Hematologist visit today not good. UPDATE...

Well, he says all my iron reserves is gone, I barely have platlets, I am not making new RBC's, Ferritin only came up 2 pts with Venafeer infusion and my Hemoglobin only came up to 9.  So they will start infusions weekly for aggresive treatment to replenish my iron reserves so I can start making my own RBC's again. 

I must take it slow and easy as to not cause myself coronary distress which will lead to a heart attack and he is thinking that is why I had mild heart attack last week of Sept 2012.  Wow I cannot believe I tanked this fast.

With that said, he agreed with me.  The doctors have let me run on lower end of normal too long which means a crisis that I needed extra oxygen or a loss of blood would take everything I had in reserve which is exactly what happened.  Had they listened to me, this would have never happened.  I would still have needed a few infusions but not like what is going to happen to me over the next year. 

My albumin is expected to rise fairly well when my iron is restored but I still have to push 200-300 grams a day mostly in shakes of course and food.  I am so freaking anemic its amazing I can still breath. 

So if you have to be a B*&^% then so be it.  SPEAK UP, YELL IT OUT, BE YOUR OWN ADVOCATE. Do not shut up till they listen. Do not end up in my shoes. 

I have always taken a strict regimen of vitamins with Vita lady's help and have always had good labs till I lost 2 units of blood which the surgeon said I would reabsorb and be fine when I asked if they were gonna give me some blood back which they did not.  From that point I went down hill even taking expensive amounts of Proferrin and Heme. 

Sorry I am kinda venting.  I am not sad about this and I would do the DS again and again because it saved my life.  Its the dang doctors that will end up killing me because they are too darn smart to look the DS and its needs up and understand that I only have approx 2 inches of the duodenum left that is responsible for absorbing iron so when I loose alot of iron or blood they need to replace it.

Carla

You are so spot on, Carla. You have to educate your medical folks and if they won't listen fire them and shop until you find ones that will listen. I'm so sorry this has been happening to you. Good luck with your infusions. Feel better.

--gina

The bad thing in medical field today is when you are in the hospital, you do not see your everyday doctors.  You graduate PA's and NP's that are strutten their stuff and showing thier feathers off and you get doctors that do not even have a clue about you. 

Trust me, they do not sit down and look over your past history well.

Carla

Mee toooo, thanks for your support

Carla

Venafeer takes about 90 min, the new stuff and dang it the name just fell off the edge of my tongue and I cannot find it now lol is a 15 min, virtually no reactions have occured from either of these two. 

The old timer takes approx 4 hours to infuse.

Carla

I'd heard they were all day events then someone the other day said 15 minutes, which is doable... 90 mins would be annoying.  Thanks for letting me know as I suspect I'll end up with infusions further down the line (my levels are slowly dropping and I just don't find Tender iron to be that tender - I'll keep at it with my liquid ferrous furmarate, copper and vit C plus one Tender iron for now).

Huneypie

Do keep trying because some is better than none.  I don't mind the infusions but I for some reason thought one infusion a year would do it but I will be doing an infusion 2 Fridays in a row 3 Fridays off then begin again.  After geting pumped up to where he thinks I should be which is mid to high normal, I will do an infusion once a month for rest of my life. 

Its not bad just disrupts life a little.  I will do what ever it takes because I enjoy living now and I love my family so much.  Plus, I have to be here for grandchildren someday because I will be a rockin A$$ granny lol.

Carla

Yes I thought it was once or twice a year - but maybe you have to have the quick infusions more frequently.