Aa
My hgb results
Well, you'd think the nurse would have called to let me know, seeing as my hgb is now 9.2, but that's beside the point.
I called for my CBC results, and she said, "Oh, your hemo is a little low." I asked for the exact figure (why is this so difficult for her?) and when she told me 9.2 I agreed it is low, and asked what we are going to to about it.
She asked if I reduced the riba, I told her no. She again tried to talk me into that saying "it will make you feel better immediately" (???) I told her that as much as I want to feel better, I would rather that dose-reduce be our last option. She told me to just try it, and I said OK, but can she have the doctor call me back, because I would like to discuss it with him first.
All of a sudden, she said that we could try using Procrit, and that she will call my insurance company and get it approved, and then she will call me in the morning. Meantime, I should reduce the riba anyway until the Procrit gets here.
Hmmmm...wonder what caused the quick turnaround?
I called for my CBC results, and she said, "Oh, your hemo is a little low." I asked for the exact figure (why is this so difficult for her?) and when she told me 9.2 I agreed it is low, and asked what we are going to to about it.
She asked if I reduced the riba, I told her no. She again tried to talk me into that saying "it will make you feel better immediately" (???) I told her that as much as I want to feel better, I would rather that dose-reduce be our last option. She told me to just try it, and I said OK, but can she have the doctor call me back, because I would like to discuss it with him first.
All of a sudden, she said that we could try using Procrit, and that she will call my insurance company and get it approved, and then she will call me in the morning. Meantime, I should reduce the riba anyway until the Procrit gets here.
Hmmmm...wonder what caused the quick turnaround?
o2 saturation using the finger monitor is an important tool used to detect oxygen content in the blood. Unfortuatly it does not tell the entire story if the patient is still short of breath. I have found that many health care profesionals do not understand this fully. If your hr is up and you are experiencing sob you may still be low in o2 content even though the sat is in the 90's.
The formula for o2 content is:
1.36 x hbg + .003 x PaO2
The normal is 16-22 mlO2/100ml
Since you proabably don't have a Pao2 ( since it is a blood test) you can put something normal in (70-100) and still see how hbg affects your sob even though the sat is good' This is why anemia can cause sob in spite of the fact the sat is ok.
The normal PaO2 is based on age and somewhat on barametric pressure where you live. The higher the altitude the lower Pao2 is acceptable. This is why persons who live in higher altitudes can have higher HBGs in general. It is a compensatory thing.
Hope this makes since. It's been a long time since I was in school.
The formula for o2 content is:
1.36 x hbg + .003 x PaO2
The normal is 16-22 mlO2/100ml
Since you proabably don't have a Pao2 ( since it is a blood test) you can put something normal in (70-100) and still see how hbg affects your sob even though the sat is good' This is why anemia can cause sob in spite of the fact the sat is ok.
The normal PaO2 is based on age and somewhat on barametric pressure where you live. The higher the altitude the lower Pao2 is acceptable. This is why persons who live in higher altitudes can have higher HBGs in general. It is a compensatory thing.
Hope this makes since. It's been a long time since I was in school.
Do they weight base your riba? I know we talked before re: your weight and the amount of riba. Isn't 800 appropriate for your size. Is it different for your genotype?
My last lab was 1/2/07 amd I'm sure my hgb has dropped since then becauce I feel worse everyday. Somthing is making my heart rate increas. Maybe the lack of oxygen to the organs due to low hbg. My heartrate is 107, never that high for me. Osaturation level was 96%. Good on level if it's over 90, but still a drop for me. Especially since I quit smoking:)
Janice
My last lab was 1/2/07 amd I'm sure my hgb has dropped since then becauce I feel worse everyday. Somthing is making my heart rate increas. Maybe the lack of oxygen to the organs due to low hbg. My heartrate is 107, never that high for me. Osaturation level was 96%. Good on level if it's over 90, but still a drop for me. Especially since I quit smoking:)
Janice
Besides the absolute number, a lot of this depends on how you're tolerating the lower hemoglobin. Hopefully, your "surprise" means that you are feeling relatively well. In any event, glad they took quick action with the Procrit. You might want to bug them to give you a shot right away from any office/hosptial stores until your rx is filled. That is, of course, if they have some around which is sometimes the case.
All the best,
-- Jim
All the best,
-- Jim
9.2 is "a little low", yea and the Empire State Building is kinda tall, the Pacific has a bit of water, and it takes a few days to reach the moon.
