Ask the guy who doesn't make blood!

In My Humble Opinion
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In Blood Drive – Third Annual!, I told people that I received blood transfusions about eevry month or month and a half. Opal expressed interest in hearing more about it, and I thought others would as well, so I’m starting this thread.

I got diagnosed at 6 months of age with Diamond Blackfan Syndrome (or Anaemia). There’s about 200 of us worldwide, and about 20 in Canada. Apparently I’m strange cause I do make blood sometimes, but not often. So I have to get blood.

If anyone has questions to ask me about what it’s been like going through this, or other related questions feel free, that’s why I’m doing it!

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What are the symptoms, and how were you diagnosed?

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How do you know when you need a transfusion?

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Do you have to stalk small children and animals for their blood? Does sunlight also bother you?

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Do you have any problems with other systems in your body? If so, are they related or not?
Does this sort of thing greatly affect your life expectancy (if you get all of your transfusions on time)?
Is it genetic? Is there a chance it will affect your children or your ability to have children?

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If you receive transfusions, are you pretty much asymptomatic, or are there other associated problems?
Do you have to monitor your blood pressure closely?

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Are you male or female?

What do you mean you dont make blood? Do you mean you dont make “enough”? blood? (you must be making some blood)

What is your hematocrit percent ? Do you make white blood cells? What are your counts of rbc, neutrophils, basophil, lymphicytes, monocytes, eosinophils(they should be on your blood test)?

If you dont make white blood cells, how do you keep from getting sick and how do you fight infections?

What is your PH level?

Any problems with clotting, when you cut yourself?

Any problems taking aspirin or other medications? What medications are you prohibited from taking?

Why arent you making (enough) blood? Have they said you have a problem with bone marrow, kidney, liver, hormones, iron deficiency, ?

How does it affect your daily living, tiredness? etc.

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Can they retrofit you with a dipstick? where would you prefer this be installed?

Do they charge extra for the supreme? Can you get it in unleaded?

On a serious note:

How much do you typically get in one transfusion?
Can you tell when you’re low? Do you feel less energetic?

Is it fair to say that all (or a very high percentage) of the blood in your body is not your own? Do you have any idea what percentage of your body is “not your own”?

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Were you recieving blood tranfusions before there was regular testing of blood for HIV, Hep. C, and such?

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AvariceAngel: What are the symptoms, and how were you diagnosed?

**When I was a baby, my parents were taking me for a checkup cause I looked really pale. The docs ran some blood tests on me and noticed that my hemoglobin (red blood cell level) was really low, and they gave me an emergency transfusion. They rushed me to Toronto (I was in Winnipeg at the time, where I was born), and I was diagnosed there.

chrisk72**: How do you know when you need a transfusion?

**Well, I know that I usually need one about every month, so every four weeks I go to the hospital to get my blood checked. If my levels are fine, I go back every two weeks until I do need one.

liirogue**: Do you have any problems with other systems in your body? If so, are they related or not? Does this sort of thing greatly affect your life expectancy (if you get all of your transfusions on time)? Is it genetic? Is there a chance it will affect your children or your ability to have children?

**Yes, it seems my entire body is kinda screwed either because of this or the Hepatitis C I picked up from a tainted blood transfusion. So I have a battery of specialists that I see for different things. It shouldn’t affect my life expectancy assuming I get transfusions on time, except if my veins blow when I get old due to the repeated sticks. Genetic? No idea. I don’t think there’s enough research done about it. No idea on how it’ll affect my children, if any.

pravnik: **If you receive transfusions, are you pretty much asymptomatic, or are there other associated problems? Do you have to monitor your blood pressure closely?

**See above for related problems. No, my blood pressure is fine, kinda low sometimes when I’m at the hospital and they’re checking it as part of vitals during the day cause they make me sit down and relax. Tough life those days. :slight_smile:

Susanann**: Are you male or female? What do you mean you dont make blood? Do you mean you dont make “enough”? blood? (you must be making some blood) What is your hematocrit percent ? Do you make white blood cells? What are your counts of rbc, neutrophils, basophil, lymphicytes, monocytes, eosinophils(they should be on your blood test)? If you dont make white blood cells, how do you keep from getting sick and how do you fight infections? What is your PH level? Any problems with clotting, when you cut yourself? Any problems taking aspirin or other medications? What medications are you prohibited from taking? Why arent you making (enough) blood? Have they said you have a problem with bone marrow, kidney, liver, hormones, iron deficiency, ? How does it affect your daily living, tiredness? etc.

**Wow, lots of questions here, like to see inquisitive people. Fighting ignorance IS what we’re about, of course. :slight_smile: First off, I’m a guy. I actually don’t make red blood cells, my white cells are fine. And no, sometimes I don’t make ANY red blood cells. I don’t know hematocrit percent, sorry. Also don’t know my counts; the results of my blood tests stay in the hospital and I don’t see them. Don’t know PH level. No problems with clotting, thank Og. No problems with medications. Why don’t I make blood? I don’t think anyone knows; I sure don’t and I don’t think the docs do either. Yeah, I do notice that I’m pretty tired when I’m close to transfusion time, and when I was younger I got headaches and joint pain a lot when it was close.

