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Jubilee

Here's to a better year..

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Well earlier this month I went to Hopkins to have them investigate what's happening. I was very impressed with the facilities, and the care. They sat and chatted with me. Took their time, really listened.. basically acted like I was the only patient they needed to care for. Heck the pulmonologist gave me her cell number, email, along with all the other contact info and told the cleaning lady to come back later as she took her time going over all the information/history etc we had.

Basic testing shows.. I am in trouble. Ultrasound shows endo has invaded the urinary system (blocking the bladder from completely draining), my ovaries are affixed to the pelvic wall, the uterus is tilted and folded over in half, and while on lupron I have developed a fibroid, and it looks the the endometrium has invaded the muscle wall of the uterus itself. Gotta love being so complex that when they asked the Radiologist to double check things, he brought in his interns as well so yeah.. 6 people present (7 if you count hubby) for my pelvic U/S.. Nice thing though.. I know results caused they discussed it right then! With the bladder involvement I have been referred to a urugynecologist at their Pelvic Floor specialty clinic. The idea being that they would be able to attack and excise from not only the reproductive organs, but address the urinary tract, and they work in conjunction with surgeons able to do excision on the colon if necessary as well.

The basic lung testing shows there is definitely an issue..and it is not asthma. Ratio is good.. volumes bad. Not obstructive then. Best guess? They are betting its Endo as well : /

So in a couple of weeks when I go to the pelvic floor clinic, I will be also getting a full set of Pulmonary Function Tests, and cardio work up. They will review the ct from my prior ER visit in Oct, but might ask for more testing that way. Possible scenario is if I am scheduled for surgery soon, they will do a thorascopy (since I will already be sedated) and look at the lungs and take some biopsies. Remove any clots/implants that they see. Their belief is that I have some small implants affecting either the lining of the lungs, or the vessels that supply the lungs causing pulmonary hypertension.

So while it is great on one hand to feel vindicated/validated.. "Hey I told you this wasn't right!" On the other hand, its scary to find out "Actually .. its much much worse than you thought..."

On the upside, I have been doing a lot more research into things and was very excited to see a transcript from a recent synopsium for Endo. There is a lot of research supporting it as being an inflammatory disease. With the response of interleukins, and cytokines.. that are actually present in allergic responses as well. Suddenly the flare with both the endo, and allergies is making more sense. Its also reassuring that it can be "one" issue causing both.. and not that I have a multitude of things going on. Just one.. A huge one..

Thank you for you thoughts, and prayers.. I know they have certainly helped to carry me this far.

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Comments

  1. obxeyeguy's Avatar
    Wishing you all the best as you move forward in this process. May 2011 be better for you and your family.
    Mark
  2. Johns's Avatar
    Wow Kiddo...here's to a better year indeed! The prayers will continue, and you remain in our thoughts. You're an inspiration to all of us.
  3. Jubilee's Avatar
    Thank you for the well wishes, thoughts, and prayers. It is 90% certain that the endo is in my lungs, and currently experiencing a flare. Once again blood work shows elevated clotting factors, and now suspicious spots are on my x-rays as well. So I bumped up my pulmonology visit and will be seen on Monday. IN the mean time I am on strict limits to my activities since they are concerned I could throw a clot at anytime and cause an emboli or pneumothorax.
  4. asuperstar103's Avatar
    I sure hope you have a better year! Well wishes your way for sure!

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