One can certainly speculate the reason for the sudden change and why it occurred when you demanded to speak with your doctor first. However, the very fact that it happened would most certainly raise my suspicions as well and prompt me to talk with my doctor ASAP.
As low as your Hgb is and continueing to drop, I would want to be monitoring it closely and especially so when using the Procrit until such time that it appears to stabilize.
Also, given the unpredictability of SVR with this tx, I would certainly not want to reduce my chances of attaining it because of incompetent medical care. It would be a shame to miss it because a nurse is either trying to play doctor or not implementing the doctors request in a timely fashion.
I recall how frustrated I was with my first doc and especially with a nurse who one week told me my lab results were not in and then the following week said the results were mailed two weeks ago denying that she said they weren't available a week earlier.
There have been other instances where I've encountered nurses who fail to consult with the doctor or relay messages to them. To them I may be just chart number xyz who they have to deal with on their 9-5, but it means a bit more to me and I have to live with myself 24/7/365.
One can certainly speculate the reason for the sudden change and why it occurred when you demanded to speak with your doctor first. However, the very fact that it happened would most certainly raise my suspicions as well and prompt me to talk with my doctor ASAP.
As low as your Hgb is and continueing to drop, I would want to be monitoring it closely and especially so when using the Procrit until such time that it appears to stabilize.
Also, given the unpredictability of SVR with this tx, I would certainly not want to reduce my chances of attaining it because of incompetent medical care. It would be a shame to miss it because a nurse is either trying to play doctor or not implementing the doctors request in a timely fashion.
I recall how frustrated I was with my first doc and especially with a nurse who one week told me my lab results were not in and then the following week said the results were mailed two weeks ago denying that she said they weren't available a week earlier.
There have been other instances where I've encountered nurses who fail to consult with the doctor or relay messages to them. To them I may be just chart number xyz who they have to deal with on their 9-5, but it means a bit more to me and I have to live with myself 24/7/365.
None of us are really sure WHAT the exact science is you know but one thing the leading doctors ALL agree on is NOT to reduce unless absolutely positvely the last resort. It CAN greatly hurt your chances.
It's hard not having a magic formula that we can go by.
But unfortunately while no one can guaranteee it WILL hurt - nobody on earth can guarantee it WONT. So in my logic...it's not worth it.
Treatment is too hard to do - we don't want LESSER odds.
Procrit/Epogen will work like magic but it will take TIME.
I don't know if you ever saw our great friend Mr. Beagle Bailey but his hemo went down to 6 and he hung in and NEVER REDUCED. And it was DREADFULLY low for a LONG TIME.
UGH. Good luck!
It's hard not having a magic formula that we can go by.
But unfortunately while no one can guaranteee it WILL hurt - nobody on earth can guarantee it WONT. So in my logic...it's not worth it.
Treatment is too hard to do - we don't want LESSER odds.
Procrit/Epogen will work like magic but it will take TIME.
I don't know if you ever saw our great friend Mr. Beagle Bailey but his hemo went down to 6 and he hung in and NEVER REDUCED. And it was DREADFULLY low for a LONG TIME.
UGH. Good luck!
Jim, I'm not surprised that the number is low, I'm "surprised" that the nurse changed her tune so quickly when I asked for the doctor. I feel so crummy I could have guessed the number on the nose. Believe me, I don't want to add another drug to the arsenal, but I would like to walk to the bathroom and back without my heart pounding. Good idea to check and see if they have some so that I can get started. I can always replace it when mine gets here.
I have no idea how Beagle did it at 6!! My hat goes off to him!
GrandOak, my daughter told me the same thing, that I need to speak with the doctor anyway and not wait until my next appointment. You are both right, he needs to know if a nurse is making treatment decisions without consulting him. When it happened to you, did you tell the doctor? And what did he/she say?
I'm still debating with myself about reducing the riba to 800. I really don't want to repeat this treatment, but on the other hand, I have a (huge)job interview on Wednesday, and I'd rather not pass out in the middle of it. I don't think anything will work that quickly though. (no matter how "immediately" the nurse says it will work)
Thanks to all!
Why oh why didn't I listen to you guys and start pushing for the Procrit last week?
I have no idea how Beagle did it at 6!! My hat goes off to him!
