Procrit,Hypovolemia,and Dr Grubb

[Jenn202]

This is kind of a bunch of questions jumbled into one....sorry...just didnt want to do 3 separate posts lol

My first question is about Procrit: My Main problem at this point is the severe hypovolemic state I go into...... My ANS Dr is in the process of trying to get me approved for Procrit.....So far 1 denial....and he just resubmitted.

I spoke to a freind of the family last night who is a nurse....when I told her that my ANS Dr was trying to get me on Procrit for the hypovolemia she said that it was very dangerous to use if you are not severely anemic and have a VERY low hematocrit... ( I am only slighly anemic and a slight low hematocrit) she said that the Procrit could cause even more problems b/c my hematocrit could go dangerously up... Now this REALLY bothered and upset me b/c I have been hoping and banking on this drug to possibly help this problem...and I have tried just about every other option....

For those on Procrit or Know about Procrit, could you please give me some feedback as to whether this is true or not??

My Next question is: I posted earlier about the test for Hypovolemia where you are injected with a dye to measure your blood volume... I know some of you have had this test and reassured me that the dye was not as toxic as the dr's in Boston made it out to be.

I am considering having this test done now...so I was wondering if I could get some reiteration that the test went ok for those of you who went through it. I worry that the dye will give me some sort of long term problems... I wish the dr's did not put that thought into my head this summer....

My Last Question, but not least: I have an appointment April 11th to see dr Grubb. I am looking for a second opinion on my Hypovolemia... I am going back and forth this week as to whether I will get anymore anserws or thoughts than what I already have from my ANS Dr Here. My case of hypovolemia seems to fall on the severe side... For those of you who have seen Dr Grubb< Do you feel the trip is worth it? ( I am flying from CT)

Which leads to me to 1 more question; Last time I flew last year to Las Vegas and I went into a really bad episode with ANS/hypovolemia afterwards.... I wonder if it was from the plane flight.

What is everyones take on flying with Hypovolemia.... I hate to fly again if it might trigger something. Any knowledge or suggestions?

Sorry for so many questions in one post! I appreciate any help or advise I can get. I know you guys have a lot of Knowledge on all this.

Take Care

[violahen]

Hi:

Wow, it sounds like you are overwhelmed with so many things!

All I can tell you is YES, YES, YES go see Dr. Grubb. He is WONDERFUL. It is DEFINITELY worth the trip....also, with your blood volume issues....if I were you I would go in for IV fluids right before flying....IV fluids tend to help me when I am in a bad place....they seem to trick the body into thinking that the volume is pumped up...even if it isn't BLOOD volume per se.

I am sorry that you were scared by the comments about Procrit....I am not currently on Procrit because of the expense, but as Dr. Grubb will tell you....he has had great success.....he says he would giv e it to all of his patients if it were not so expensive. He has told me that he has had 80% success....and 15 out of the other 20% were allergic to the med and could not take it for that reason...I am still hoping to get it cleared by my insurance. Dr. Grubb will also tell you that you WILL need to be monitored while on procrit to be sure that you are getting the right amount, etc....since it does increase your red blood count, they need to be sure that your range falls in the right place while on it.

Good luck! I hope you go to meet Dr. Grubb....he is an incredible doc and an incredible person....he is so knowlaedgeable, but also so understanding and compassionate. He has truly changed my life.

Kristen

[briarrose]

I fly from Oregon to Ohio to see Dr. Grubb. I usually fly into Ohio at least 24 hours before my appointment because I know I need to head straight to bed after flying. Hydrate well with water & gatorade a few days before the trip. Take both on the flight with you, along with pretzels or salty peanuts. Get up and walk around during the flight to stretch out your legs. Wear compression stalkings.

Also, do a search on airplane travel here on this website, we've talked about what works before.

Dr. Grubb is a wonderful doctor and person. I have travelled 3 times now to see him and will continue to do so as needed. There isn't anyone here on the West Coast that has a clue about the **** we go through, let alone coming up with a treatment plan. Dr. Grubb is one of a kind, Great! Most of his office staff is very understanding and sympathetic too. That says a lot for any cardiology group! People travel from all over the world to see Dr. Grubb. I was very fortunate to find him and wouldn't trade him for anything.

The first time I saw Dr. Grubb he spent hours explaining POTS & Dysautonomia to me and my boyfriend. He was extremely patient and very informative, which I really needed. I learned more from him in a couple of hours and my boyfriend finally got it, boy he had no idea and didn't believe me until he heard it from Dr. Grubb.

I do the Epogen injections (procrit) and it has been one of the most successful things for me. As for your medical friend, she probably doesn't realize why this illness needs to have this kind of treatment. It's not just for anemia, it's a great treatment for people that suffer the affects of hypovolemia. Many POTS patients suffer from hypovolemia (you don't necessarily need to have a test to prove this because symptoms give it away) so it's important to boost your hematocrit and hemaglobin. They test your H & H regularly so as not to push you so far over the edge that it's dangerous.

