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Old 04-24-2012, 05:12 PM
 
569 posts, read 530,619 times
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Quote:
Originally Posted by Neuling View Post
There was a program on donating bone marrow on TV today and they put it as though it was a simple thing to do, like donating blood.
I know little about it, but they said the donor automatically gets a health and life insurance covering the donation. That doesn't sound very motivating, even if bone marrow can of course help the recipient a lot.

Has anyone donated bone marrow and how does it work? Does it hurt?
I haven't but I was in the registry. I got called about 7 years ago and was a potential match for a little girl. They asked me several questions regarding my health and they said I could not donate due to a disk problem. I wish they would have told me that when I signed up for the registry.
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Old 09-04-2012, 09:37 AM
 
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Neuling

If the thought of cost (I can't really comment on that - I guess suzy_q2010 was describing the system in the US, I'm in the UK, which as you probably know, is different. The NHS, for all the dreadful press it gets in the US, is an absolute godsend when things get serious), or the thought of blood is too much for you... maybe you are thinking about the wrong thing for the wrong reasons. I'm sure there you'll find other pain free ways to feel rewarded, if you go and seek them, but perhaps this isn't one.

As someone on the other side (had several bone marrow biopsies, may some day need a stem cell donor), I'd suggest that you think about this from the perspective of the things you are willing/ keen to do in life to help others. Your bone marrow might save someone's life. Personally, I never joined a bone marrow register, or even gave blood, when I was healthy. I don't like needles either (but I'm learning there are bigger things to fear). Maybe my "decision" (or really, lack of one) was reasonable, maybe it was selfish. Not sure. Knowing what I know now, I'd donate tomorrow - but of course, no-one would want mine now.
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Old 10-28-2012, 12:45 PM
 
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I heard a lot about bone marrow donation, before I donated. My experience was very different from what I heard before I donated. First, I found out that there have not been conclusive long term studies done on the genetically engineered drug that is required prior to peripheral blood stem cell (PBSC) donation, and that same drug is associated with an increased chance for developing leukemia in certain clinical groups. So, I decided against that donation method. I just was not willing to be another test patient for a drug with unknown long-term effects, as I had been with the drug Fosamax.

At age 63, I was cleared for bone marrow donation to a sibling with leukemia. Perhaps because of my age and perhaps because of the particulars of my donation, I did not recover in "a couple of days" as others had told me. It took three months before I was cleared to go back to doing physical work. The problem was that there were two surgeons working on me during the donation procedure, and one of them did a terrible job on the left side, leaving me with extensive bleeding problems and a large hematoma on that side. Also, my donation amount was large, over 1.4 liters. It took a long time to get my blood numbers and heart rate back into the normal range again.

Despite all those problems, I feel that the donation was the right choice. I could not have lived with myself just standing by as my brother was dying of leukemia. My main point in writing this is to present another realistic experience about the donation process.
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Old 10-28-2012, 12:56 PM
 
Location: Georgia, USA
21,485 posts, read 26,089,700 times
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Quote:
Originally Posted by Peter7 View Post
I heard a lot about bone marrow donation, before I donated. My experience was very different from what I heard before I donated. First, I found out that there have not been conclusive long term studies done on the genetically engineered drug that is required prior to peripheral blood stem cell (PBSC) donation, and that same drug is associated with an increased chance for developing leukemia in certain clinical groups. So, I decided against that donation method. I just was not willing to be another test patient for a drug with unknown long-term effects, as I had been with the drug Fosamax.

At age 63, I was cleared for bone marrow donation to a sibling with leukemia. Perhaps because of my age and perhaps because of the particulars of my donation, I did not recover in "a couple of days" as others had told me. It took three months before I was cleared to go back to doing physical work. The problem was that there were two surgeons working on me during the donation procedure, and one of them did a terrible job on the left side, leaving me with extensive bleeding problems and a large hematoma on that side. Also, my donation amount was large, over 1.4 liters. It took a long time to get my blood numbers and heart rate back into the normal range again.

Despite all those problems, I feel that the donation was the right choice. I could not have lived with myself just standing by as my brother was dying of leukemia. My main point in writing this is to present another realistic experience about the donation process.
Peter, I hope your brother did well. I know he must appreciate your stepping up to the bat for him.
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Old 10-28-2012, 08:56 PM
 
10,339 posts, read 7,596,357 times
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Quote:
Originally Posted by suzy_q2010 View Post
Removing bone marrow is painful. If only enough for a biopsy is needed, then usually only a local anesthetic is used, because it is a very quick procedure.

