Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hello everyone,
It's been awhile since I've posted on this section of DS. I hope no one has been offended...I've been really sick with Fibro and joint pain,etc...I've been focusing on that area.
I've been a very 'good girl' and I've adjusted my diet with each new illness i've been diagnosed with. I've forced myself to carry on,work,exercise,clean,take care of my fam,etc. I've avoided the 'no no's' for the most part and any I have cheated w/ have been very sparingly....But yet I'm having issues w/ my phlebs:(
I've been going now since I stared DS once a month to Phle and each time I go it gets harder and harder. Each time I go, someone has something new I 'need to do' and with every try-a fail:( I also feel I'm being blamed but I remind myself of how I'd feel if I were them and they were me...
Last session it took five tries with the needle that ended in a dry run. In the end after almost four hrs we were only able to get 250ml. We started out with me being able to give a full bag w/o all these other problems. After my first phle and with each one,it just keeps getting harder to get my vein and give my blood. I was first given IV fluids after to 'replenish' now I'm given half a bag before to try and get my veins to give. I caught my phlebotomist rolling her eyes at another over this and I called her on it. I told her it was HER idea to begin with and that I was in for WHATEVER she needed/wanted me to do...The eye rolling was because one asked the other why I was being given half bag when that equaled drinking one gatorade and why didn't I just do that? I said outloud,"Well,because YOU said the IV was going STRAIGHT to my veins where me drinking it from my MOUTH just made me pee faster..." I'm damned if I do,damned if I don't...and I KNOW they hate it when I come in! To start I had a 'good vein' and now it won't work anymore and with each new vein they find and feel will be 'the one for next time',it fails the next time:(
My dr refuses to give me a port because he says my disease 'isn't severe enough' and to a degree I agree with him. I'm 'so close yet so far away' from getting to my magic safe number...I am at 15 hemo,but it seems like with each visit-the way they go,we won't get there for another yr! At this point we are only getting 200-300ml at each visit. This is after they probe me for an hr (and I do feel they are the best team of phlebotomists...)and if my vein gives or doesn't clot right up. Then I pump my fist w/ a blood pressure cuff on me for an hr and half to give this blood! This is very painful espec since I have Fibro:'( I AM IN HELL. So then I wonder if my Fibro and thick blood are connected???I'm sure both cause the pain thru my body.
Each person on my team has told me to do different things,drink different things,etc and I do everything everyone tells me but it seems like a new prob each time. I'm taking 900mg Magnesium as well. I have also been advised NOT to take aspirin because of the other meds i'm on. First I was told drink plain water cos that's the best it can get....then no,that is the worst (by my Dr) to drink gatorade. Well,the prob w/ that is it's LOADED with sodium and with my Meniere's I'm not supposed to drink it...but I guess I will for phelbs? Then I was told to drink SmartWater and then anything w/electrolites since it 'swells/expands the blood in the veins'. My other dilema is I have to take a diuretic for Meniere's...and so now I am advised to skip my meds for that too during phelbs. Im not sure how my Ear Dr will feel about this...It's hard when one Dr tells you one thing and the other is shaking his head.
I have also gotten on Detrol LA so that I can drink and hold more fluid for the phle's. I was stopping off three x's before I ever got to my phle visit to pee yet I'm being told I'm not drinking enough:( I feel like nothing is ever enough since I am struggling with EACH and EVERY disease I have. So the Detrol and the diuretic dries me up (now I am going to ask about a pill that supposedly helps my make saliva PILLS PILLS PILLS)...and my blood is already thick to begin with...and my veins are crap. I've asked God Why not at least give me good veins if he's gonna allow me to have all these other issues to deal with? It's hard not being resentful:(
I'm trying to best to deal with everything...it hasn't been easy and has caused a lot of depression. I have also just recently lost my job and now there will be the stress of making ends meet:( I do feel,however,that I NEEDED to be jobless to catch up with all my illnesses and get better.
So what are your tricks to a successful phle?
Thank you for listening...
It's been awhile since I've posted on this section of DS. I hope no one has been offended...I've been really sick with Fibro and joint pain,etc...I've been focusing on that area.
I've been a very 'good girl' and I've adjusted my diet with each new illness i've been diagnosed with. I've forced myself to carry on,work,exercise,clean,take care of my fam,etc. I've avoided the 'no no's' for the most part and any I have cheated w/ have been very sparingly....But yet I'm having issues w/ my phlebs:(
I've been going now since I stared DS once a month to Phle and each time I go it gets harder and harder. Each time I go, someone has something new I 'need to do' and with every try-a fail:( I also feel I'm being blamed but I remind myself of how I'd feel if I were them and they were me...
Last session it took five tries with the needle that ended in a dry run. In the end after almost four hrs we were only able to get 250ml. We started out with me being able to give a full bag w/o all these other problems. After my first phle and with each one,it just keeps getting harder to get my vein and give my blood. I was first given IV fluids after to 'replenish' now I'm given half a bag before to try and get my veins to give. I caught my phlebotomist rolling her eyes at another over this and I called her on it. I told her it was HER idea to begin with and that I was in for WHATEVER she needed/wanted me to do...The eye rolling was because one asked the other why I was being given half bag when that equaled drinking one gatorade and why didn't I just do that? I said outloud,"Well,because YOU said the IV was going STRAIGHT to my veins where me drinking it from my MOUTH just made me pee faster..." I'm damned if I do,damned if I don't...and I KNOW they hate it when I come in! To start I had a 'good vein' and now it won't work anymore and with each new vein they find and feel will be 'the one for next time',it fails the next time:(
My dr refuses to give me a port because he says my disease 'isn't severe enough' and to a degree I agree with him. I'm 'so close yet so far away' from getting to my magic safe number...I am at 15 hemo,but it seems like with each visit-the way they go,we won't get there for another yr! At this point we are only getting 200-300ml at each visit. This is after they probe me for an hr (and I do feel they are the best team of phlebotomists...)and if my vein gives or doesn't clot right up. Then I pump my fist w/ a blood pressure cuff on me for an hr and half to give this blood! This is very painful espec since I have Fibro:'( I AM IN HELL. So then I wonder if my Fibro and thick blood are connected???I'm sure both cause the pain thru my body.
