Good luck with the Mayo. Sounds like your current team had their chance and blew it. You won't be able to get your confidence in them back. You need a fresh start and had a good experience there before and they know your brain history. I'm in Minneapolis so if there's anything I can do to help you while you're there let me know and I will if I can. I hope they get you in quickly.
Still waiting
- Thread starter mom2angel
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wow I hope you get sorted out and soon, it sounds like a nightmare,
Wow. Wow. Wow. Sounds crazy. Someone is giving you the runaround. I hope you'll straighten it out soon.
Wishing you the best ! Keep us posted.
Wishing you the best ! Keep us posted.
If I don't hear from my local doctor by tomorrow morning about the Mayo referral he was doing, I will call them myself and make an appointment. Hopefully I will at least have an appointment date by the end of the day tomorrow. Way to many reasons why I need to go there. I feel like I've been given so many signs that I need to ditch Omaha and go to Mayos, but I just haven't accepted them. Time to stop wavering, and just start fresh with Mayo. I will update you all when I know something.
Also, I told the Omaha surgeon that I am worried that my Oxygen level gets too low at night. My husband hears me gasping like I can't get air. The surgeon said I should see the sleep apnea people. So now I have epilepsy, sleep apnea..what else will they diagnose me with? Haha. I'm not taking seizure meds or seeing the sleep apnea people. We will start over at Mayo and try to get this valve replaced or somehow take off whatever is sitting on it obstructing blood flow. I already feel like a weight has been lifted with this decision to go there.
Also, I told the Omaha surgeon that I am worried that my Oxygen level gets too low at night. My husband hears me gasping like I can't get air. The surgeon said I should see the sleep apnea people. So now I have epilepsy, sleep apnea..what else will they diagnose me with? Haha. I'm not taking seizure meds or seeing the sleep apnea people. We will start over at Mayo and try to get this valve replaced or somehow take off whatever is sitting on it obstructing blood flow. I already feel like a weight has been lifted with this decision to go there.
Your last post is the best ever! I just know you will be happy and amazed at how you are treated in Rochester.
As for the sleep apnea testing and other recommendations, my pcp wanted me to go back to a gastroenterologist( just had a clear colonoscopy middle of September) so I went ahead and made appointment with hematologist. I just had my second iron infusion after weekly blood transfusions (that did no good) and feel it is helping.
Will be following and wish you the best.
As for the sleep apnea testing and other recommendations, my pcp wanted me to go back to a gastroenterologist( just had a clear colonoscopy middle of September) so I went ahead and made appointment with hematologist. I just had my second iron infusion after weekly blood transfusions (that did no good) and feel it is helping.
Will be following and wish you the best.
Thank you jwinter. The Mayo Clinic referral is being processed. When my family doctor gets back in the office Tuesday, he has to call Mayo to answer some questions they have. Then I just wait to hear from their cardiovascular department. A weight has been lifted off my shoulders. This was the right choice.
Still nothing. Planning to call Mayo tomorrow and try to get something done quicker. Hoping to tell them how much I am declining and get an appointment made. It's crazy that I've been left at home with very little follow up, in congestive heart failure. But, I know I'm not the only one that has had this happen. I think it's far too common, and sad.
Called the Mayo Clinic today. Then called the other hospital to get phone numbers and have records sent. Mayo has been amazing at communicating with me. They just called back to explain that they were waiting on a few more records to be sent. Then, they will look over everything and call me back next week with an appointment. I feel like I've gotten more done in a day with them than I did in several months with the other hospital. I'm getting excited now, and finally getting motivated to get things ready here at home. Hope this goes great and we get an early January appointment. Happy New Year everyone!
PS: my second mechanical valve is exactly 24 years old today! I guess the wait allowed me to hit that milestone!
PS: my second mechanical valve is exactly 24 years old today! I guess the wait allowed me to hit that milestone!
Got ahold of Mayo today. We go in next Thursday, Jan 11th for test, then we see the Doctor Friday the 12th. Yay! I'll keep you all updated with what we find out.
pellicle
Professional Dingbat, Guru and Merkintologist
mom2angel;n881040 said:
... I'll be thinking of ya!
Best Wishes for a plan to move out of this current mess
Glad to hear this news and wishing you a plan you have confidence in!
mom2angel;n881040 said:
Alleluia! So glad some concrete steps are being taken with you. I can't imagine how difficult this waiting and runaround has been with the previous clinic. Wishing you all the best on Thursday and Friday at Mayo. Sounds like you made the right decision.
Thank ottagal. I am so excited! I know I will be in good hands there. We will update everyone with what we find out.
One more update: Mayo thinks my valve is fine! They think i may have Constrictive Pericarditis. We have to go back up for a few more tests in order for them to know what I have. I go up next week or the week of Feb 5th. If that's what I have, they will do an Open Heart Surgery to remove the pericardium. Interesting, as I never knew that was even possible. Has anyone had this done?
I'm so mentally relieved that we are finally on the right track to fixing this issue. All the mental stress is gone and I feel human again. Thank you all for your advice and comments on this site. Have a great week!
I'm so mentally relieved that we are finally on the right track to fixing this issue. All the mental stress is gone and I feel human again. Thank you all for your advice and comments on this site. Have a great week!
Whoa, that's crazy. Well if you have to have OHS let's fix the right problem, right? Glad you're getting answers. Good luck with the next round of tests!
Wow! So glad you're on the road to getting the proper diagnoses and open heart surgery for the right problem!
Best of luck!
Best of luck!
Thanks Foreverthankful. I'm ready to put this all behind me and move on with life
