Wednesday, March 25, 2009

AVM News... plus Led Zepplin... But but spelled different

Riding the Doctor Merry Go Round on a Horse Called Hope

I may have avoided updating this blog for a couple of months. I think I lost hope and faith that I would begin to feel better or that any one of my doctors were listening to me or helping me. I had hoped to have another baby back a year and a half ago before my health went south. I was very sad. I had nothing solid or enlightening to share on the subject of my health. Everything was the same for so long and I felt like I was beginning to whine and I can't do that to anyone who actually takes the time to read this crap. I HAVE TO REMEMBER THAT THIS BLOG WAS CREATED AS A MEANS FOR THOSE WITH AVM's & ANEMIA TO FIND AND SHARE INFORMATION. If anyone is frustrated and at their wit's end for information about these draining conditions, and if I have helped in any small way, then I have served my intended purpose here & am trying to help by sharing my little nuggets of experience and wisdom.

As previously posted, I spoke about the good health and happiness connection, about my slide downward with my health again, having tachycardia and weird heart arrhythmias. I was since placed on a drug to regulate my heart rate; a beta blocker. Theories are that my heart was stressed and was beating too rapidly along with irregular heart beats...a short circuit or misfiring. Well, no kidding it was stressed! My heart was trying to pump blood it did not have enough of through my anemic body. It just blew a circuit I guess. And, admittedly, stressors in my life did not help matters. It is amazing that certain health conditions and people can actually stress your heart.

I am better now. Back on the horse and hopeful that I now have doctors who can manage my health issues in a timely and correct way. Now I am trying to get medical clearance to try to get pregnant again through in vitro. The heart thing is better now and I have since been pumped up with intravenous iron....ALOT of it. I sat for 5 hours (drip, drip, drip) while my body sucked up much-needed iron. This brought up my iron stores which were literally rock bottom, while allowing my body to start making red blood cells to up my hemoglobin which was really beginning to slide. FYI to those who have received or will receive intravenous iron therapy: if you receive 2,000mg of iron or whatever dosage, you may experience side effects such as I did. For three days I had deep-bone pain after my IV. I have never ached so badly in every bone and joint in my body--I mean throbbing, pulsing, aching. It was like the flu from hell. Specific pain was in my hips, groin, thighs, knees & shins. I had to phone the hematologist and they prescribed pain medication for me. I was told this pain was my bone marrow working hard to make red blood cells after having been deprived of enough iron for so long.

I also have since had more endosopy and colonoscopy to search for those dastardly AVM's that can be lurking. The doctor could not find anything. That is not to say AVM's are not there. Remember, people half bleed to death like I did and the source of bleeding was not found by the time I was hospitalized. So, I know they could be there just waiting to break open. Is all the doctors could do was give me drugs to clot my blood (which is probably what gave me a blood clot!), transfuse me with blood and that was it. I will soon do a camera pill study for another look, possibly followed by a double balloon enteroscopy, which is a 4 hours or more procedure in an OR under general anesthesia, which scares me. This may occur only if the cameral pill study finds something I believe.

I am stable and feeling much better than I was 3 months ago. If I can remain stable, keep up my hemoglobin & iron, get the fibroid tumor situation figured out and be healthy enough to have that baby then I will be very happy. I have a pretty good hematologist and some new doctors at The Mayo Clinic and am hopeful they will continue to manage my condition for me. I am still on the doctor merry go round as I call it and again, I am hopeful they will make me well enough. In just one month's time I have seen 2 hematologists, 1 cardiololgist, 2 gastroenterologists, 1 internal medicine specialist, 2 gynecologists and 1 obstetrician/fertility specialtist--hence the Doctor Merry Go Round. Wish me luck!

from.... go visit... I mean it!
I am guilty of the Brain thing... I admit it. She has an AVM and wants help... I would offer... but I'm a little F'ed up because of the brain AVM.

...but some of you could help.... go do it.



Why did I post a towel in the "buy something" place... I don't know why but a towel shows up when you put "AVM" in the search box... but when you put 2 l's in "Led Zeppelin" you get nothing.... oh well... time to get funky...

Led Zeppelin-Stairway to Heaven

okay... good by... for now...

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