I just spoke with Dr. Pitchon — 400 out of 930 beds at Cedars are Covid patients

I just spoke with Dr. Pitchon, he said everyone must stay away from everyone else right now. With almost half of Cedars filled with Covid patients, the situation in Los Angeles is absolutely critical, and they’re expecting things to get even worse…

Dr. P said we have to think of Covid as being everywhere, behind every door, at every gas station, on everyone’s clothing,

the situation is absolutely dire 😢.

He also said Cedars still hasn’t announced publicly a plan on how they’re going to vaccinate regular people yet, they’re still trying to get through all the medical people…

It’s really nerve wracking because I have a few medical problems brewing (like the mass in my breast), and I’ve got to hope everything is going to be okay to wait a few months…I really don’t have a choice right now. I’ll repeat my breast imaging students in a couple of weeks and then reevaluate, but I’ll not sure anyone can do anything with the hospitals full.

The good news about the clots in my arm is that they’re chronic, so they’ve been there for awhile and he doesn’t expect them to break off or bother me in any way. He’s going to change my antibiotics to see if that will help reduce the burning, and I should repeat an ultrasound on my arm in a few weeks to make sure they’re not getting bigger or whatever, but he doesn’t expect them to become life threatening or anything like that.

(But I cant help but worry about them a little bit though…another thing to think about 😦

How are you doing? I hope you’re doing okay…I miss you tremendously, I hope life will be more stabilized by summer…

Love,
Tara

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In turns out I do have blood clots in my arm — what should I do now?

I hope you’re having a good holiday weekend 🙂

Your instincts were totally right, the reason I’m feeling so crappy over the last couple of weeks is because I do have some clots in my arm — I remember you said if I had clots I needed to get them removed, how should I do that?

(Can we send the clots to be cultured as well? I have a feeling it’s probably going to grow the same bacteria that infected the port that used to be there, but I’m sure if there’s something else going on —)

Over the last couple of weeks, I’ve been getting dosed up on my Ig, so I’ve been feeling better the last week…I’m hoping getting dosed up on the Ig along with the oral antibiotics will be enough to finally get over this hump ❤️🤞👍.

Thanks again for everything,

Warmly,
Tara 🙂

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#CovidWarrior

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On my way to Cedars for the ultrasound on my arm….

Ahhhhhhh

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What it means to be a bad stick 😢


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I’ve been stuck over 15 times by 4 different nurses (in two different countries!)

and still no one can get my IV started 😢.

The nurse whose known me for 15 years is going to come back again tonight and try again,

this time I’m going to sit in a hot bath and we’re going to try putting the line in the bathroom…

Thankfully tomorrow I should be able to contact the Procedure Center at Cedars and get an appointment for a new port…

I’m not sure if Joseph is going to be able to get me tonight, because I’ve run out of so many potential places to try…this might be a failed mission before we even get started because so many of my veins can’t even be touched right now…

I hope you’re doing well and staying away from everyone!!! I’ve bought disposal rain ponchos, in addition to all of my normal gear (googles, face shield, gloves, masks, etc), to wear when I go to Cedars,

but this virus is so tricky it’s hard to say if that’s going to be enough. Noah and I have heavy duty carbon air filters set up all over the apartment, and I’ve instructed him to stay away from me and hide in his room, and when I’m in the common area of the apartment inside I’m in a mask all of the time…

It’s a brutal time to have a serious health problem, so please stay inside and don’t go anywhere. I feel bad for people who are in accidents or heart attacks, in a week or two they’re not going to have enough ICU beds for anyone…

You can not be strick enough right now…I think people are in denial what it means for a city to run out of ICU beds…no one should be going anywhere because unplanned events and accidents happen all the time…

Love,
Tara

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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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