PDA

View Full Version : Aplastic Anemia...please read


RedHotTeacher
01-21-2007, 11:15 PM
This is a friend of mine and the girlfriend of one of my closest friends in the world...please read and forward on her message...this isn't a forward from a friend of a friend of a friend...at least not until you guys start forwarding the info...Sara is an amazing person...and this is scary :censor::censor::censor::censor::censor: -- when I mentioned Aplastic Anemia to my dad he turned pale...she can easily die if her bone marrow doesn't start working again and they don't figure things out...please, please, please...donate blood...you never know when your friend (or you) will need it...I have no excuse, I pass a blood donation center daily - more than once per day and I've never set foot in it...I haven't donated blood since college...this is my wake-up call...I hope to G-d it can be yours...



This is a lengthy email. Please read it in its entirety as my sister Sara Waldman is ill, and we need your help!

Many of you know Sara Waldman or know of Sara Waldman – my strong, sassy, smart, funny, spunky, athletic, lovable, amazing & awesome 27 year old sister who lives in Atlanta and is a pharmaceutical sales rep for Galderma Labs…many of you have even referred to Sara as “my favorite Waldman” which is absolutely reflective of how much love and goodness she puts off into the world. She’s always had an enormous fan base…and we want to call all of Sara’s “fans” and “extended fans” to the field to…


HELP SARA WALDMAN GET HEALTHY!


Unbelievably, “Super Healthy Sara” was admitted to the California Pacific Medical Center (CPMC) ER on Buchanan Street in San Francisco on Saturday night January 13, 2007 while visiting me for the weekend. She had bad swelling in her legs and was uncomfortable, but otherwise showed very few symptoms of being sick. Ultimately, she did not seem herself and we together decided to visit the ER to see what was happening to her. On admittance, Sara had an extremely low blood count. One of the ER doctors commented that Sara had “one of the lowest blood counts I’ve ever seen” and nearly 1/3 the level of red blood cells that are normal for a 27 year old super healthy young woman who works out 5-6 days a week and eats extremely smart & healthy. In true “strong & healthy” Sara fashion, she was admitted with a heart rate of only 57…when she should have had a heart rate in the 130s – 140s! Even with her bone marrow not working right, Sara is in amazing physical health!

She was immediately admitted and over the course of the subsequent days Sara was poked and pricked like a pin cushion. She had an exaustive battery of tests for viral infections, diseases, and organ functions and she transfused 4 units of red blood cells and a unit of platelets. Without question, these blood transfusions saved her life. She’s also had two bone marrow biopsies (see, she’s an overachiever!) as her Hematologist (an AMAZING guy – more on that another time) was extremely concerned about the decreased bone marrow production of all her blood cells. He also wanted to be certain that the biopsy results were conclusive. Through all of these tests and 6 days of “diagnosis fishing”, Sara remained extremely positive, playful and super enthusiastic!

Much of our family and Eric (Sara’s boyfriend in Atlanta) have come to San Francisco or are coming to San Francisco or have been on the phone to cheer on Sara and together focus on getting to the bottom of her symptoms…and on the path to treatment. My apartment has turned into Hotel Optimism with people and suitcases everywhere!

On Friday January 19th, 6 days after being admitted…and after careful consideration and analysis of all her tests, reviewing the results of her biopsy with nearly the entire pathology department at CPMC, consulting another prominent Hematologist at UCSF, and ruling out all other potential illnesses…Sara has been diagnosed with an extremely rare disease called aplastic anemia.

Aplastic anemia results from the unexplained failure of the bone marrow to produce enough blood-forming stem cells. Aplastic anemia patients have lower counts of all three blood cell types – red blood cells, white blood cells and platelets. Aplastic anemia is not a cancer, but is a very serious disease that is extremely rare affecting only an estimated 2 people per every million in the United States. Read here for more information: http://www.mayoclinic.com/health/aplastic-anemia/DS00322 (http://www.mayoclinic.com/health/aplastic-anemia/DS00322)

Remarkably, Sara does not even look sick. “Healthy Sara” is in great spirits and has an extremely positive attitude and outlook. She knows that this disease is no match for her sass, spunk, energy, enthusiasm and super-positive attitude, the entire Waldman family, and her extended family of “fans” -- friends, co-workers, clients, neighbors, and loved ones. It’s the “former college cheerleader” in her shining through and infecting everyone around her with a phenomenal outlook for her treatment! Sara is also the MOST POPULAR patient at CPMC right now. All the nurses want to be assigned to help Sara get healthy!