GrandOak, my daughter told me the same thing, that I need to speak with the doctor anyway and not wait until my next appointment. You are both right, he needs to know if a nurse is making treatment decisions without consulting him. When it happened to you, did you tell the doctor? And what did he/she say?
I'm still debating with myself about reducing the riba to 800. I really don't want to repeat this treatment, but on the other hand, I have a (huge)job interview on Wednesday, and I'd rather not pass out in the middle of it. I don't think anything will work that quickly though. (no matter how "immediately" the nurse says it will work)
Thanks to all!
Why oh why didn't I listen to you guys and start pushing for the Procrit last week?
Beagle has another condition (Thallassemia sp?) in which he started out low in hgb. So his drop, although to spectacular depths, was sort of tempered by a proclivity to get there. In addition, Beagle has a least one (and I think a couple) of transfusions which seems to be THE fast turnaround from the depths of anemia. Good luck in the interview, bring notes with you about what you want to highlight about yourself and your qualifications.
Hey,,,glad you are getting procrit and noooooo,,,,no riba reducing. lol Even if you reduced riba,,,I honestly don't think it would raise your hgb that quick and next few days,,,,you should be doing the procrit! Run the course and give it your all,,,You only want to do this one time! Good Luck!
Yes, 800 is probably appropriate enough for my size now that all my clothes are too big, that's why I'm debating with myself about going ahead and reducing. I just never want to be a relapser second-guessing that decision. I wish there were more absolutes about the treatment of this diease.
I know some will take issue with this but I don't think 9.2 is low enough to upset you too much. I think starting the procrit is great. My HBG was in the 9 range for about 60 weeks on procrit at the end. I think it is more the degree of the drop more than the number itself. In other words if it dropped from a high number to a low number ( like 12 to 9 ) in a short time I think that is significant. If is drifting down slowly, maybe not. Still time to probaly ask about procrit, My insurance co would not approve it until it hit 8. Everyones situation is differnt. I felt sluggish when it was low but tolerated it pretty well . Stay on top of the labs like you are so it doesn't go any lower.
Does any one know about folic acid? Is it the same as iron? When My hbg went to 6, I was transfused and started on folic acid. Now I learn that iron should not be taken
Does any one know about folic acid? Is it the same as iron? When My hbg went to 6, I was transfused and started on folic acid. Now I learn that iron should not be taken
If I remember correctly, I think that Folic Acid is one of the B vitamins. Maybe I should try that, especially if my insurance turns out to be anything like yours! I can't believe they wouldn't pay for it until you hit 8. And then look what happened, it dipped all the way to 6 and they probably paid more for your transfusion. Insurance companies can be so short-sighted.
I started treatment 14 weeks ago with an hgb of 14. So I don't know where that puts me on the "falling fast" scale, but right now my heart pounds from doing normal activities, I get dizzy when I stand up too long, and I am always out of breath. So, you're right, a number is just subjective, but for my metabolism, it seems that 9 is too low, especially since I am putting a lot of energy into running around on job interviews and taking care of a 2 year old.
I started treatment 14 weeks ago with an hgb of 14. So I don't know where that puts me on the "falling fast" scale, but right now my heart pounds from doing normal activities, I get dizzy when I stand up too long, and I am always out of breath. So, you're right, a number is just subjective, but for my metabolism, it seems that 9 is too low, especially since I am putting a lot of energy into running around on job interviews and taking care of a 2 year old.
Just my two cents, your drop sounds pretty normal and your symptoms also,one thing to keep in mind is your at about the period on Tx when often Hb starts to recover or at least stabilise.I agree that keeping the Riba dose up if possible is ideal but at 14 weeks a drop for a week or so is not the end of the world,the concentration of Riba in your body by now will be fairly high.As long as they monitor you closely you should be fine.I won't say anything about the rescue drugs because I know nothing. :)
I talked to the doctor, but that was the same doctor who cut my Riba without trying Procrit and which is possibly the reason why tx did not work for me. I say this because I initially had a VL drop from 72 million to 2.2 million within the same 4 week time period that my Hgb dropped from 13.5 to 10.5.
This was all at the outset of tx for me and long before I learned of our local HCV support group and this forum. This episode with the nurse, coupled with me answer questions from the doc on my medications, was the reason I began looking for another doctor and found out about rescue meds like Procrit.
Unfortunately, I had already cut my Riba, Hgb continued to drop, and first doc admitted she was in over her head (me answering her questions probably made her uncomfortable, you think).
