We got lunch at BJ's and then to end our day we drove to Santa Monica Pier after the doctor's appts and it was such a lovely day. Don and Fiona got tickets to be in the audience of Are You Smarter Than A 5th Grader this coming Sunday. That will be a lot of fun. They were filming a commercial on the Pier. It looked like a Nike commerical. We will have to see it when it comes out.
We saw the cardiologist last. We were late because the pulmonologist took a long time, but it wasn't a problem. The cardiologist was the same one she saw 2 years ago. She asked a lot of questions and noted the changes but she said there was no reason to prevent Fiona from having a transplant. WOO HOO
NOW TO THE INTERESTING PART: note purple areas
First appointment was to see the pulmonologist. The doctor walked by and grabbed her paperwork and said, "I'll be right back." We waited about 15 minutes and Fiona went and told the nurse that we had a cardiology appointment in 45 minutes that we couldn't be late to. The nurse located the doctor and he send word back to us to just wait. He was looking over her records and there was a lot to see. He would get to her as soon as he could. (The nurse called cardiology to let them know we would be late because we were in another appointment.)
So the pulm doc walks in and looks at Fiona and said, "Boy, you are a complicated case!" So he starts asking questions and Fiona told him about her lung bleeds. He was Ok when she mentioned the pulmonary AVM that was embolized 2 years ago. Ok, that is bad but a not horrible situation. Then she told him about her November bleed and that they had to embolize the bronchial artery. OH MY...this is really bad. Then she tells him she has a currently bleeding AVM. OH MY.......So he explains she has both pulmonary and bronchial AVMS....(I'm thinking yeah? What am I missing here?) He explains that the pressure in pulmonary AVMs is very low (20 what ever the measuring unit is) and when they bleed they are usually littler. But the bronchial artery comes right off the aorta and the pressure is the top number of your blood pressure. These bleeds can be really dangerous. "YOU KNOW THAT YOU DON'T BLEED TO DEATH WITH AVMS, RIGHT?" he proceeds to say. "Yeah we have been told that," we said. "I understand the biggest problem is any infection as it will get into that area and then the infection will be taken to the brain." "Yes, he said but again these patients, if they die will be from ASPHYXIATION!!!" (OH CRAP) What happens is the bronchial tubes (your windpipe-the purple areas in the picture above) can fill with blood very quickly, especially Fiona's since she is a small woman. So if she can't cough it up or it stays there too long and becomes more clotted it would fill up and she would not be able to breath. This happens within just 3-4 minutes. (OK HEART RATE JUST JUMPED) So he proceeds to tell us that we could have her right lung REMOVED! (OH NO WE AREN'T! Why take out a healthy organ and leave the damaged one in? This is totaly and completely STUPID.) So I express my disagreement for this plan. He clarified it with, "Oh this is only if she has another bleed that they can't embolize then they will have to take out part or all of the right lung." (OK I'm freaking out now) So he says, "I don't think this is liver related. It is only in one side of the lung." (POOOP) So he continues to talked to Fiona, seeing the spider veins, hearing she is frequently out of breath, etc. "Well maybe it is liver related. What does your Pulmonologist thinking?" We explained he thinks she has a non-standard form of Heptopulmonary Syndrome but we are having problems proving it. He looks at the pulmonary function studies and noted that on 100% she is perfect. That shouldn't be with HPS. We told him her bubble echo, however, was 1-2 SECONDS; she is shunting so quickly they cathed her right heart thinking there as a hole in it or she had pulmonary hypertension. "UM," he says. "I am beginning to agree this is pointing more and more to the liver causing it." (FINGERS CROSSED TRYING VERY HARD NOT TO CRY) "OK, what do you want done?" we asked. "Our pulm knows you need more tests. Name them and we will get them ordered TODAY." So he gave us a list of about 6 tests to be done. So we left the appointment with him going to talk to the liver team about going for exemption points for non-standard HPS at the presentation meeting next Friday. He is very concerned these AVMs are life threatening. Something has to be done.
Now with that said, it is only another piece to be considered in the eval process. It doesn't mean anything will be done. But at least SOMEONE IS FIGHTING FOR HER! I got my wish. PRAYERS WERE ANSWERED TODAY. AT LEAST SOMEONE IS FIGHTING FOR HER.
So we walked out and Fiona called the tx coordinator from our HMO and the test requests were immediately sent to her pulmonologist. We see him this Friday and hopefully he can speed this up and get these tests done ASAP....we'll go inpatient!
I'm not sure what this all means in the big picture but at least today I feel the seriousness of Fiona's condition was finally seen. I realize there are big problems with getting any exemption points and almost impossible to get non-standard HPS but at least someone is going to try.
I still think it is absolutely insane wanting to take out the organs the liver is damaging when the liver is what is damaged. Taking out the spleen and now the right lung just doesn't make any sense to me at all. This is such a completely backwards (half##@@#$) way of doing something. Come on guys! How stupid do you think we are? I can see some people buying this hook line and sinker, but we aren't. I would go from doctor to doctor to avoid such insanity. We are being told her medical state is very fragile for surgery but we are ripping organs out of her? Come on.
So we wait and hope we can get the tests done very quickly. The problem is going to be all the contrast each of the tests are going to need. She is already close to contrast overload so there is going to have to be some medical planning done.
We will know about the evaluation the week of August 4th. Pray she is accepted. That is the beginning of this journey. The exemption points will take a long time but at least if she is accepted she has a chance.
Today I felt like we were in the Footprints in the Sand, where God is carrying us when we can't bear it anymore, the pain is too great. Today we were carried.
Peggy
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