I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Epoman on August 27, 2006, 12:03:51 AM
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My Ferritin level is 1,700 ng/ml (Normal level for a male: 12-300 ng/ml) which is many times higher than normal. When the Ferritin level is so high is could mean one of the following:
Higher-than-normal levels may indicate:
Note: Any inflammatory disorder can raise the ferritin level.
alcoholic liver disease
hemochromatosis
hemolytic anemia
Hodgkin's lymphoma
megaloblastic anemia
I do not drink alcohol. My Kaiser doc's don't seem to worry about it and they just say we will check the numbers next month. I have never noticed that it was that high, I thought that is was mentioned to me before that is was elevated. I never paid attention to it because I never thought it was something I would have to know what the number meant because of dialysis. Does anyone here know what their ferritin level is?
AND to top it all of my BP (Blood Pressure has been lower than normal the last couple of months like 100/80 or 90/70 and I stopped ALL my BP meds several months ago. I am worried that I have some kind of heart problem like CHF. I even try to only remove less than I drink and go way above my dry-weight and it's no change. I know that BP is not that low but for me it is since I used to be in the 160-190/90-100 range AND my BP before used to be out of control when I had my Thyroid and Parathyroids removed. It is a BATTLE keeping the right dosage.
Ok RANT TIME:
I have just been feeling tired and sick the last few days and it compounds the fact that I am a worrier. I worry about everything. I have so much on my plate to handle, I have my son who is starting school in a couple of weeks and I am VERY active in his school so I am not looking forward to that, I have this site to run plus 2 others, plus 1 more on the way (surprise), I have to worry about my old fistula still working, I have 2 broken hips, can't walk, I have 1 vocal cord and it's hard to speak, so EVERY MOTHER p*ckER I speak to says "what?" or "huh?" I now have to worry about possible heart failure and liver damage, I still have to be a dad, husband, brother, son. Then I have asshole spammers trying to spam this site and my members, I then get some emails that I send out via admin@ihatedialysis.com to members bounce back to me because my Internet provider thinks I am a SPAMMER they think I am spammer, yet every day I get a dozen emails from real spammers for dick enlargements and online drug stores located in Pakistan. I really need a vacation from my LIFE and sometimes I wish I were dead, I honestly do. I am just so tired of living and fighting to always have something new to worry about. I try to not post my problems to you guys but a close friend talked me into it (thanks Susie). I try to maintain a strong front for you guys being the Admin but sometimes it just gets to be to much. I put in literally 8+ hours a day working on these sites for my members and I enjoy it I really do, but it really hurts when I get an email from a member who just joins so they can point out my spelling mistakes and call me an asshole. All I have ever asked is that my members TRY their best when it comes to spelling. There is A LOT that goes on behind the scenes at IHD.com that you have no idea about. Maybe I just try to hard to make this a good community by always adding new features to keep this site fresh for you guys, maybe I just need a break, but there is a lot involved in running the biggest dialysis message board on the 'net. Don't worry the site will always be up even after my death as long as we have financial supporters remember all of the OTHER big sites have corporate sponors we do not. I am just ranting, and If you will notice I have not done that in a while.
- Epoman
P.S. So if anyone can look up or find out their Ferritin level I would appreciate it.
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Hi Epoman...I just read your rant. I honestly wish i could tell you something to just get your mind off of it. Truthfully, that was very hard to read.
Since i have both hips replaced already, have they ever talked to you about replacing yours? I had to have them replaced because of the steroids from transplant.
My labs are coming up in a week, I'll check my ferritin level.
If there is anything i can tell you, just please be strong for your son. You sound like one hell of a dad. Your son will see your strength and hopefully you can feed off of each other.
Also, if you want to see me, I just posted a pic in the family album.
Take it easy
john
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Hi Epoman,
It`s ok to rant you know, after all, you`re not Superman and it sounds to me like you`re doing a lot more than a more able-bodied person would do in his/her life. But I think we all feed off each other`s strength in this site and you will have up and down days. I have down days as well when I just want to shut myself off from the world. But I don`t cos I`m strong and a fighter and you have to be strong and show your boy you`re a fighter too!
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My ferritin level last test was 497.
Ferritin is measured in direct correlation to total iron stores. I am not sure of the correlation of how or if dialysis patients efficiently store and use iron but there may be a problem in that area even with high ferritin levels You might check what the relation of ferritin is to your total iron, iron binding and iron saturation levels as maybe this might give some more insight.
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Sometimes words aren't enough so....
here's a huge
(((HUG))) from across the pond.
