Hello All,

I came to this site in hopes of looking for some answers. My husband has had blood clots for over 30 yrs. He has the Protein S Deficiency, The Factor 5, The Anti-phospholipid Antibodies, and a few more that I can not think of right now. He has hundreds of Blood Clots to his legs and arms. Has had Dozens of Pulmonary Emboli's, has thrown them to his heart and even about 8 years ago had a Previous CVST, that we thought was all "healed".

In October we went to the Urgent Care because my husband could not hear... An ambulance ride later, we are in the Hospital being told that his O2 Levels were Extremely Low, his body was "filled" with extreme levels of Carbon Dioxide, and he would need to be placed on a "BPap" Machine to expel the "Dioxide". Unfortunately my husband is Extremely Facial Claustrophobic, and with the Numbers of Dioxide increasing, they had to intubate him. 1 Week later they discharge him, with no known reason for what happened. They set up an Oxygen take for use when his O2 numbers get low. They mentioned that he had had some Heart Issues and refer us to a Heart Dr.

Fast forward to November 27, I have to call an ambulance to my home as my husband is unconscious, and I am not able to wake him. His O2 bounced between 46 & 76. We go to ER again and I explain what happened in the previous month. Same thing, his O2 levels are in the dirt and his Carbon Dioxide Levels are through the roof again, and they can not get him conscious. They try to Not Intubate him, and instead try the High Flow Heated Oxygen to no avail and had to intubate him again. They completed head CT, MRI & MRI with Contrast. Several days later, we are told that he has had a "Type" of a Stroke, again a few days in they get his levels to normal and discharge him home with continued use of oxygen when numbers lower, with another referral to for an Urgent Sleep Study (Which as of today, we still have not had). We see the Heart Dr. in December and there are no abnormalities according to him.

Fast forward again to December 24th and yet again, I need to call an ambulance as my Husband is unconscious, will not wake even with Oxygen and sternal rubs. We get him to the ER and this time his O2 Sats are in the toilet again, he has Extremely Elevated Levels of Carbon Dioxide & Carbon Monoxide. They were able this time to get him to tolerate the High Flow Nasal Canula. At this ER stay they inform us that at his November Stay they had discovered a "Unique" Cluster of Blood Clots called a CVST, and another unique cluster at the Back of his Sinus Cavity at the back of his brain. And yet again, after a few days of his O2 levels returning to normal they send him home with orders to use oxygen when his levels lower.

I am waiting for the "Bomb" to drop in January. No one can answer the question as to "Why this is Happening?"

They returned him to Lovenox Injections for managing his Blood Disorders after the hospital stay in October, and yet this continues to happen. We have Oxygen at Home for when his O2 levels decrease, and yet it continues to happen.... His Hematologist Expert at Oregon Health Sciences University (OHSU) in Portland is trying to reach out to other Pulmonology Experts in our State to no avail, and I am Extremely Concerned and looking for help.

Does anyone know if there is a way to reach out to the Mayo for assistance or where to go to next???