David and I had our annual trip to UCSF medical center, and it went as well as can be expected, I suppose.
I really like Dr. Puck’s new fellow. I liked her fellow from last year, but I think I may like her new fellow even more. She was very empathetic about our journey, so much so that David turned to me when she left the room and said “she looks very worried”. I had to explain to him she was just empathetic about us, which is a good thing. It means she’s a nice person.
(Empathy should be considered quality #1 in a good physician. You can’t graduate from medical school without it.)
So after we talked for a little bit, they drew some blood to check David’s pneumococcal levels to see how they compare with last years level, as well as run a number of other immunological tests.
The overall sense from the meeting, is that we’re just waiting to hear back from the N.I.H., from the skin cell tests they’re doing….and Dr. Puck said the results from those tests could take years. She said to grow the cells itself takes a year, and then it takes time to do the tests.
(I guess they’re going to grow lots of different kinds of cells from these skin cells, and then test how those cells function. Like grow some of our brain cells and nerve cells, etc. I hope I live long enough to get the results of those tests…)
I asked Dr. Puck if there were any new natural killer cell tests that had been developed over the past year, thinking maybe we could follow up on our low levels in the past, but she just dismissed that because she explained some people have no natural killer cells and they function just fine.
So where is the problem? I wish we could keep looking.
She noted David’s pointed teeth and high forehead like they did at the N.I.H. She said NEMO can cause a lot of problems in a lot of areas of the body.
While we wait for the results of the N.I.H, we’re doing antibiotics to keep us going and continuing to live a low key lifestyle. David has loose joints (which is fairly common in children his age), so she recommended a regular exercise routine because muscles will help protect his joints.
In some ways, the banality of the appointment masked the daily suffering I go through to keep surviving…I know there are many others who have it worse, but that doesn’t make my struggles any easier.
I’m very grateful there are antibiotics and IVIG, but she doesn’t think David needs IVIG yet. I’m not sure that I agree… I agree that his infections aren’t as bad as children with SCID, but I believe David would feel a lot better (and his mood would be better too), if he had access to regular IVIG therapy. I just wish it wasn’t so expensive.
I feel in some doctors offices, they give you the party-line, because they have been so burned by insurance companies–what the insurance companies will or will not do–that they only order things that they know an insurance company will easily say ‘yes’ too…they don’t want to deal with the fight.
But that doesn’t mean what insurance companies will say ‘yes’ to is truly what is the best path for the patient. It just means that is what insurance company will pay for.
There are so many cases of people being helped by IVIG therapy, including neurological disorders, in cases of immune deficiency that even a little bit of it on a regular basis would help him so much…
I wish money didn’t control who got access to what in this country.