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My last level was 140. You sound like your feeling exactly the way I am right now, as Ive just explained in another thread. I would check your iron levels too, are you on any iron medication? I think its bullshit that they have said they will just check it next time? WTF? Do you know when they will check it again? I don't really know much about ferritin so all I can really say is take it easy and if they don't do something soon then Id be kicking up a big stink!
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I don't know shit about ferritin levels but I do know that you are just as human as the rest of us and you have the right to rant as much as anybody, (not to mention this is your site) and it will become your legacy eventually. Your gift to all of us was this site and You should be able to depend on us same as we do you.
Anytime u can contact me and I would be here for you.
My turn ..lol..
Lately I've developed a staph infection in my leg and we are trying to save it but it was a shock when the Doctor said we might have to amputate it if Meds don't work. I'm not scared of losing my leg, but I am shocked because besides the pain and tiredness I don't feel all that sick. Except for the normal( whatever normal is) lol. Not sure I'm on the right thread for this conversation so I'll end here, but try to take some time for relaxation Epoman we all need that once in awhile.
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good idea Python...
BIG HUG for Epoman and Sluff
and Epoman.... you are amazing!
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Oh man you guys, you are making ME cry. But it is a good cry. To see how we all come together when one of us really needs the support, we are freaken awesome arent we?? ;) You bet we are. Last night, when i first learned of Epoman's dilemma i told him his secret was safe with me :-X but after saying that, i knew i couldnt keep it a secret from the rest of you, i practically had to beg him to come and let you all know, i am so glad he came out and said something. Again, this is more than just a website people, this is our "support group" Let's all get together and do what we can to help keep this rolling as smooth as possible. ::) I LOVE YOU GUYS!!!
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Epoman, I read the posts often, but seldom feel that I can add anything, this time though I want to ask you not to be so hard on yourself, do you think you are superman. We all have lost a lot through this process, You maybe more than me because of your age and the fact you have a young family.
I truly feel for your sadness and anger you have for this cruel disease process. I wish I could do something to help. The one thing I do know is that lab reports are not always correct. Last month my cholesterol was 107, not bad hu, the kicker there is my cholesterol has been very high for a long time, I asked Doc could this be wrong? answer was sure lets wait till next month lo and behold , this month there you go back up to 270.
My ferritin is 545, not like yours but is elevated, transferrin 193 slightly low 200-360, % saturation 21 normal 9-71.
My neph says labs are good, I have to be able to trust that he knows what he is doing, or find another.
((((((HUGS))))))) carole
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Oh Epoman, my prayers and thoughts are with you.
I wish there was something more we can do for you.
Life is so overwhelming sometimes.
At those times I can only deal with a day at a time and trust God.
You are such an encouragement and inspiration to all of us.
What you have accomplished is truly amazing.
I hope you can find some time to relax and do what you enjoy doing the most.
You have a wonderful wife, a terrific son, a brilliant mind, determination and all of
US pulling for you. Let us know if there is anything we can do to help you.
We appreciate you!
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My last Ferritin level was 193 which for my lab is a little high. Labs do make mistakes.
Glad you got the rant off your chest. Sometimes it helps just to talk things out a bit. You can not be Superman all the time. Give yourself a break and try to relax and take a mini-vacation.
((((Hugs)))) Ginger
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Sorry you are under so much stress. I really hope you won't hesitate to rant here when you need it, you are only human and you do have a lot on your plate. Maybe you do need a break from everything. Is it possible to take a weekend trip with the family, somewhere away from the computer and your other obligations?
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Hey Epoman. You are doing amazing things here with your sites. I know I have found a place where I can vent and rant and talk to people who are in the same place I am. I know running these sites is a huge responsibility and sometimes we members come across as crass or rude to you. Just remember we are here for you, too. When it all gets overwhelming take some time for you. Enjoy something you alone like. Be well. Here is a hug.
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Epoman, I am finding this post very difficult to write. I am amazed at what you have been going through and honestly wish there was something I could do. All I can do is send my caring thoughts your way, along with my prayers. I am glad that you realized that it was time to open up to us. You might not be a superman, but you are way up there! I know you will come through. You have to!
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Hey... hope you feel better soon.. i am going to see my doctor today. I will ask him what he thinks .
Take Care
Amanda
xx
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Epoman! Get a grip! You KNOW labs are wrong sometimes. I agree with the doc (ewww did I say that) wait until the next lab. If it is high for two or three months in a row, then you can "worry." Crap! You don't go and jerk out your parathyroids just because of one high PTH!
