Recent confirmed port infection with Proteus Mirabilis, no elevated wcb, redness, pus or fever

Dear Dr. Hanson,

I hope you’ve been well and managing the pandemic as best possible. I hope there’ll be new leadership soon who will listen and respect science more in the near future.

I wanted to touch base and see if there is an update regarding the stem cell studies from my son Noah and I. As time passes, managing our chronic health problems becomes more and more complicated. While I’m very grateful to still be alive, it’s thousands and thousands of dollars every year in medications and other healthcare related expenses to do so.

Recently, I had a power port in my right arm that became infected. What’s interesting about this event, is that not only do we have the positive culture in both the catheter and the tip of the port, but I had bloodwork drawn which showed I had no elevated wcb — and I was always wearing a heart monitor at the time, because I had an unexplained elevated heart rate. So I was wearing the monitor when the port was removed, so the heart monitor documented the change in my heart rate as it returned to normal.

So I had
* positive confirmed cultures in the port
* bloodwork which was normal
* elevated heart rate documented by a 24 hour monitor for 7 days
* visual documentation that the arm looked relatively normal, with only mild redness. When port was removed, the doctor noted no pus in the tissue.

The doctors who were supervising my care are looking into publishing this event as a case study in a patient with a still undiagnosed immune deficiency, since the lack of a normal immune response was incredibly well documented by a number of medical professionals.

As usual in my case, when I arrived at the procedure center at Cedars-Sinai to ask to remove the port, the nurse examining my arm snapped “it doesn’t look infected at all”, but thankfully the doctor is familiar with my case, spoke with my infectious disease doctor, and they agreed to take it out. It was a few days later the cultures returned positive.

The entire experience reminded me of the advice you gave me years ago, “stay with doctors who know your case”, and this experience with the port was definitely an undeniable example of why your advice was so valuable and important.

The experience with Dr. B was disappointing to say the least as he was condensing and rude, so I haven’t communicated with him in years. It is difficult enough to suffer with a serious immune deficiency but to have a doctor who is supposed to be an ‘expert’ be dismissive of the facts in my case only adds additional pain and anxiety on top an already extraordinary journey.

I hope you are well and maybe one day there will be a breakthrough which may help my son, Noah, live a more ordinary life. I’m hoping maybe the research into Covid may shed more light on the complement system, which may in turn help better understand what’s happening with us.

Thank you again for seeing us a few years ago, and I hope you are well.

Sincerely,
Tara

Dob April 1, 1975

Noah
Dob February 17, 2003

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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