Without a doubt, Healthy Sara will kick the s**t out of this aplastic anemia!

Because of the severity of aplastic anemia, she is starting her treatment immediately here in San Francisco until she is cleared to continue her treatment in Atlanta. All of us, and especially Sara, are thrilled with the capability and pedigree of her health care providers, and are confident that Sara is receiving fantastic attention and care from everyone at CPMC and from our extended SF - Seattle – Atlanta – New Orleans medical community that we have tapped into over the past few days. We want to extend a huge thank you to everyone that has been on the “extended medical team”.

For aplastic anemia, the initial treatment will be two cycles of two weeks each, or about one month long. She will be in the hospital until late next week where she will receive 4 days of intravenous & oral treatments of drug therapy. These drugs are designed to suppress the activity of immune cells that are damaging her bone marrow. This will help her bone marrow recover and generate new blood cells. After the initial drug treatment, she will recover for about a week in San Francisco where she’ll have her vitals and blood levels monitored to see how well her body takes to the medication. After the recovery week, she’ll repeat the treatment cycle a second time – either in San Francisco or Atlanta.

We are all very hopeful that Sara will respond extremely well to this treatment. We strongly believe in Sara and we know that her strength, perseverance, sass, spunk and extremely healthy attitude will carry her through kicking the s**t out of aplastic anemia!


MANY OF YOU HAVE ASKED US “HOW CAN I HELP”…

HERE’S HOW YOU CAN MAKE A DIFFERENCE FOR HEALTHY SARA!


Open the attached “Help Sara Waldman” cheat sheet and place a copy on your refrigerator at home or by your desk at work! Also, please help us with any (or all) of the following in support of Sara and the entire Waldman family:


1. With much of our family in town, we are running out of room at Kevin’s house. If anyone you know has a furnished 1-br apartment or bigger place in San Francisco’s Pacific Heights district that is not being used for the next 2-3 weeks, then please let us know ASAP. We would be especially grateful for any help you can provide here!

2. Send positive energy & encouragement to Sara! Say a prayer for her and send some of your strength to Sara!

3. Sara would love to hear words of encouragement directly from you! She has a special email account here: email (healthysara@gmail.com) erased - let me know if you want it...

4. Forward this email to at least 3 of your friends, family or loved ones. PLEASE ask them to take a few moments to send Sara healthy energy & support.

5. Donate red blood cells (and platelets) at your local blood center – regardless of your blood type! Transfusions of red blood cells and platelets saved Sara’s life, and will continue to provide a lifeline for Sara during her treatment. Sara is taking blood out of the “bank” and we need to help replenish the supply for countless other patients that need blood.

6. Send Sara a card wishing her well. You can reach her via snail mail at Kevin's house. Please don't send packages here, email Kevin if you are planning to send a package as we'll give you a better address: address erased - let me know if you want to send anything...

7. Buy a Cetaphil product at your local drugstore. Sara’s company – Galderma – is the maker of Cetaphil and everyone at Galderma has been amazingly supportive of Sara. Let’s all show our support of Galderma by purchasing a Cetaphil product at the store (especially if you are in Atlanta as Sara’s territory is Atlanta!).

8. Root for the New Orleans Saints on Sunday! WHO DAT!

9. Because Sara’s immune system is compromised, Sara cannot receive fresh flowers. She also cannot have raw fruit or raw vegetables.

We feel amazingly lucky to have a deep and wide community of friends and family all over the US, Canada, and Israel! We are all touched by the outpouring of emotion and your love, support & encouragement of Sara, and your wishes of good health and a speedy recovery. We are truly blessed and absolutely need your continued support and positive energy as Sara kicks the s**t out of aplastic anemia!

We’ll try to provide an update in a few days about Sara’s treatment and her amazing attitude, outlook and energy! Thank you so very much for all of your support.

With all of our love and gratitude,

Sara Waldman’s Fan Club!

EricKoske
01-22-2007, 12:43 AM
Donating blood can be fun!

1. The whole time you're waiting in line, if you have to wait at all, they feed you. Frequently cookies and juice, but they are generally very enthusiastic about getting food into you.

2. After you finish donating, you're often quite light-headed. Feels a little like being drunk, but without that nasty tequila aftertaste.

3. Once you leave the Red Cross building, you have that warm fuzzy feeling that comes from knowing you did a good thing for someone else and have a sticker and/or ribbon you can wear all day to remind yourself (and others) about it.

