Hello everyone,
I have been battling severe low oxygen levels for the past 6 months. I am now in need of oxygen 24 hours a day. I have had trouble with being diagnosed as the only thing the doctors could consistently find was low oxygen levels. Without oxygen, at rest or activity the level will now go to the upper 70’s. I also have chest pain, syncope, and fatigue. I recently went to a larger hospital and they discovered borderline pulmonary hypertension, and a PFO and Atrial Septal Aneurysm. But these only showed up during coughing. A TRansesophageal Echo was done but had to be quick as I was unstable under the anesthesia. I am currently in a hold pattern while the doctors all consult with each other, as they are not sure these things would account for the severity of symptoms. I was wondering if any one else had severe symptoms but a shunt effect only noticed during coughing on the tests. I was so happy when I thought we had a diagnosis but now worried I may be back to square one. Any words of encouragement from anyone?
So sorry you are going through so much! My shunting only showed up originally with apnea episode during TEE. I had a mini stroke that came days after having a hacking cough. Cardiologist said shunting is worse with coughing, sneezing, snoring, etc... I hope they can help you very, very soon!
Thanks Janie! Sounds like you have wen through a lot also. It’s nice to know I’m not alone in this however. Best wishes to you and I will keep everyone updated.
David,
My only suggestion is to make sure you are at a University hospital or one with a specialty heart center.
Best of luck as you muddle through the uncertainty. It must be stressful.
I am finally at a university hospital and have a great doctor team who really care about me. I was just set up to have a heart cath and repair next week. The doctor believes it will be curative! I will keep you updated. Thanks everyone.
hi david,
how old are you if i may ask? it is good you are at a university hospital with good doctors. you are among many who have or have had similar problems. best wishes and keep is posted. thanks, linda
hi again,
how are you being repaired?
thanks, linda
Hi Linda, I am 42. It’s good to hear others have gone through this (although I’m sorry they did.). The doctors had been telling me they never see this and I felt pretty alone. I will have the repair next week, however the date is still uncertain. I can’t wait to have it done as I am in need of oxygen constantly now. I’m not quite sure what they will use for closure but they believe it can be done via catheter approach.
David,
I am sorry to hear how much you have been through. I am also pleased to hear things seem to progressing better now and you feel good about your care.I know what it is like to be told your condition has never been seen. My ASD was combined with a bleeding disorder which nobody I had interacted with (10 plus doctors in major cities) had never dealt with the combo. There were theories on how to handle my case but nobody had dealt with somebody with my two conditions until I found my surgeon who said the combo was super rare but he had dealt with a couple of folks like me. Please keep us updated on how things go. We are here for your support.