February 22, 2010

February's Updates

I know I am behind again. But here is what I am up to theses days.

1/14 I had my fancy colon test - called Transit Marker Test. That result confirmed the fact I needed to see the colon surgeon on the 28th.

1/18 was blood work - follow up visit on the 25th showed my anemia was gone. No more iron pills. That I still have lupus anticoagulant a clotting disorder - need to stay on my blood thinner meds. I was hoping that changed.

1/19 saw my ortho dr and he ordered more Physical Therapy. I will go back in March for another steroid injection in the hip.

1/21 had an other Echo-bubble test - saw the New PH Dr on the 28th only for her to tell me I do not have PH. She said at the time of diagnosis in Oct. 07, I had what they called a temporary high reading of PH due to the enlarged pulmonary artery that had blood clots going through it at the time. She recommended I see 2 more drs at Froedtert - a Physical Medicine and Rehab Dr (PM+R) as well as a Rheumatologist which is on March 2nd. Dr. Z is also believing that with my Phrenic Nerves, bladder and now the colon nerves being affected that my problem is Autonomically related. She also said to stay with the same Pulmonary specialist because he is the best in his field. She told me that Dr. P is not upset with me just frustrated because he doesn't know what is wrong with me in totality and wants answers so he can better treat me.

I saw the PM+R dr on the 12th and she ordered Neuro therapy with Physical therapy.

1/28 was my appt. with colon surgeon - she ordered a manometry study. Okay now you are up to speed.

Current happenings:

I start my Physical therapy and Neuro therapy the 23rd of Feb. I have no clue what they will be doing or how long, it is 2 days a week for now.

I had my manometry study done of my colon which turned out not good - it told them I have colonic hypo-motility. My colon moves abnormally slow. I am currently in biofeedback because my nerve at the end of my colon is dead. They said that this is an autonomic disorder. The surgeon pushed to have my Autonomic testing done 2 weeks earlier than planned. Which I had done on the 17th of Feb. That was a 4 and a half hour test which I do not want to have to go through any time soon. The results of this test should be here in 4 weeks.

On the 25th this month I go to have another Pulmonary Function Test done to see if Pulmonary Rehab will help me. Right now we are all up in the air as to what will help or not. I will see the pulmonary dr the same day.

A couple of other tidbits: I am completely off my diabetes meds and my sugars are still under great control I have to watch everything I eat. Due to my breathing and swallowing issues at night I was approved to have a hospital bed. It is not a new one like in hospitals now a days, but it is a bed I can sleep in an upright position.


Aside from all this I have a special note for my Phriends at PHA, it saddens me that you have Pulmonary Hypertension a horrible lung disease where there is no cure. When I went to see the new PH Dr I was hoping she could tell me once and for all I had PH. I was looking for this diagnosis for two reasons 1) so we could put a name to what I have been going through, and 2) so that I could relate to you all in a better way. I go to the message boards and I feel helpless so many times, because I can not relate, I feel your pain but I don't have to live with it so I truly do not know how you feel and I can't give input many of the times. I only know what PH is by reading what is out there on the PHA website, and by writing you guys back and forth.

I am thankful that you have taken me under your wings and call me your phriend. I pray that some day you will receive the news that a cure has been found. You have a deadly disease with no cure and that truly hurts. Thank you for always supporting me, caring for me when you have more on your plate than I do. With much Love, Deb