Answers, maybe.

Steve is still in the hospital, tomorrow will be day ten.

We have tentative answers. It is a high probability he has had the embolisms {he has numerous clots in both lungs} from the beginning. This whole ordeal began January 29, 2008 when Steve went to the ER for chest pain and difficulty breathing. This was eight days after her had had minor knee surgery. The first thing they suspected was a pulmonary embolism but instead diagnosed pneumonia and gave him antibiotics and sent him home. He landed in ICU two days later.

Since then he has been hospitalized thirteen times. Every time we have encountered a new doctor or explained the progression of his illness to anyone assigned to his case I have stated that he was hospitalized within a week of knee surgery. None of them ever felt that had anything to do with it. Until this week.

The director of the UCSF Fresno Pulmonary and Critical Care department has been in every day since Sunday to see us. Her explanation has been that it has been very difficult to see his lungs clearly on all the CT scans done at the other hospital. Plus they stopped looking for a PE after that first one. This hospital did a different type of scan and that's when they saw them. Regardless of when or how the fact is they are there and they are making him very sick.

The treatment is blood thinners, which he is on and his blood tests are coming back looking like they want. He is in a lot of pain, very short of breath and his heart rate soars anytime he even tries to move out of the bed. They wake him numerous times at night because his vital signs get concerning and they way they wake him is to knuckle him in the chest...the chest that is causing him a lot of pain. We are told this is going to get better with time after the blood thinners have had time to do what they need to do.

As far as his breathing/lung problems they think they have an answer. Right now they are looking at two things. During his biopsy last month something called a carcinoid tumor was found and removed. It was very small and they were able to remove it all. The thing about carcinoids is they are typically in the GI tract and one of the problems with them is they can either be cancerous or they cause a thing called carcinoid syndrome . Steve does have many of the symptoms but for some reason I am not feeling like this is what he has. Tests have been done and we should know soon. The more likely answer is something called Vocal Cord Dysfunction.
This is a complex condition and a little hard to diagnose but everyone seems to be in agreement this may be Steve's problem. There are many causes for this but in Steve's case it seems clear to all that it is because of GERD. According to a radiological study done last month he is refluxing all the way up to his throat. This can cause the vocal cords to close down. This is life threatening. This is probably what has been sending him to the ER over and over and over and over. This would also explain the "Kermit" voice!

In people who have VCD without an obvious cause the treatment is speech therapy. In Steve's case he is probably going to have to have surgery. Right now the hospital is trying to get a GI doctor to come in and consult on Steve. The on the 28th we will go to Stanford to consult with an ENT doctor.

They are also saying asthma, again. According to the breathing tests he is showing strongly that he has asthma. This also could be related to to GERD. They will do more testing on this tomorrow, hopefully. He is getting treatment for asthma symptoms already but the frustrating thing is those treatments can actually worsen GERD. Could explain why he keeps getting worse. Unfortunately you are darned if you do, darned if you don't. At this point no one is really willing to stop those treatments to see if he improves because of the risk his breathing could get worse. I agree. We'll figure all that out after the GI and ENT doctors see him.

I really feel he is in good hands where he is. The doctors are wonderful and he has been blessed with some really good nurses and aides. He is bored, tired and frustrated but he realizes he needs to stay so we can get to the bottom of this once and for all. He says he can't even go to the bathroom without them running in and banging on the door to see if he's alright! So good to know they are watching at all times! {even though he would appreciate a little privacy!} He has been sleeping a lot and his feet are very swollen. He just wants to feel well again. This has been a very long road. He has been hospitalized almost constantly now for six weeks. He would appreciate visitors if anyone has time, or phone calls. If he's asleep he doesn't hear it so don't worry about disturbing his sleep.

He is currently at Community Regional Medical Center and the number is 459-6000.