About a week after the last time I donated blood, I donated platelets, which seems more intimidating at first, but here's where they *really* pull out the stops to make you comfortable. I got to sit in a nice recliner and watch rented movies while somethign vaguely resembling a dialysis machine separated out the platelets from my blood and gave the rest back. Unlike donating whole blood, you don't get all woozy afterward. They wait on you hand and foot. Mostly because it takes longer than donating blood and you have a needle in each arm so you can't even scratch your nose by yourself. No matter. A nurse'll be happy to scratch your nose for you. Or get you a blanket or heating pads or a drink or whatever. And you can donate platelets every couple days rather than weeks. Cool! You might never have to rent a movie again!

The last time I donated blood was, sadly, September 11th, 2001. I'd have donated more blood more often, but not long after that, there was the whole 'mad cow disease' scare and the Red Cross decided that anyone who'd been in Europe for more than about three months during exactly the time my family was stationed in Spain, was no longer eligible to donate blood, at least until they develop a test for mad cow carriers.

So, until they develop a test to prove I'm not a mad cow, I have to rent my own movies and buy my own cookies and juice.

*sigh*

hpuem
01-22-2007, 03:28 AM
coincidentally, i was hangin with a lot of doctors friday night and i found out the next day that if you were in england during all the mad cow stuff then you cannot give blood

RedHotTeacher
01-22-2007, 08:39 AM
coincidentally, i was hangin with a lot of doctors friday night and i found out the next day that if you were in england during all the mad cow stuff then you cannot give blood

I may not be able to donate blood, either then...that's the most upsetting thing I've ever heard!

RedHotTeacher
01-22-2007, 09:46 AM
I got this information from the American Red Cross website...


In-Depth Discussion of Variant Creutzfeld-Jacob Disease and Blood Donation
In some parts of the world, cattle can get an infectious, fatal brain disease called Mad Cow Disease. In these same locations, humans have started to get a new disease called variant Creutzfeld-Jacob Disease (vCJD) which is also a fatal brain disease. Scientists believe that vCJD is Mad Cow Disease that has somehow transferred to humans, possibly through the food chain.
There is now evidence from a small number of case reports involving patients and laboratory animal studies that vCJD can be transmitted through transfusion. There is no test for vCJD in humans that could be used to screen blood donors and to protect the blood supply. This means that blood programs must take special precautions to keep vCJD out of the blood supply by avoiding collections from those who have been where this disease is found.
At this time, the American Red Cross donor eligibility rules related to vCJD are as follows:
You are not eligible to donate if:
From January 1, 1980, through December 31, 1996, you spent (visited or lived) a cumulative time of 3 months or more, in the United Kingdom (UK), or
From January 1, 1980, to present, you had a blood transfusion in any country(ies) in the (UK). The UK includes any of the countries listed below.
Channel Islands
England
Falkland Islands
Gibraltar
Isle of Man
Northern Ireland
Scotland
Wales
You were a member of the of the U.S. military, a civilian military employee, or a dependent of a member of the U.S. military who spent a total time of 6 months on or associated with a military base in any of the following areas during the specified time frames
From 1980 through 1990 - Belgium, the Netherlands (Holland), or Germany
From 1980 through 1996 - Spain, Portugal, Turkey, Italy or Greece.
You spent (visited or lived) a cumulative time of 5 years or more from January 1, 1980, to present, in any combination of country(ies) in Europe, including
in the UK from 1980 through 1996 as listed in above
on or associated with military bases as described above, and
in other countries in Europe as listed below:
Albania
Austria
Montenegro (Federal Republic of Yugoslavia)
Belgium
Bosnia/Herzegovina
Bulgaria
Croatia
Norway
Poland
Czech Republic
Denmark
Romania
Finland
France
Slovak Republic (Slovakia)
Germany
Greece
Spain
Hungary
Ireland (Republic of)
Italy
Kosovo (Federal Republic of Yugoslavia)
Liechtenstein
Luxembourg
Macedonia
Netherlands (Holland)
Portugal
Serbia (Federal Republic of Yugoslavia)
Slovenia
Sweden
Switzerland
Turkey
Yugoslavia (Federal Republic includes Kosovo, Montenegro, and Serbia)
Travel Outside of U.S., Immigration
Wait 12 months after travel in an area where malaria is found. Wait 3 years after living in a country where malaria is found. Persons who have spent long periods of time in countries where "mad cow disease" is found are not eligible to donate. This requirement is related to concerns about variant Creutzfeld Jacob Disease (vCJD). Learn more about vCJD and donation (javascript:popUp('/services/biomed/blood/supply/cjdv.html','toolbar=no,location=no,directories=no, status=no,menubar=no,scrollbars=yes,resizable=yes, width=500,height=350,left=100,top=100')). Persons who were born in or who lived in certain countries in Western Africa, or who have had close contact with persons who were born in or who lived in certain West African countries are not eligible to donate. This requirement is related to concerns about HIV Group O. Learn more about HIV Group O, and the specific African countries where it is found (javascript:popUp('/services/biomed/blood/supply/HIVo.html','toolbar=no,location=no,directories=no, status=no,menubar=no,scrollbars=yes,resizable=yes, width=500,height=350,left=100,top=100')).
So - it looks like most of us are eligable...at least according to the red cross...