You are not feeling well this week. Maybe you have a bug of some kind. Get your rest! You will feel better if you get some sleep instead of working on all those sites. Keep your prioritits straight. 1. marriage 2. kid 3. IHD.C 4. other stuff ;D
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Thank you everyone for the kind words and I really do appreciate your comments and support. It means a lot. Thank you. I just hope everything turns out ok, because I have gone through so much I don't think I can handle much more. Right now this site and maintaining it for you guys is a top priority in my life right now, because I know when I first started on dialysis 13 years ago I wish I had a site like this to come to.
I just hope my BP rises and my Ferritin level decreases, all I NEED is 9 more years on this damn earth to finish the most important job in my life and that job is being a father to my son whom I love more than anything. I just hope when he is older and looks back and reads this site it will make him feel closer to me if something were to happen to me before he becomes a man. I don't fear death, I fear my son crying because he misses me. :-[
Thanks again to you all.
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Hey Epoman. Sorry to hear about your high iron levels. I am aware of what that can do to someone. High iron can lead to or accelerate the onset of osteoporosis.
But don't think your not allowed to rant in your own forums. I know what it like to put so much work into your sites and all and receive very little appreciation for all that work. Don't let that bad days control your outcome. Everyone has worries my friend and sometimes it can be overwhelming, even for a healthy person but don't let that get you down man. It really sounds like you just need to take a break from the computer for a few days and just enjoy some fun with your family.
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Hey Epoman. Sorry to hear about your high iron levels. I am aware of what that can do to someone. High iron can lead to or accelerate the onset of osteoporosis.
Even though I told you (Jeff) it was iron when you asked .. basically .. I didn't know you were posting that :P So I looked it up to better understand what Ferritin is. I know it has to do with Iron but I don't even know what my Feritin level is as well. I will find out when blood work is done a week from this coming Wed. But for now .. this is what I have found on high Feritin levels:
- from WebMD about Ferritin in Medical Tests (http://www.webmd.com/hw/lab_tests/hw6212.asp)
- Profiling hemodialysis patients with hyperferritinemia (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11522088&dopt=Abstract)
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I can't tell you how many times the lab had it wrong. I would freak out, but my doc would look at the results with an expression on his face like, "What did the lab do this time to F**k up?"
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this is what I have found on high Feritin levels:
- from WebMD about Ferritin in Medical Tests (http://www.webmd.com/hw/lab_tests/hw6212.asp)
- Profiling hemodialysis patients with hyperferritinemia (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11522088&dopt=Abstract)
Wow, thanks Angie. Very informative.
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Good Golly, Epoman, as if you did not have enough to worry about!!!
I looked up my labs and found my ferritin was 1264 last year and on my last lab it was down to 635. I had to discontinue my blood pressure meds.
You are truly an amazing man and you are appreciated for forming this necessary and so helpful community. I hope you are able to take a little well-deserved time off to enjoy your family and concentrate on getting yourself back on track. Sure glad you felt you could vent to us as you encourage us to do - that's what makes this site so comfortable and supportive... Take care and think good thoughts - next lab may be totally better! Anja :o
YOU ARE THE BEST!
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Epoman, You have done so much to help so many people with this site, you do deserve some time for you and your family. You just have to make that your number one priority, you and your family come first.
What was your ferritin level at your last lab? I really think it could be just a mistake, or even temporary. From everything I read, stress can also cause your ferritin level to go up, and you're under a lot of pressure right now, so that may have contributed to it.
Hang in there, take the time you need, and take care of yourself!
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Welcome to ihatedialysis.com a meeting place for people on Hemo or Peritoneal dialysis to rant and vent their frustrations about being on dialysis. No holds barred, the straight truth from fellow people who hate living on dialysis. We are not being negative, we just hate dialysis.
Site opened August 06, 2005. We are new so help us grow.
Epoman, this is a direct copy of what we read at the top of every page in the news box. This applies to you as well. As we all know you started this site to fill the gap in the world of dialysis websites were the truth was being masked or deleted by corporate America. You dreamed of a place that we could all come and rant, vent, find info and get all the things you wish you had been able to find when you first started. You can't forget that you created this site not only for us, but for yourself too. Just like you are there for everyone here, we are here for you as well. By not doing this your not living up to your no holds barred, straight truth statement. We want to hear your problems and help with them if we can, just like anyone else that comes to this site looking for or needing help.
From what I have read here you should try and find out what your past ferritin levels have been so you can compare them to your current high. Is this just an oddball reading that could be from a lab error, or a growing trend? It also sounds like you need to take a very long overdue and much needed vacation. Spend some time with your family, and try to forget your responsibilities (not that it is easy to do). I don't know all the aspects of running a website, but there must be someone who can help keep things running smoothly for a few days. Maybe your moderators can lend a hand.