By the time I switched docs, got on Procrit and stabilized my Hgb, my VL drop started leveling out and I spent the next 4 months trying to increase my Riba back to full dosage with corresponding increases of Procrit to try and keep my Hgb up enough to be able to function and watched my VL start to increase again. They did give me 12 weeks after reaching full Riba dosage (and 100,000 U SQ of Procrit each week) before pulling me from tx this past November as a nonresponder because VL continued to increase (4.4 million when pulled).
So, you can see why I'm so adamant about proper Riba dosage.
I've also seen the good, bad, unknowledgable, and completely ignorant in the medical profession when it comes to nasty diseases such as this insidious one. One pediatrician came right out and told me that it was unnecessary to worry about my children being exposed to small amounts of my blood because it takes alot more than that to become infected. Can you believe it? I restrained myself from asking him why it is stigmatized as being a IVDU illness then since not alot of blood is exchanged in shared needle use.
My experiences has greatly enlightened me to the fact that we often need to become, or find someone else who can be, our own advocates when it comes to highly infectious contagious diseases. I believe HCV is one of the nastier ones and have a lot of fear and respect for it. I would not be at all surprised to learn that it is the result of either an experiement gone amuck or some mutation from other experiements Man has engauged in without realizing the full ramifications of their actions (such as above ground atomic testing on service personal). I say this because of how nasty and resilient I've found it to be, it is hard to imagine that it's been around for centuries given the epidemic porportions at which we see today and even the pros are now beginning to murmur that the established numbers may be grossly underestimated.
Enough of the soapbox though. I hope I've impressed upon you the importance to treat this virus with more respect than it seems your doctors and nurse have done as it is very resilient and tough enough to treat by itself that you don't want to take chances of messing your tx up when it is your health and well being are at stake, not the nurses or doctors. Personally, given the bit you told us about the nurse, I would be skeptical about a doctor who would continue to put up with it if they know what is going on. HCV is not the cold or flu and should not be treated with such a cavalier attitude as it appears your nurse is doing.
This was all at the outset of tx for me and long before I learned of our local HCV support group and this forum. This episode with the nurse, coupled with me answer questions from the doc on my medications, was the reason I began looking for another doctor and found out about rescue meds like Procrit.
Unfortunately, I had already cut my Riba, Hgb continued to drop, and first doc admitted she was in over her head (me answering her questions probably made her uncomfortable, you think).
By the time I switched docs, got on Procrit and stabilized my Hgb, my VL drop started leveling out and I spent the next 4 months trying to increase my Riba back to full dosage with corresponding increases of Procrit to try and keep my Hgb up enough to be able to function and watched my VL start to increase again. They did give me 12 weeks after reaching full Riba dosage (and 100,000 U SQ of Procrit each week) before pulling me from tx this past November as a nonresponder because VL continued to increase (4.4 million when pulled).
So, you can see why I'm so adamant about proper Riba dosage.
I've also seen the good, bad, unknowledgable, and completely ignorant in the medical profession when it comes to nasty diseases such as this insidious one. One pediatrician came right out and told me that it was unnecessary to worry about my children being exposed to small amounts of my blood because it takes alot more than that to become infected. Can you believe it? I restrained myself from asking him why it is stigmatized as being a IVDU illness then since not alot of blood is exchanged in shared needle use.
My experiences has greatly enlightened me to the fact that we often need to become, or find someone else who can be, our own advocates when it comes to highly infectious contagious diseases. I believe HCV is one of the nastier ones and have a lot of fear and respect for it. I would not be at all surprised to learn that it is the result of either an experiement gone amuck or some mutation from other experiements Man has engauged in without realizing the full ramifications of their actions (such as above ground atomic testing on service personal). I say this because of how nasty and resilient I've found it to be, it is hard to imagine that it's been around for centuries given the epidemic porportions at which we see today and even the pros are now beginning to murmur that the established numbers may be grossly underestimated.
Enough of the soapbox though. I hope I've impressed upon you the importance to treat this virus with more respect than it seems your doctors and nurse have done as it is very resilient and tough enough to treat by itself that you don't want to take chances of messing your tx up when it is your health and well being are at stake, not the nurses or doctors. Personally, given the bit you told us about the nurse, I would be skeptical about a doctor who would continue to put up with it if they know what is going on. HCV is not the cold or flu and should not be treated with such a cavalier attitude as it appears your nurse is doing.
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