HartS2K
01-22-2007, 10:14 AM
Sorry to hear about your friend. A good friend of mine was diagnosed with aplastic anemia about 4 years ago. He finally came off the immunosuppressors about 6 months ago after they discovered he was clotting again.

Anyway, I believe you can donate platelets every 2 weeks and blood every roughly 6 weeks. Just pulling numbers out of my head - not ass - from when I would donate on a regular basis. They do let you watch a rented movie while donating platelets and if you give blood on a Thursday for Friday, it is significantly cheaper to get drunk the weekend. My classmates and I did this on a regular basis while in school. Both the platelets and the whole blood.

1QUICK1
01-22-2007, 11:43 AM
I already gave blood the Sat before last, at the Monroe Drive, American Red Cross location
(damn vampires call me constantly to donate ;) ).
I try and go when I can (and when I feel healthy enough) since I have a common blood type, A positive.
Whole blood donors may give once every 56 days. (So I'll be going again in March)
After processing, the red cells can be stored up to 42 days.

I've thought about becoming a Platelet donor.
Platelets can be donated every two weeks, up to 24 times a year!
Unlike red blood cells, platelets can only be stored for five days.
And I believe one platelet donation can be utilized for multiple recipients.

And unlike whole blood donation, platelet donors normally don't show any ill effects afterward (light headedness).

I'm also on the bone marrow registry. www.marrow.org (http://www.marrow.org)
I registered once during a blood drive.
While registering is harmless, I've heard that donating marrow is extremely painful.
However I would endure the pain, if I knew my bone marrow could save someones life.

RedHotTeacher
01-22-2007, 12:07 PM
Thanks, Tom - I'll look into all of that...I've heard that platlet donation is painful, too...but...it's worth it...people need it...

EricKoske
01-22-2007, 12:18 PM
Painful? when I donated platelets, it wasn't anything of the sort.

Yeah, you have one needle in each arm, but that doesn't hurt any more than giving blood does, and I regularly hurt myself worse than that just washing the car. I still have bruises on the tips of three fingers/fingernails from washing my wheels last week.


The mad cow screening rules single me out here:

You were a member of the of the U.S. military, a civilian military employee, or a dependent of a member of the U.S. military who spent a total time of 6 months on or associated with a military base in any of the following areas during the specified time frames

From 1980 through 1990 - Belgium, the Netherlands (Holland), or Germany
From 1980 through 1996 - Spain, Portugal, Turkey, Italy or Greece.I was a dependant on an Air Force base in Spain from 1982 to 1985. Bleh.

1QUICK1
01-22-2007, 01:39 PM
I've heard that platlet donation is painful, tooPlatlet donation doesn't seem too painful (haven't done it myself so can rightly say). But people were donating platelets at the Monroe Drive Red Cross at the same time I was donating whole blood and they didn't seem uncomfortable. They just had a longer process and had needles in both arms. Blood is drawn from one arm, separated from the platelets and then returned to the other arm. Some brought portable DVD players or iPods.

I was in and out in under an hour. Most of the time was spent waiting to be screened and then the screening. Donation only took 10 minutes (I'm a quick bleeder).

tamara16
01-22-2007, 01:51 PM
Yes, bone marrow is very very very painful. I had it done when I was a kid. It's not very plesant but does save peoples lives.

TraviS2000
01-22-2007, 03:37 PM
coincidentally, i was hangin with a lot of doctors friday night and i found out the next day that if you were in england during all the mad cow stuff then you cannot give blood

Yup, I'm on the mad cow list. I lived in England from '86 to '90. It's always fun to watch peoples reaction when they ask you to give blood and I promptly respond with "Sorry, I have mad cow and the Red Cross has me on a list of people not allowed to donate."

BUT, I do wish I could give blood. It doesn't bother me at all and I wish I could help out...