For a donation, major anesthesia is used. It can be general anesthesia (you are asleep), a spinal or an epidural. About 75% of people are asleep. The general anesthesia does not have to be deep, and it is short, since even the harvest for a donation does not take long. There is some risk associated with any anesthesia, and you need to be willing to accept that.

The procedure itself involves inserting a large hollow needle into the large wing shaped bone of the hip and using a syringe to withdraw the marrow. A small incision (about 1/4 inch long, no stitch needed) is made to make it easier to get the needle through the skin. Two to four sites may be needed. A donation for a small child would need less marrow than for an adult, for example. You usually go home the same day that you donate, and the soreness from the punctures goes away quickly. You are back to full activity in a few days.

It is possible to donate stem cells, also. These are harvested by withdrawing blood from one arm, sending it through a machine that removes the stem cells, and returning it to the other arm. no anesthesia is needed.

See here:

Join the National Bone Marrow Registry - Volunteer Guide

Donation FAQs

Less than 2% of people who register as donors actually end up donating. Just remember that if you have an uncomon tissue type, you may be able to save the life of someone who has no other potential matches.

The cost of testing is about $100. That is a relatively small donation to make for a good cause. You could even ask someone to sponsor you or give you the money instead of a birthday or other gift.

Actually making a marrow donation will cost you nothing. The recipient pays the donor's costs.

Minority donors are greatly needed.

I commend you for considering placing your name in the registry.

Here are some donor stories:

My Personal Experience as a Bone Marrow Donor - Brian E. Beattie | OncoLink Cancer Resources
I used to work for the National Marrow Donor Program. The donor does not pay for the cost of testing or anything to do with actual donation. There is a charitable donation fee of about $25 to join the registry sometimes. On the other hand each NMDP Donor Center has the funds each year to do the serological testing to get a few hundred or more donors on the registry at no cost to the donors. Especially for African Americans and other minorities, since it is more difficult to find matches for them.

Once you have been identified as a potential donor for a person who has a blood born illness such as leukemia, you are contacted and go through further screening, including DNA based analysis of your blood. There are no costs to you at any point in this process.

The surgical bone marrow procedure is done under anesthesia and there might be some soreness afterwards. But I have never heard anyone refer to it as very painful. Any follow-up medical care is at no cost to you. People with bad backs are sometimes excluded.

The Peripheral blood stem cell removal method is similar to donating blood. You are hooked up to a blood draw, and for a few hours your blood is removed and filtered for the needed hematopoetic cells. Before that procedure you take a drug called Filgrastim for a few days in order to increase your stem cell production. There is no pain, although we sometimes exclude people with bad backs from donating because you do have to be able to sit still for a few hours.

Before donating, you receive a full medical physical and EEG tests etc, free of any charge to you.

It is an anonymous donation, although after a few years , if the donor and recipient both agree, they can be in contact.
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Old 11-30-2012, 01:41 PM
 
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I donated stem cells via PBSCT in September 2012 to a man I do not know who has leukemia. The filgrastim shots were not too bad. Believe it or not and as scary as it sounds, shots in the stomach DO hurt a lot less. In fact, they didn't hurt at all really. And I'm a super big baby about shots! The effects of the filgrastim were not fun, but only really the 4th day was difficult. I had pain in my lower back that advil didn't help much. The heating pad was my best friend that day. The fifth day I was too excited about the donation that I don't recall feeling any bone pain from the filgrastim. The nursing staff are so excellent and they really treat you like a queen that any pain from the needle insertion was very minimal. I was on the apheresis machine for about 4 1/2 hours, but my boyfriend kept me entertained with a Meg Ryan movie marathon so it felt like it flew by. I had a nice lunch while on the machine, but didn't drink much liquid because there's no way to use the bathroom. Using a bed pan was the LAST thing I wanted to do, so I didn't drink much. By the way, the NMDP folks tell you all these helpful tips all along the way so you're going to be well-prepared. After the donation procedure, I was a bit tired. But I truly think it was just from being in a strange city and not sleeping great from anticipation.

