapy

EPOGEN ® and iron work as a team to make red blood cells.

Iron is an important “assistant” to EPOGEN ® . The body needs iron to make red blood cells. Every time you go for a dialysis treatment or a blood test, a little blood is lost, along with a little iron. People with kidney disease often run low on iron. Since the body doesn’t make iron, you need to get it from: the foods you eat, like lean meats and dark green, leafy vegetables; iron-containing pills, capsules, liquids, or in intravenous (IV) form.

If you are on EPOGEN ® , you will probably need iron supplements. Talk to your dietitian about what you should eat to improve your iron intake. Also, ask your doctor or nurse for the best way to get the iron you need. Without enough iron, EPOGEN ® may not be able to raise your hemoglobin into the NKF-K/DOQI target range of 11 to 12 g/dL.*

Medications

Always consult your doctor before taking any over-the-counter drugs, vitamins, food supplements, or herbal remedies.

Diet

Kidney patients must follow the special renal diet provided by their dietitian. By following this diet, you will get the right number of calories, while balancing your intake of potassium and other important nutrients. More energy and activity may lead to an increase in your appetite, but you should check with your dietitian before making any changes to your diet.

Laboratory Monitoring Schedule

Every so often, your doctor or nurse will take some of your blood for testing. Be sure you follow your schedule so your dialysis team can monitor red blood cell and iron levels. They need to do this to find out how you’re doing on your EPOGEN ® (Epoetin alfa) treatment.

You may want to keep track of your lab results and find out what they mean. Understanding your blood work is one important way you can play a part in your care. Make sure you ask someone on your dialysis team if you have any questions.

Dialysis Prescription

Be sure to follow your doctor’s instructions for dialysis treatment. The length of time and number of treatments prescribed are planned to remove waste material and excess fluid from your blood. It is very important that you follow your doctor’s orders.

fullofdoubtnow

rwagoner,
I am so sorry to hear about your mum, I do so hope that she recovers.
You have every right to feel the way you do. I will be thinking of you
love
Linda

Scully

http://www.biopure.com/shared/home.cfm?CDID=2&CPgID=53

This product is still in the trial phase of FDA Approval in the US, but special permission for its use in human patients can be granted for compassionate reasons.

OVERVIEW

A First-In-Class Oxygen Therapeutic
Hemopure ® [hemoglobin glutamer - 250 (bovine)], or HBOC-201, Biopure's first-in-class product for human use, is approved in South Africa for the treatment of adult surgical patients who are acutely anemic and for the purpose of eliminating, reducing or delaying the need for allogenic red blood cell transfusion in these patients.

In October 2002, the U.S. Food and Drug Administration (FDA) accepted for review Biopure's biologic license application (BLA) to market Hemopure in the United States for a similar indication in orthopedic surgical patients. This acceptance is the first time a hemoglobin-based oxygen therapeutic for human use has reached this stage in the U.S. regulatory process. On July 30, 2003, the FDA issued Biopure a complete response letter requesting additional information and setting forth all of the agency's questions as of that date.

As a prerequisite to further company-sponsored clinical trials in the United States, Biopure is currently addressing the FDA's questions regarding the product’s safety and efficacy and questions arising out of the company’s BLA. As part of this process, the company is conducting FDA-requested animal studies. Biopure is also developing Hemopure for other potential medical applications in trauma and as a cardioprotective agent in ischemic conditions.

Mechanism of Action

Hemopure consists of chemically stabilized bovine hemoglobin formulated in a balanced salt solution. On a gram-for-gram basis, this cross-linked hemoglobin carries the same amount of oxygen as the hemoglobin in red blood cells. However, these linked hemoglobin molecules circulate in plasma, and are smaller, have lower viscosity (resistance to flow) and more readily release oxygen to tissues than red blood cells. Consequently, they can carry oxygen at low blood pressure and can carry oxygen through constricted or partially blocked blood vessels to areas of the body that red blood cells cannot reach due to their larger size.

blondie

*** dx86-04 ERYTHROPOIETIN (Also called EPO)
alternative to blood transfusion: g94 1/8 28; g93 11/22 24; hb 15; g90 10/22 13
experiences:
internal bleeding: g92 10/22 13-14; g91 8/22 15

injections containing blood-derived albumin: g96 11/8 30; w94 10/1 31
***
g92 10/22 p. 13 Rescued From Near Death by Nonblood Treatment ***
I asked the doctor there, one of Jehovah’s Witnesses, to confirm to me that he had administered EPO (erythropoietin), a synthetic hormone that stimulates bone marrow to produce red blood cells at an accelerated rate. He said that he had.
***
hb p. 15 Quality Alternatives to Transfusion ***
Your kidneys produce a hormone called erythropoietin (EPO), which stimulates bone marrow to form red cells. Now synthetic (recombinant) EPO is available. Doctors may give this to some anemic patients, thus helping them to form replacement red cells very quickly.

Mom in Hosp - Refusing Blood

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