Noah, me and Covid

Even though Noah and I haven’t left the apartment in days,

he still wants me wearing a mask if I’m gonna be hanging out next to him for more than a few minutes lol.

I guess it doesn’t hurt to err on the safe side ❤️

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Strange wart-like bump on my right elbow

I have this strange wart-like bump on my elbow…it’s been there now for a couple of months. I’m not sure if it’s getting bigger or not, that’s why I put that coin next to it, The next time I take a photo of it I can compare for size…

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COVID-19 Vaccine Should Be ‘Very Effective’

The article I’ve attached at the bottom of this email talks about the vaccine effective rate for other diseases. For your show this week, I’m going to put together a chart of traditional childhood vaccines and their effective rate.

You can also cover what those diseases were like for people, some of their more horrifying symptoms, basically reminding people that vaccines do work and why it’s important everyone who can get one, takes it.

Perhaps what’s so ‘shocking’ for people about Covid, is that it’s been a little while since we’ve had such a widespread crippling disease — last one being polio (?) So people have forgotten what human diseases can do to us. When the polio vaccine came out, people lined up for a long time to get the vaccine. They had seen what polio does to their friends and family — even the President had it — so people knew the vaccine was important.

Vaccine’s success story on the course of human diseases has also been its curse, because some people have lost why they’re so important, they’re taking our vaccine world for granted…

And vaccines are definitely not something to take for granted…

What I don’t quite understand how, different vaccines work differently in the human body, that’s why the Pneumoccal vaccine is a measure of someone’s immune system, and a big part of the mystery of our case, why we’ve needed so many Pneumoccal shots. There’s something about that vaccine that involves the t-cells, I don’t know know, I’ve ever understood it when people have tried to explain it to me.

Either way, vaccines are important and they work and we don’t entirely understand the immune system, and they still work…

https://www.webmd.com/lung/news/20200803/covid-19-vaccine-should-be-very-effective

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Dr. Hanson isn’t at the NIH anymore — email bounced back to me :(


Dr. Hanson isn’t at the NIH anymore, he’s now at Indiana University School of Medicine, head of a pediatric lab I think. Not sure what happened with our stem cells. Something tells me that got thrown away or lost or put on a shelf somewhere…

I’m not sure I’m going to do anything else, or try to reach out to him at Indiana. Right now I’m really not feeling well, the burning feeling I had when my infected port was in my arm has now moved to my arm pit, so I’m in the midst of this…

At the end of the day, research dollars are limited and there is only so many hours in a day that anyone can think about anything…I agree with what Dr. Kachru said a long time ago, it will probably be Noah in a lab one day with his own blood doing the figuring out. 👍

Noah has a good handle on how to keep his health as stable as possible, which is the main gift I was able to give him, the gift I wouldn’t have been able to give him if I had died in the fall of 2005…a lot of people have contributed to help keep us alive all of these years, and goodness knows the trail of thousands of pages of records may lead to something somewhere one day…

Thank you ❤️.

Noah made a beautifully innocent and naive comment to me recently, adamantly and passionately,

he didn’t understand why doctors don’t get excited about a case like ours, “don’t doctors go to medical school hoping to meet patients like us?” Made me laugh and smile…if Noah does make it through medical school, he’ll definitely be a great doctor. He learned from the best 🙂

Thanks again for everything,

Warmly,
Tara

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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

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Video of the strange growth on my elbow

I was wondering what you think of this wart like thing, it’s been there for a few weeks

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Back in the doctors office today

Back in the doctor’s office today, making sure my lip is healing properly. It looks a little funny, like it’s kind of white near the inside of my mouth, so I want to make sure it’s not getting infected. I figure it’s best to be safe and have the doctor look at it. Sometimes it’s hard to see in a photo—

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I should just live in an examining room lol

I guess I already do in a way 🤪👍

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The burning in my arm is better today, thank you ❤️

The burning where the port was taken out of my arm is better today. I think your instincts were correct, the burning was caused by the cholaprep I rubbed on it on Saturday that was stinging the wound. From the looks of the gauze that’s currently over the wound, perhaps I didn’t let the wound dry completely after I put on the chloraprep, and it probably causes the wound to sting by sitting moist in there all day…

Because it was feeling better, Noah and I didn’t take the dressing off and flush it…now it’s only stinging a tiny bit, but it’s mostly gone, so I’m hoping by tomorrow there’s no stinging at all. ❤️

Thanks again for everything, and I’m sorry for bothering you so late. I was worried that it was getting infected in a different way, I’m relieved it’s looking a wound care issue…

Warmly,
Tara 🙂

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Bad burning in my arm where my port was


Hopefully it will be a little better tomorrow, but the spot where the port was in my arm has burning pretty badly tonight, the pain starting to go up to my armpit.

The packing came out on Thursday and a bandage was put on. The instructions were to leave it on until next Thursday, then take it off.

The problem was last night the bandage came off when I was sleeping.

So Noah and I put on masks, and took a dressing change kit to put new dressing on it. We cleaned with the the cholera-prep (the same thing they used at the procedure center), and it stung a little. The wound had partly closed but not all the way closed. Noah seemed to think I accidentally ripped it open when I was disinfecting myself.

So I patted it, then we put the dressing on. It seemed ok, after the stinging wore off.

But tonight the burning is bad and I’m not feeling so good…I’m hoping tomorrow it’s better, I’m not sure what to do. Im pretty sure the port was infected in my arm for a few weeks, it might be festering in there pretty good. I’m not sure not sure to do another this burning.

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