The injections, along with IV Iron and neurontin have been my wonder drugs. I was nearly ready to give up my job, my children, my life so to speak before I found this combination. My treatment plan has helped with so many of my symptoms, I'm not cured but can better manage my life. I have energy again! Most of my symptoms are reduced to barely nothing. I do still have bad days but they are much fewer.

Be patient, it takes some time to kick in and make a difference. Actually, I was so anemic and iron deficient that it wasn't until they started giving me IV Iron along with the injections that I turned around. 3 weeks after the weekly iron and I noticed a huge difference in my life. I had been on the Epogen for about 3 months before they started the iron, so the Epogen didn't take until I had the iron. The pharmaceutical company makes it quite clear that you need adequate iron for the injections to work properly, so I would probably ask to have that checked before you start.

Good luck

steph

[Jenn202]

Thank you SO much violahen and Bria!! You gave such detailed answers......

I feel much better about seeing Grubb.... Viola: Does he usually run on time with his appts? I am hoping that maybe one more opinion could spark something that my ANS dr here has not thought of.... And also help me along with my insurance.

As far as flying..... Yes I will drink lots of fluids..... My problem seems to be that no matter how much I drink, my body does not allow the fluid to get into the cells..... I am on IV fluids right now periodically, so maybe going with a line in me would be the best since I could hook up after I get there.

Also Are compression stocking uncomfortable to hot? Where do you go to get them?

Thank you again for taking the time to reassure me that this is a good move.... and to listen to all my worries

[steph37822]

oops

[Jenn202]

Thank you Steph! I remember you are on procrit. I am sorry you are having a bit of a setback with the ankle surgery.

WOW! 7 hours?? Do you have to sit in the waiting room the whole time? I am just wondering if you can come and go if he gets that backed up.

I feel much more hopful about all this now... I am truly hoping that the Procrit can help me...... and reasuring that you are not anemic and on it.

Do you remember how long it took you for your insurance to finally approve it? Did you do anything specific to sway them?

I have 1 denial already... I'm worried I wont get it.

Thanks so much!!

[MightyMouse]

Jenn, because Dr. Grubb is on staff at the hospital and has to do rounds and also treat emergencies, those sometimes (often is more like it) backlog his schedule. I always try to keep in mind that if they're pulling him in to consult on a case, it's probably pretty bad for that patient and I'm relatively healthy in comparisson and will not be harmed by waiting. I've seen him 3 times and my appointments started within an hour of the scheduled time.

Nina

[steph37822]

oops

[violahen]

Hi:

Yes, Dr. Grubb can get backed up...although I am told that they are trying to keep his schedule light these days due to his own health issues he's been dealing witih. Also, he has a nurse practitioner helping out now which should help his load.

One other thing....if this is your first appt., you can expect that he will spend A LOT of time with you....the first time I met him I had a 3 PM appt....I went right in at 3 and he talked to me until 8 PM that night! He is incredible.

I too have stayed at the Hilton next door....they have a patient's rate which was very reasonable.

Good luck! I'm excited for you!

Kristen

[steph37822]

oops

[Jenn202]

Steph - Thanks for the tip! I just booked at that Hilton..they wanted 120$ a night for regular customers, and 82$ for patents. I still though the 82$ was steep..I will check it out and see if I can do better.

I there anythig to do in that area of Ohiio? Restraunts etc????? Just curios since I doubt we are going to want to sit on the medical campus all the time LOL

Also: I was wondering exactly what records Dr Grubb wants to look at.. I plan to bring all my Autonomic testing results, and some blood work...but I have so many other tests..like water depreivation etc, and tons of Lyme tests which are very pertinent to my case...but does he really have the time to sit through and look at your recoreds?.... From what I gathered from his office you just bring them in with you to the appt, but it would have to take him an hour just to read through my test results.. Any suggestions??

Thank you so much for all your great advise!

[steph37822]

oops

[Jenn202]

Steph - Again thank you so much for taking the time to respond.... !

I have used priceline... I think with not knowing how the flight will effect me, maybe I should go with the Hilton. ALthough I am going to do another internet search to see if there might be a deal I missed.

I'm glad there will be some thing to do when we are there.. My husband is comming with me so he enjoys exploring.

Yes I wish I could fax Dr Grub My records ahead of time but I guess they are not doing that anymore.... It is nice to hear that he will take all that time with me....

Its a lot to travel for a Dr, but I think this second opinion is well worth it....

Take Care

[violahen]

Hi:

When I first met Dr. Grubb I had sent him my records ahead of time. I would recommend doing that....I'm sure he would appreciate it so he can have a sense of your situation before you arrive.

Just a warning...they are usually swamped at MCO and the people on the phone are not always the nicest. I would just call them and tell them that you WILL be sending them ahead of time via mail. I would then call a week or so later to be sure they arrived.

Good luck!

Kristen