Bill H.**: How much do you typically get in one transfusion? Can you tell when you’re low? Do you feel less energetic? Is it fair to say that all (or a very high percentage) of the blood in your body is not your own? Do you have any idea what percentage of your body is “not your own”?

**I get four units, maybe each unit equal to a pint? I’ve no idea. Wait, it could be about 300 mLs per unit. Something like that. I do make some of my own blood sometimes, but I’d guess a very large percentage is not mine, probably close to 90-100% at times.

Lynne_kilii**: Were you recieving blood tranfusions before there was regular testing of blood for HIV, Hep. C, and such?

Not sure about HIV, but from when I was born in 1983 to when Canada implemented testing in 1990 I was at risk for Hepatitis C, and I contracted it during that time. In fact, the non-testing of Hep C was a major issue in Canada, and was a major political issue for me, which I should get into sometime on the Boards.

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Is bone marrow transplant an option?

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How long does the actual transfusion take? What about getting time off for work, are they understanding?

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Ok, Lockz I said in the Blood Drive thread how terrified I am of needles and that I’ve never donated blood.

I just got off the phone with my local Red Cross and am going by either today or next Friday (they are only in on Fridays) to try and donate my pint.

I figure if you can go through a transfusion every 4 weeks or so then I can donate a pint in your honor. :slight_smile:

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What’s your blood type?

Have you ever had to wait because the bank’s blood supply was low?

Have you considered trying to get directed donors (i.e., family members /close friends who match) and using their blood, rather than the anonymous versions, so that you might feel safer about what you’re getting?

Do you worry about getting tainted blood, or do you figure that you’ve already drawn (Hep C) about the worst card likely to be in the deck?
Do you have to take any routine medications as a result of this condition?

Does this condition affect any of your activities/lifestyle choices? (e.g., playing sports, scuba diving, wilderness experiences, and so on)

What is the longest period of time you’ve gone without receiving a transfusion?

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Wow, very fascinating, I had never heard of that disorder.

It does sound like exactly the sort of disorder that would afflict a comic book persona, driving them to research a new invention/machine/drug to heal themselves of their affliction when something goes strangely awry in the lab giving them unexpected beneficial superpowers as a result.

So, have you chosen to be a crimefighter or a supervillain?

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I imagine a serious cut would be catastrophic for you. Do you have a MedAlert tag and some sort of plan in place should you run into a bleeding situation?

Interesting disorder. Have you met any of the other sufferers?

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What would happen to you if you didn’t get a transfusion?

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scr4: Is bone marrow transplant an option?

**The docs haven’t discussed the option with me; I presume either it’s not or bone marrow transplants are too expensive for a non-life-threatening illness.

ParentalAdvisory**: How long does the actual transfusion take? What about getting time off for work, are they understanding?

**They usually take around 6-8 hours, depending on how fast the blood is going and if I get an allergic reaction to the blood (they make me stay longer if I do). So far it’s mostly school that I’ve had to take off (I’m in university), but the full-time jobs I’ve had have been understanding so far.

Aries28**: **Thank you very much! It’s great to hear that I can get more blood into the supply from people I talk to!!

Pablito**: What’s your blood type? Have you ever had to wait because the bank’s blood supply was low? Have you considered trying to get directed donors (i.e., family members /close friends who match) and using their blood, rather than the anonymous versions, so that you might feel safer about what you’re getting? Do you worry about getting tainted blood, or do you figure that you’ve already drawn (Hep C) about the worst card likely to be in the deck? Do you have to take any routine medications as a result of this condition? Does this condition affect any of your activities/lifestyle choices? (e.g., playing sports, scuba diving, wilderness experiences, and so on) What is the longest period of time you’ve gone without receiving a transfusion?

I’m O+, not that good. It’d be nicer if I could receive more types of blood, but that’s life. I’ve had to wait once because of a low blood supply, a couple weeks wait I think. I don’t know if my family or friends could give; I just depend on Canadian Blood Services now; I trust in the quality of our blood supply now. I have to take an iron chelator to get rid of the excess iron in my body; so subcutaneous injections five times a week, eight hours per night (I wear it while sleeping). It has affected me a bit because of the reduced energy, but I played goalie in hockey for 12 years, so it didn’t affect me that much. I’ve once went a year without getting a transfusion when I was younger, although the doctors can’t figure out why.

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Kalhoun: I imagine a serious cut would be catastrophic for you. Do you have a MedAlert tag and some sort of plan in place should you run into a bleeding situation? Interesting disorder. Have you met any of the other sufferers?

**I suppose it would be very bad; but I’m guessing I’ve got enough blood in me to weather a semi-serious cut at most times. No, I don’t have a MedAlert tag, although was considering getting one for the Hep C. I’ve met two others.

liirogue**: What would happen to you if you didn’t get a transfusion?

You mean if I wasn’t to get another one? I’d get really run down and tired, and eventually there wouldn’t be enough blood in me to keep me alive.

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The red blood cells are what carry oxygen and co2, so you should be genrally tired, and breath more heavily from any exercise if your rbc is low. I can also see the headaches, but I cant think of anything at the moment why you would have joint pain from a low rbc, other than that every organ including joints, would have less nutrients provided to them.