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Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/23/2007 5:30 PM (GMT -7)   
Barbara,
I saw you mention in another post that you need a bone marrow transplant. What type of cancer do you have?

For the past 21 months I have been working with a good friend of mine to help fine a bone marrow donor for her brother who suffered from AML. Unfortunately we never found a donor for him and he passed away 10/5. His hope was that we would continue to look for people to register with the Bone Marrow Registry and help save a life. This is what we will do to continue his legacy.

I just wanted to let you know that there are people out there who care and are trying to do something about the lack of bone marrow donors.

Good luck!
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Toradol, Percoset, Loratab
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/23/2007 6:08 PM (GMT -7)   
Hi Gidget:

First off, I'm so sorry that your good friend passed away. It's so hard to loose someone we care for. I'll say a prayer for you today and your friend.

I've got myelodysplastic syndrome, 35-40% of MDS patients advances into full blown leukemia. MDS is also known as "pre leukemia" or "smoldering leukemia". I'm currently in stage two of my MDS. MDS is mostly in the elderly so they can't get bone marrow transplant after the age of 60. Since I'm only 42 I'm going to need a bone marrow transplant to save my life.

Lets see if I can explain so you understand. If we were to do a transplant this week, my chances of living through it would be like 35%. My bone marrow is working at about 60% right now, and the fact that I stand a 35% chance of dying my doctor won't take that risk. As my bone marrow continues fail me more daily, weekly, monthly, yearly, then my odds are getting closer together. Hence, at some point my bone marrow will be totally failing me and I'm going to die no matter what they do, so it's worth the risk to try the transplant. I hope I explained that clear enough.

My oncologist figures I'm going to be in a position that I'll need the transplant somewhere in the next 5 years. It's just a matter of waiting for the bone marrow to die more. I thank you for reminding me that there are people out there who are wanting to help people like me. I think it's a wonderful thing you're doing in your friends memory. I wish you the best and thanks for your positive sharing with me.

Love,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/23/2007 7:28 PM (GMT -7)   

Gidget that's wonderful what you and your friend are doing. Barb, I don't know if they would even use my bone marrow but hey if it was a match you are welcome to it.

love ya

carol


God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/23/2007 7:46 PM (GMT -7)   
Same here, Barb. I produce lots of red blood cells and have strong thick bones and would be willing to donate marrow for you if there's a way I can get it done. I'm far away and on medicare but let me know what to do and I would be glad to help you if I can. You are one year younger than me. I've got so many scars anyway that another one is actually a curiousity at this point.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/23/2007 8:53 PM (GMT -7)   
Barbara,
Making you wait for a transplant makes no sense whatsoever. Do other doctors feel you should wait too? I'm really sorry that you have to go through this. It's bad enough to have Lupus but then to add everything else to it has to be hard for you. You will be in our prayers and remember that we are working to help find you a match. My husband sent his cheek swab in a month ago and is now on the Bone Marrow Registry. Since I was unable to donate we also sponsored two people to be tested.

God bless you!



To everyone else ... Unfortunately those of us with Lupus, Fibromyalgia or any other type of autoimmune disease would be exempt from being able to donate bone marrow. When there is a blood drive you can donate bone marrow but believe it or not they charge you! All the Blood Banks care about is blood, they don't care that there are people out there in desperate need of bone marrow. There might be a blood bank in your area that collects platelets. I'll post more information about that for anyone who is interested.

There are other ways you can help if you are personally unable to donate. You can enlist the help of others who do not have an autoimmune disease or you can sponsor a test. A cheek swab costs $55.00. Talk to your friends and if they are willing to be tested, you can always pay for the $55.00 test fee.

If there is anyone who would like more information on bone marrow donors please let me know and I would be more than happy to send you information on the procedures of donating bone marrow and how you can help people like Barbara.

Did you know that there are close to 300 million people in the U.S. and only 1% of the entire U.S. population has been tested and is in the National Marrow Donor Program?

It doesn't matter where you live, if you are a match to someone in the world needing a bone marrow transplant the insurance company of the person in need would pay all expenses in collecting the bone marrow. There would be NO costs to the person who donates.
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Toradol, Percoset, Loratab
 
There is no psychiatrist in the world like a puppy licking your face.
 
 

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