Each person on my team has told me to do different things,drink different things,etc and I do everything everyone tells me but it seems like a new prob each time. I'm taking 900mg Magnesium as well. I have also been advised NOT to take aspirin because of the other meds i'm on. First I was told drink plain water cos that's the best it can get....then no,that is the worst (by my Dr) to drink gatorade. Well,the prob w/ that is it's LOADED with sodium and with my Meniere's I'm not supposed to drink it...but I guess I will for phelbs? Then I was told to drink SmartWater and then anything w/electrolites since it 'swells/expands the blood in the veins'. My other dilema is I have to take a diuretic for Meniere's...and so now I am advised to skip my meds for that too during phelbs. Im not sure how my Ear Dr will feel about this...It's hard when one Dr tells you one thing and the other is shaking his head.
I have also gotten on Detrol LA so that I can drink and hold more fluid for the phle's. I was stopping off three x's before I ever got to my phle visit to pee yet I'm being told I'm not drinking enough:( I feel like nothing is ever enough since I am struggling with EACH and EVERY disease I have. So the Detrol and the diuretic dries me up (now I am going to ask about a pill that supposedly helps my make saliva PILLS PILLS PILLS)...and my blood is already thick to begin with...and my veins are crap. I've asked God Why not at least give me good veins if he's gonna allow me to have all these other issues to deal with? It's hard not being resentful:(
I'm trying to best to deal with everything...it hasn't been easy and has caused a lot of depression. I have also just recently lost my job and now there will be the stress of making ends meet:( I do feel,however,that I NEEDED to be jobless to catch up with all my illnesses and get better.
So what are your tricks to a successful phle?
Thank you for listening...
being unemployed is depressing enough, but i think you are right that sometimes we need to focus on us as apposed to work...
i have meneirs too.. i didn't know there was meds for it...what do the meds do for it?? speak up i can't hear over this blasted ringing ....... do take care and hope things get better for you soon... dc
When allergens are high,I can feel the nausea and dizzy peek thru. My Dr says depending on allergens and how much fluid builds in your ears will depend on the ringing:how loud,etc. But he says it will NEVER go away:( I was advised to be tested for what all i'm allergic to and get allergy shots to also help...but my insurance doesn't want to pay a good portion of it...so I haven't had it done.
I'm also on a diet. Actually several diets...I do cheat...but I try not to. I'm supposed to keep my salt down and for the most part,have been pretty good at it. You will be surprised how much sodium is in EVERYTHING. Grocery shopping has become a real bummer since I find myself having to check labels so much with everything...
I do try to hydrate as much as possible,but apparently not enough. My Dr SPECIFICALLY said Gatorade. Even tho i've read on posts here it's bad...that's what he said. My phlebotomist said Smart Water...they are telling me the electrolites are what's helpful. So i'm going to give that a go next time.
WOW!!!!!! You're really having it rough! and I do understanding the frustration you are dealing with!!
You need a caring ear AND you need a shoulder to cry on! Any of us are here to support you. We will listen, suggest, search, research, cheer & congratulate each other. And I'll include you in my prayers, too.
4 hours 5 sticks?? Whewwww! Makes me wanna puke! (sorry) It's hard to imagine having a blood pressure cuff on for more than a few minutes! I'd think you would be numb AND sore!
I hope you go there with EMLA cream on both arms! Small needles are kinder to our veins but larger needles are better for "thick" blood and faster flows. My nurse uses a 20 gauge needle. She said it starts out a little slow but after the first minute or 2, it flows faster. I'm usually flowing for about 15-20 minutes. Ports aren't normally used for phlebs b/c our blood, (full of heavy iron), tends to clog it.
On the day of your phleb, could you take the diuretic AFTER the phleb? That way, you WILL be full of fluid and may have juicy veins. Caffeine is a dehydration on the body (I know... and I drink lots of diet coke).
I searched for some natural sources of blood thinners (food/spices) but you need to check with a Dr 1st b/c these could interfere with medications.
I didn't know this until I was searching for alternatives or any kind of help to offer you (yeah, I know... just one more suggestion & you could throw something).
I also read another thing I didn't know. Vit K and/or foods with vit K should be used with caution b/c it is a coagulent. Good thing I'm not a big salad eater b/c leafy greens would counteract the baby aspirin I'm taking to thin mine.
In addition to garlic & onions, here is a link with some foods/spices which might help to thin your blood, if your doc OK's it.
http://www.dailystrength.org/groups/curing-our-symptoms/discussions/messages/8741661
Let us know how you are doing AND dealing with it all.....
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so sorry, I haven't been on for a few days. Yes, EMLA is a script and it is Lidocaine and Prilocaine Cream, 2.5%/2.5%
Good Luck with those future sticks!!!
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