procrite, iron pills, feeling weak

[designlady]

Procrit

Procrit

Hey David!

Sorry you are experiencing so much...I know how that drains your health! It seems like you are never going to feel better.

I also had sob and was severely anemic after my surgery (8 months ago). I was actually given a tranfusion while in the hospital. After getting home however my anemia got worse. My GP put me on iron pills and 10,000 units of Procrit a week. What a difference! In about 1 week I started feeling much better! The procrit really did the trick! Since your insurance won't cover it let me tell you some things about Procrit...it is very, very expensive. It cost us 100 dollars a shot and my insurance paid 1000 dollars a shot. So the total cost of each injection was 1100 dollars. Check with your insurance however. If they say they won't pay explain to them that Procrit falls under the "special" drug category. That is why we had to pay 100 dollars for each shot. I do believe that most insurance policies have continginecies for this medicine. (They probably don't want you to know about them however.) Also Procrit hurts so bad going in. It burns like everything! But it is a very small needle and doesn't go into a muscle so as soon as the med is in the pain stops. I think Procrit is what made me turn the corner. I had felt so bad for 3 to 4 months! Hope this helps!

Jane

 

[davidpa28140]

Ross and Jane thank you for your replies. I spent sometime today on the phone trying to nail down just who should be managing my meds, as each person I see; seems to have no idea who prescribed what for what reason. I think I reached the conclusion today that the primary care doc will take this up; I have an appointment with him on Weds. I was rather disappointed with the surgeons office in that they immediately bounced me to a pharmacy person(could be the norm , this is my first time in a hospital for anything) I have to say that I was able to eat a little more today as the nausea feeling has decreased (maybe the ER prescribed antibiotic I stopped taking?) Ross, I am going to ask my PCP about some more blood work as I am still sob and feel like I have been drinking (I don't drink) I had hoped to be washing the airplane by now but instead I get winded walking to the car, I am afraid to try to drive. I will also ask the PCP if there is any other ways of getting the procrite. I was given some of it in the hospital and have to say I felt much better the first week I was released than I do now at nearly 12 days out. The first week at home I could walk almost an hour now I must stop every 3 minutes or so, something must change.

Thanks again,
David

 

[Ross]

Well your not going to be washing the plane for at least 4 more weeks, so don't even think about it. For the way you feel, I'd be calling that Doctor for an appointment tomorrow. You have something going on there that shouldn't be and it needs to be addressed sooner then later.

 

[davidpa28140]

update

update

I saw my PCP today, he agreed that we should remain off the antibiotic as well as the digoxson (misspelled) I stopped taking these a few days ago and my nausea ended shortly after, I cant tell you how nice it is to want to eat and actually enjoy it. The PCP sent me for yet another chest x-ray, my breathing is still poor but my strength and endurance is once again growing although I wish faster. I am scheduled for blood work (again) next week to make sure that the red cell count is headed the right way. I have reduced the amount of iron pills I take a day, which I know is counter productive to increasing the red cell count but is absolutely required for me to avoid constipation and upset stomach. I have a whole new appreciation for those that regularly suffer from that. I have been eating lots of red meat/liver/red beets ect in an attempt to make up for the decrease in pills. Thank you all for your input,
Dave

 

[Freddie]

The iron pills say "Ferrous sulfate 5 GR" on them which I assume is 5 grams

http://en.wikipedia.org/wiki/Grain_(measure)

Hey there David, your GR means grains and there's 64.798.91 milligrams in one 'grain'
So, multiply your 5GR to 65 (I rounded up) and you get 325 milligrams so you should be okay with the dosage.
Something else is going on and best see your doctor.

OMGOSH.
I'm totally surprised that no one picked up on this.
DAVID, you were taking 3 pills a day - each pill contains your maximum dose for one day. So you were actually taking 975 grams a day
One of your pills was/is enough for the day.
Sorry.

 

[davidpa28140]

Wow , kind of proves that we are still working with humans, I am embarrassed I didn't think of it myself. On a humorous side note The flight department called me today for a random drug test, I explained that this may not be the best of times!!

 

[Eva]

As for iron pills, ask your pharmacist for a kind that does not cause constipation, as FE PLUS (Ferrous Fumarate) which I take and it helps me a lot. Good luck.

 

[briansmom]

I have been out of town so I wasn't able to respond earlier. My son has had chronic anemia and we have done the procrit (erythropoiten)thing a lot. Please post numbers from your next blood work. If your HGB levels is 8 or below, then you need a transfusion. Hopefully they will do a CBC and an iron study with manual differential.

My son also could not tolerate the iron pills and has pretty much refused to take them. They make him really nauseous. He ended up getting weekly IV iron for 10 weeks and it really turned him around. He still has issues with occasional anemia, but only gets procrit about every 4 months. There are new rules for procrit and they will only give it now if his HGB level is below 11.0 - which is fairly low for a male. If you can swing the price yourself you will be amazed at how much better you will feel. Nancy gave really good advice. Please get a referrral to a hematologist - they may be able to get procrit approved by your insurance.

 

[DebbyA]

David,

Thank goodness your PCP sounds responsible and responsive! I hope you get away from this bump and back on a smooth recovery path soon.

