NEWS!
12/12/12 - what a cool date, aye?
Hey everyone!
I just actually was home and got to speak to Dr. Brown! Finally after MONTHS of calling! Yeah! He's almost always so nice in 'person'. Here's what he said:
1) the MRCP is too old now and I'll need to redo it (which sucks since that's another $100 bill)
2) my continuing laryngitis could be a significant clue to the CP and gastroenteritis
3) My daily laryngitis may also be indicative of a much more significant problem: trachael broncheal malacia which if untreated, may need surgery and stents (ie. is very serios!). He says I definitely need a more thorough work up on the ENT side and may also need to see a cardiothoracic surgeon. I should also try two more acid reflux meds: zantax and sucralfate along with the protonix 2x/day (which I guess he'll prescribe when I see him). This is great for me since I've been trying for years with different ENT's to help fix the lack of voice. They just say it's allergies and give me antibiotics and steroids, which work somewhat for a week or so then I'm back to no voice. Even when I was still working, I had big problems with my voice. I remember having to use a microphone to teach my classes!
4) We'll most likely need to do four more tests: pH study, upper GI, endoscopy, oesophageal minometry (I hope I got them all right!)
I asked which doc I should see first (ENT, Dr. Gupta, surgeon, etc.) and he said to come see him. I also asked if I might be able to get the MRCP done on the same day I see him at BIDMC since CCH couldn't get access. He said he'd try to arrange it. So first step, get an appt to see him next week.
I'm so relieved to have SOMETHING happening! And he always seems to have so many ideas and looks at the whole puzzle. Now we just need to fix the communication issue and it will be perfect!
Progress, I hope and pray. And I may even get admitted while I'm there if I feel as crappy as I do now. Which would be scary but good in the long run if the dreaded PICC line is started and TPN and all that. I'm hoping hard for an improvement. Send good energy if you can - I could use it for sure. Luv, Nibbor
Hey everyone!
I just actually was home and got to speak to Dr. Brown! Finally after MONTHS of calling! Yeah! He's almost always so nice in 'person'. Here's what he said:
1) the MRCP is too old now and I'll need to redo it (which sucks since that's another $100 bill)
2) my continuing laryngitis could be a significant clue to the CP and gastroenteritis
3) My daily laryngitis may also be indicative of a much more significant problem: trachael broncheal malacia which if untreated, may need surgery and stents (ie. is very serios!). He says I definitely need a more thorough work up on the ENT side and may also need to see a cardiothoracic surgeon. I should also try two more acid reflux meds: zantax and sucralfate along with the protonix 2x/day (which I guess he'll prescribe when I see him). This is great for me since I've been trying for years with different ENT's to help fix the lack of voice. They just say it's allergies and give me antibiotics and steroids, which work somewhat for a week or so then I'm back to no voice. Even when I was still working, I had big problems with my voice. I remember having to use a microphone to teach my classes!
4) We'll most likely need to do four more tests: pH study, upper GI, endoscopy, oesophageal minometry (I hope I got them all right!)
I asked which doc I should see first (ENT, Dr. Gupta, surgeon, etc.) and he said to come see him. I also asked if I might be able to get the MRCP done on the same day I see him at BIDMC since CCH couldn't get access. He said he'd try to arrange it. So first step, get an appt to see him next week.
I'm so relieved to have SOMETHING happening! And he always seems to have so many ideas and looks at the whole puzzle. Now we just need to fix the communication issue and it will be perfect!
Progress, I hope and pray. And I may even get admitted while I'm there if I feel as crappy as I do now. Which would be scary but good in the long run if the dreaded PICC line is started and TPN and all that. I'm hoping hard for an improvement. Send good energy if you can - I could use it for sure. Luv, Nibbor
Replies
That sure is a lot to deal with. I\'m sending all my Chi energy your way. Along with some prayers. At least the ball is rolling in your favor. Brian
YEAH!!!! Hopefully you will start to feel better soon.
There is nothing worse than feeling yucky for so long...It is always horrible just sitting and waiting while nothing is happening and you are feeling worse and worse each day. I am happy you have your Dr. Brown. Hope he figures things out for you & figures things out for you.
Cheryl
Ta! It\'s weird to hope you feel worse, but I\'m so tired and in such pain it would be a relief to be in the hospital. And more so, up in Boston at Beth Isreal. That way, things would be in my specialist court so to speak. I\'ll call for an appt tomorrow and hope to get in ASAP.
Strange to think I might be in the hospital for Xmas. Yuck! Makes me even more grateful for the phone - ta again. Wish me luck tomorrow! Nibs ;)
Please let me know what happens, and I will say a prayer that the doctor sends you to the hospital ASAP..the sooner you\'re in the sooner you\'re home..
Cheryl
Any word from the dr yet?
No, I just got an appt for next Thurs. I\'m hoping that he will just admit me and fix me up! Even Xmas in the hospital is preferable to all this horrible pain and inactivity. And at least he\'s got something that might help, aye?
How are you doing? Gearing up for Xmas? Hope things are jolly at your place :). I\'ll live Xmas thro your pics. Nibs
I sincerely hope this all works out for you. You deserve better. Prayers and wishes , Brian TTFN