Blood Donation: Part Two.

So I went to a Myeloma foundation and the person there tried to answer my question on her own. She did advise me to bring this up with my doctor but, as we saw in part one... that is a non-starter.

She stated:

Our bone marrow is constantly producing new hematopoietic cells to replenish the cells that are currently in circulation, working at their various jobs; red cells carry oxygen in the blood stream, various white blood cells fight infection and platelets help our blood clot if we get cut. Each different cell type has a different life span, but they all need to be replaced whether they live days or weeks.

Ok so far so good. 

I have trouble understanding why donating a physiologically safe amount of blood would cause abnormal stress on the bone marrow. 

So here is the problem. I have trouble understanding why they can't understand my concern and they simply NEVER TELL ME WHY? So frustrating. Presumably losing a lot of blood cells at once is going to stress the factories that will need to make new ones in quick time and, under stress, I worry it would be more likely they would go for broken stem cells to make new WBCs that were lost. 

She continues:

I have not read any studies showing blood transfusions caused myeloma to become active. 

Here is the problem with this. People with MGUS will be advised not to donate blood to other persons. So it is very likely that no one with MGUS will donate blood and therefore no one will ever find out if it causes issues. Never mind that with the limited funds for MGUS research NO ONE is going to do a study on this.   

Later on, without my requesting her to she

I wrote to Dr Robert Kyle, who was with the Mayo Clinic for many many years and is most knowledgeable regarding MGUS. He responded to your questions as follows. 

Yeh that is right, Robert A. Kyle, MD, Luminary in Myeloma Research -- that guy, you know the FATHER of MGUS.  He stated:

There is no evidence to his knowledge that donating a sample of blood on an ongoing basis would cause the MGUS to progress.  In fact, he doubts that there is any harm to the recipient, but there is no data in this regard.  As a prospective blood donor, one should tell the Blood Bank that they do have a MGUS and the Blood Bank will probably turn them down as a donor. A larger MGUS could have circulating plasma cells, but that is unlikely to be a problem for the recipient.

Ok but here is the problem... of course there is no evidence. People with MGUS are advised not to donate blood - as he rightly states (and completely contradicts my hematologist /oncologist team).

He goes on to incorrectly state that there is no benefit to donating blood.

There is no benefit in giving a research sample other than “participating” in the research project. 

I have to disagree. There is a lot of benefits to blood donation, in particular with regard to cardiac issues. 

In closing he did provide another good nugget of information:

[he had] wondered if you were referring to the use of plasmapheresis if there is too high a protein level in the blood, thinking it would be similar to donating blood and might explain benefit. He explained that hyperviscosity does not occur in MGUS except for extremely rare situations.

That is good to know. At this point I figured I better just shut the heck up over it. My name was on the e-mails and I don't want to get a "reputation" - I had decided that maybe I just shouldn't donate blood at all.   More in Part 3.

Blood Donation: Part I.

This is raring its ugly head again. Due to my high ferritin level I might want to donate blood again.  The simple fact is that ever since I stoped getting my period, my RBCs, Hemoglobin, etc are frighteningly high. Now my ferritin level is high and, that means, my iron is high. None of that is good. So you might say, well, do you have Hereditary hemochromatosis? I doubt it. First, I did "23 and me" and it didn't have the variants for it.  Second, no one in my family has it. I think it is just that my body naturally is good at accumulating iron and frankly I probably over did it on the red meat. 

Blood Donation has a ton of health advantages that are proven. Benefits of Donating Blood  Lower risk for heart disease. Lower risk for stroke.  Lower damage from blood sugar. More flexible red blood cells. Heck my job will even give me leave time to do it. IMHO this is particularly important to someone like me who has IGM and can have increased blood viscosity. Unfortunately, I am depressed to say that even some of the most esteemed doctors don't know anything about this and deny it (without knowing the facts). 

You might say, well ask your doctor about the high iron / ferritin but my doctor is imho far too liberal with her allowances for my body.  She wants to see massively bad results before she will do anything. A small overage is imho time to act.  I get that sometimes blood tests are off and you shouldn't take action based on one blood test, but, I also feel like all these little damages to my body will result in worse health over years and I have seen issues with high iron before (due to a supplement with it).

Also, I fear that blood donation could make my MGUS worse and no matter how hard I try, I cannot get an answer to this. 

First, I asked my hematologist / oncologist. Not only did that incompetent tell me that it was perfectly fine to donate to other people... BUT her boss, who was covering on the day I asked - the head of the hematology / oncology department - told me it was perfectly fine to donate to other people.  They even put their money where their mouth was by writing me a letter stating it was ok. It was clear to me this was not a scientific pronouncement but both HER and her bosses' - Uninformed Opinion.  This was the first sign I had that these doctors were incompetent.  Needless to say I didn't do that.

So I decided to donate to research. The research company was happy to have my MGUS blood and all was disclosed. They did ask me for a letter to insure that it was safe for ME to donate. (This was the first time it dawned on me there could be a danger) and all was fine. Until I got my first labs afterwards and they weren't fine. 

The problem imho was that my incompetent doctor put in labs for my MGUS without specifying a date when they would be run.  So when I went for labs for something else - 6 weeks after blood donation and months early for them - they were run. I suspect that messed up the results. Causing me needless worry.  My light chains came back high and my M-spike went up.  I suspect now this was because the volume of the blood was decreased slightly making them appear to go up. 

The good news... my numbers have returned to normal - 3 months later - but it still worries me. What if this was a sign that blood donation can cause problems with the donor. 

It seems like that could be the case. As far as I understand MGUS... it is a disease of your hematopoietic stem cells. Thus, when and if your body needs new plasma cells, such as an infection, your body sends out damaged stem cells in greater quantities than normal stem cells. (your body mistakenly selects damaged ones first) Thus you create "clonal cells" with your broken stem cells. Now your body creates new plasma cells all the time so you cannot stop this process, but, it would seem that perhaps you want to limit the "call" for mass creation of new plasma cells: less you simply keep creating new clonal cells.  Just like in a situation where you have an infection, it would seem that donating blood gets rid of a lot of white blood cells, and your body will then say *we need to make new white blood cells" - just like an infection. 

Finally, I asked a Myeloma organization that put me in touch with the Doctor that discovered MGUS... and even though he states that I should be fine, yup, I can't trust what he is saying. More on that in part two.