I think it's awful how UNresponsive your surgeon has been. In fact, I think you should post his name so that others in your region will have a warning. A wizard of a surgeon is only part of the recipe for success--aftercare is extremely important too. Your experience is 360 degrees from mine, and I'm sorry you had to go through all this.

 

[NewValveNY]

David,
I just read your posting and thread..I have not logged in for a while. I was also sent home on iron and folate therapy since I lost blood and was anemic. To this day I feel better when I do a few weeks of iron and folic acid. But it is also binding so I mix a fiber drink in the morning before I have coffee. I use Konsyl or any brand of ground psyllium husk fiber. Mix it in a shaker with COLD water for a few seconds and it helps a lot. I sometimes have an additional fiber mix in the afternoon and try to drink water during the day. I usually take my medicines a few hours away from drinking fiber in case it interferes with absorbtion..but ask your pharmacist about medication absorbtion.
Good luck with your recovery, David. I hope your energy is getting better and you are having less shortness of breath... It takes time..give your body a rest when it demands rest. During the first few months after my surgery, I sometimes felt that I took two steps back in order to go three steps forward.
Allan

 

[davidpa28140]

Thanks for the input gang, my energy has been growing steadily stronger since getting off the antibiotic, and the other pill, both which made me want to avoid food and had other side effects. I have found that I can handle one 325 mg iron pill a day without trouble. I had a major victory this week and drove my car (no power steering/ manual transmission) it was so nice to regain a shred of independence! I still seem to have some fluid in my left lung but am gaining ground on the breathing tool plus I can walk up steep hills now. The set back during my second week was tough but things seem to be moving in the right direction now, I am very anxious to see less of the doctors(and the needles/IV?s) After some more improvement I intend to put my story on the ?stories? section. I found that very helpful leading up to my surgery.

Thanks again to everyone,
David

 

[Ross]

OMGOSH.
I'm totally surprised that no one picked up on this.
DAVID, you were taking 3 pills a day - each pill contains your maximum dose for one day. So you were actually taking 975 grams a day
One of your pills was/is enough for the day.
Sorry.

You sure it's not grams. 5 grams is 5000 milligrams.

Check those pills. Something isn't right here. Were they prescribed or over the counter?

http://www.drugs.com/imprints.php?action=search&drugname=Ferrous+sulfate+&I1=Search

 

[hensylee]

I was anemic after surg. My dr just looked at me, said 'you are anemic'; then did a test proving it. he gave me shots. Antibiotics, too, can make you feel bad after taking them for a few days. I often nearly give up before getting to the end of the pills.

Constipation will make you feel ill, and the strength used in taking care of the problem is also strength stealing. What about stool softeners?

wishing you well soon. I know this is debilitating and you need all your strength for healing from the surgery. Blessins............

 

[davidpa28140]

more good news and more questions

more good news and more questions

Yesterday, I got to fly the airplane (4.5 weeks post op) it was so nice. According to regulations I have to be with another pilot, until my FAA medical is returned to me, which will be a battle in itself. Amazing how much better I feel now that I can eat and get to keep my blood! I am looking at cardiac rehab programs right now; the trouble for me is the facility is a 60 mile drive and I?m back at work. I'm really on the fence if I want to do this or not. From doing a few searches here, I see that those who have done it feel they have benefited from it, but I'm not certain our circumstances are the same. I have been searching on-line for some basic guidelines such as bp limits, heart rate limits etc. but am coming up short. I have been walking several miles up and down hills a day already, but it would be nice to have some guidelines/goals to go by. I seem to be improving each day, and have been able to remain (thank you God) positive in emotions during my recovery, although I still have trouble getting to sleep without the Tylenol PMs at night. This site has been such a blessing to me throughout this surgery/recover I want to thank you all.
Any suggestions?

Thanks again David

 

[Freddie]

Good to hear from you David and happy to hear your feeling better.....HOORAY!

Have you tried breaking your Tylenol PM's in half? You have such a positive attitude you may be able to get yourself off these pills too - in time.

Good Luck and Take Care

 

[davidpa28140]

I'm working on it. After thrashing around for 2 hours last night I took one (instead of two) Tylenol PM's that worked for me, so it's getting better. I have read that many others have trouble sleeping after OHS for a bit so I'm not to worried about it, but the fever pills I have to take the better. That?s another one of the joys of this site, being able to see that what we/I am experiencing is not unusual. I hate to say it but after the surgery there is a real lack of information one is (at least me) sent home with.

Thank you,
Dave

 

[escargome]

Hey Dave,
Just hang in there. I finally found this forum about 3 and half months after my AVR. I went into my surgery anemic and came out worse. I too was sent home with the instructions to take iron pills. I took them hated them, and decided to eat liver (yuk!). But finally after about 2 months I got my levels up to what my doctor wanted. I am now about 4 and half months post-surgery and am finally feeling like my old self. It's gonna take a little time.

 

[davidpa28140]

Susan , that is worth some consideration. I really don't know, but my gut feeling is they will have black and white standards, I know an ekg, echo and 24 hour holter monitor (maybe a tread mill as well)will be some of them and I expect a flood of letters from doc's will also be required, but it is something I will look more into. I'm going for the insurance mandated training on the aircraft in 2 weeks so theres one "box checked" already.

Thanks for your imput,
David