Bottom line: I would definitely do this again. I feel so good on so many levels that I was able to help this man and give him hope. I feel a deep connection to him although I will never be able to know him (international protocol at his transplant center will not allow us to ever have direct contact). When I think about him, I send out all my best prayers, wishes and good thoughts to the universe and hope that he is getting all that somehow.

Don't worry about the fact that there is insurance provided for you. It's a good thing! The chances are so so minimal that you will need to use it though. I'm no spring chicken (47 years old) and I had no issues requiring me to use it.

And believe me, you'll come to see the blood you give as a life-saving, precious gift to this person. Seeing blood used to gross me out, now I see it all in an entirely new light. I thank god for MY experience and how I've grown with having gone through this donation. I gave whole blood a few weeks ago, but am thinking about becoming a regular platelet donor (platelets are needed even more than whole blood). So, even if you're never called to donate stem cells, you CAN donate platelets. Think about it. You'll feel great!
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Old 02-21-2013, 09:04 PM
 
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I am a recent bone marrow donor. For all of you wanting to know, it is for sure not painless as mentioned above. To be real, there is pain. It took me about a week for the pain to subside and a few weeks to be back to normal. I was extremely tired for a while. It is like a major surgery. Not sure why some are pawning it off as being nothing. It is however very worthwhile because you are saving someone's life. Donor should not have to pay anything. Period. They are already giving so much of themselves.
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Old 02-25-2013, 09:23 AM
 
Location: Cartersville, GA
1,253 posts, read 2,857,902 times
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As a Leukemia survivor, I urge everyone to be a part of the bone marrow registry. A close relative (parent, child, or sibling) has only about a 25% chance of having bone marrow that is compatible with a given individual. As a result, many cancer victims cannot rely on a close relative for donation. Someone who is unrelated has a very slim chance of matching. It does happen, though! In the unlikely event you are a match for a cancer victim, it is likely that that person will die if he/she does not get your bone marrow. As SusyQ said above, donation involves a surgical procedure for the donor. It is not nearly as straightforward as donation blood, but arguably less burdensome that donating a kidney. Bone marrow transplants are therefore only considered after other measures (such as chemotherapy and radiation therapy) have failed.

Would you undergo an outpatient surgery, with perhaps a 1-2 day recovery, if this could save the life of a child? If so, sign up today!

I fortunately never needed a Bone Marrow transplant. However, if this measure had been necessary in my case, I would have relied on a donor who was not related to me, as my parents and brother do not have matching bone marrow.

How many children have died because someone out there with compatible bone marrow never signed up for the none marrow registry? There is not way quantify this. "Too many" is the only answer I can come up with.
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Old 11-23-2015, 07:08 AM
 
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I donated bone marrow earlier in the year and I joined the registry a few years ago and was excited when I got the call to donate. Every visit was covered, from start to finish and my hotel stay was paid for, they asked me to bring a family member or friend to go with me on my donation day and their hotel costs were covered as well as mileage and food for the two days that we were there. I first went in to the doctors office to donate some blood so they could test it further to confirm that I was a match and that I was free of any diseases. I started a dose of filgrastim shots 5 days before my donation and was monitored closely and checked up on by the registry every step of the way. I did have some aches and pains due to the shots but nothing too bad, otc pain meds took care of that. I have terrible veins so they could not collect through my arms. I had to have a central line placed in my upper shoulder and was under mild sedation so that I would not feel a thing and I didn't. After this I was monitored for a while and went over to be connected to the machines to donate my peripheral blood cells. The whole process took about 7 hours and the nurses were awesome, I was able to get up and go to the bathroom and I was able to eat and drink and sleep during this process. After my donation was complete I was able to pray over my cells along with the nurses and the carrier arrived to take the cells to the awaiting patient. I soon went back to the hotel afterwards and was told to take it easy for the next few days and was feeling 100% after 2 days. The only side effect afterwards was feeling a little tired, so I slept and that took care of that. I believe I've covered everything there is to ask, all I know is that the person receiving the donation was in another country and I was informed of her condition. The registry still checks up on me to this day and gifted me a tshirt and a lovely vase. I believe you can only donate 3 times in your entire life, they don't want you to feel as though they are using you. If I had any questions the registry was more than happy as well as the doctors and nurses to inform me and make me feel comfortable with everything. I would donate 100x if asked to. I was a part of Be The Match.org. All I had to do was go to the website and request a packet, fill out the info and swab the insides of my cheeks and they will have you in the database.
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