I thought I was healthy but...

[claudia]

see update posting below
I don't know what to think.  I thought I was healthy despite a few "issues" but now I have discovered all sorts of things via bloodwork that I was in complete shock about.   
 Ijust found out that I now present with the homozygous factor V mutation.  Both my mother and father passed the gene to me.   I've had a couple of DVT's when I was younger and as I got older had some minor issues that I attributed to my job (I'm a sales rep and drive in a car all day).  But this...  totally scares me.  I've never been on blood thinners in the past (coumadin) because I am a vegetarian, active, travel a lot and the risks outweighed the benefits. I take a low dose aspirin daily, wear a compression stocking on the leg that had the DVT years ago.   My Hematologist wants me to use Lovenox whenever i am travelling in the car for more than a few hours and xeralto after my surgery.  No big deal but I'm supposed to stop all aspirin two weeks before the surgery and my hematologist wants me to give myself a shot of Lovenox for the trip up to SC. 
THEN... my iron is at 13 and they want it at 15 so they want me to take iron supplements.
I can't take iron other than Bifera which I take daily.   Iron makes me dreadfully sick.  I've tried em all.  As a vegetarian I have always had an iron challenge but I think 13 is pretty good.  I will be speaking to Lee tomorrow about all this but it seems like this is becoming too overwhelming.  I am more concerned about a PE or DVT at this point then the surgery.  I am worried that the risk is too great.  I am concerned that maybe they will not want to do the surgery on me.   It seems like I have opened the proverbial can of worms regarding my health.  I finally got the insurance issue taken care of now all this other "stufff" has come up.
I'm not in a very positive state of mind for a major surgery.
Any Factor 5 mutants out there??  Any advice on the iron?
Thank you.

[Dee Dee]

I started taking Bifera pre-surgery because I had it on hand.   My insurance did not cover the Irospan and it is a little pricey.  my iron levels actually went down from 13 to 12. So I started Irospan and my levels went up to 14 which was good enough for dr. gross.

Glad you got insurance worked out.  Dr. gross used zaralto with me and I had no issues tolerating it. 

 Keep us informed.

Dee

[podgornymd]

Hey Claudia,

I thought you might have a factor V deficiency. The tests are much better now than 17 yrs ago in diagnosing it. we are diagnosing it alot more now.

In terms of your iron i am unaware of a certain iron level that would preclude elective surgery.That really is up to your orthopedist and anesthesiologist. Maybe you can call DR. Gross's office and ask .

In terms of should you stop your aspirin, that is a tough call. The doctors have to weigh the risk and benefits and if you stay on aspirin up til surgery and you have a lot of bleeding that can be a big problem because aspirin blocks platelets from clotting. On the other hand if you stop aspirin you are at risk for a blood clot.Trust me you are not the only one with that predicament . It happens quite often where someone with your disease has to have surgery. I dont know the answer to it but i know Dr. gross works in columbia which is a big city and has a great teaching hospital where they see that a lot.You should run it by dr. gross and see if he has dealt witht his before.

the bottom line is you need to express your concerns to the hematologist and your hematologist and orthopedist need to be in close contact with each other.

The other thing is if you get the ok for surgery you can elect to have an autotransfusion wehre they use your own blood if you lose a lot.

wish i had more info for you but i think your surgery will get done and i really dont think the iron is that big of a deal.

good luck.let me know what happens.

[Pat Walter]

I think you should call Lee at Dr. Gross's office and discuss all this with her.  We are not doctors.  If a med is making you nauseated, then you need to change it or get something that doesn't or see if you can skip taking it.

This is all very complicated and really - the doctor should be making the call and decisions for you.  Maybe he should talk with your hematologist or visa versa.  You got to get them all on the same page with results you can live with. 

Only the doctors can do that for you.  Talk to them more and tell them how upset you are.  Be honest and say you need answers you can live with.

Good Luck.

Pat

[claudia]

thank you everyone.  I'm just getting scared with all the complications that are occurring.  Not going as simple and smooth as I had anticipated.  Seems like all sorts of things are popping up that I didn't know.  Maybe a good thing.  Just to be clear - I am only expressing my frustrations.
Just curious as to whether anyone else had the same issues. 
Thanks again.

[Wooster97]

Hi Claudia,

Wow, I found myself in a similar situation with regards to blood work.  My iron was low for surgery (13.7) and I found out my protein was very low as well.  It was a complete surprise.  I was upset about it, and I wondered if my surgery would have to be rescheduled.  I ended up having my surgery on the scheduled date with no complications.  I agree with Pat, it's best to talk to Lee, Nancy, or Dr. Gross.  I talked to Nancy, and she helped me make the decisions that I felt comfortable with before surgery.  I was open and let her know how I felt, and I think it was good for them to know.  Message me if you want to know more details. 

Best of luck to you,
Christina

[claudia]

UPDATE
Problems resolved!
My hematologist is awesome and she is soooo impressed with Dr. Gross.   She went on and on about Dr. Gross.    They talked and coordinated my care.  I am so relieved...  They are using a different protocol post surgery then the norm.   I'm sure Dr. Gross took the opportunity to educate her about hip "resurfacing".  She's a very "technical" person and I am sure she appreciated knowing the technical and mechanical differences between hip replacement and resurfacing. Yayyyy!
Ok...  I guess at this point, I'm good to go. 
The days are counting down...
THanks!

[evant]

Great news.

Brilliant example of how good this site is - great replies to your initial post and perfect response from Dr Gross.

Your in safe hands.

Good luck.

[hernanu]

Great news Claudia! It helps in many ways to be totally open with your doctor(s) and getting them all the opportunity to coordinate. If they are good, they will make a good team, as you're finding out.