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I’ve been in the hospital for the last 10 days in a pretty serious condition.

My last Hickman Port (also called a Central Line - like an IV in my shoulder that can last for years) got infected with a bacteria called Staphylococcus Aureus that causes blood clots, which formed and then spread to the right atrium of my heart!!   😭🤯😞💔💔 And then they spread to my lungs from there as well.   😭 It all feels awful emotionally, they feel like invading foreign bodies, but the clot in my heart really upsets me and feels evil - like my body has been invaded by an alien and I need an exorcism.

The only upsides are that the clot in my heart was clearly deposited there from the Hickman Port because the port empties directly into the right atrium and also, if the blood clot moves out of my heart it will go to my lungs, not my brain. Yay?   😒 It’s not good, but it’s better than my brain for sure!

I’m taking a targeted antibiotic for this specific bacterial infection along with heparin (a blood thinner) and hoping the clots will completely disappear with the help of my immune system. And then I’m going to have to get a new Hickman Port and risk it again because I need IV fluids or my body literally just falls apart in a cascading avalanche of MCAS, dysautonomia and nervous system dysfunction.

One pleasant surprise has been how attentive and open the Stanford Hospital has beeen to ME/CFS. The doctors here have talked to my ME/CFS doctor multiple times and actually taken his advice. For example, they listened to him about getting a specific steroid before a contrast CT Scan so the contrast didn’t make me worse as it often does to ME/CFS patients. They actually listened and gave me exactly what my ME/CFS doctor recommended in the exact way he recommended it.

There is still a lot of bureaucracy and things I would like to see improved for patients with ME/CFS, chronic illness and complex illnesses. It’s a big hosptial and it’s designed to work well for something like 80%-90% of patients who come here, but when you are part of that 10% with a chronic illness or complex illness and your needs don’t fit into the system, you have to fight that system to get your needs met. And I think this is something that medicine needs to improve on - making sure the needs of that 10% are met. I would like to see, for one thing, a team devoted to chronic and complex illness (alongside infectious disease, etc) who are well versed in the needs of these patients and could advise patient’s doctor teams on special needs/requirements for these patients.

But my experience overall has been above and beyond my horrifying expectations.

And they just renovated a whole floor of rooms and I was blown away to find how ME/CFS friendly they are! They even have huge windows with 2 levels of light blocking blinds operable by remote and mind blowing views of the sky that have been breathtaking for me after the same view in my room for 15 years. There are only a few small tweaks needed for these rooms to be 100% Severe ME/CFS friendly. Which makes me think "If they can do this by accident, why can’t the rest of the country make ME/CFS friendly hospital rooms and housing and emergency care wards, etc like we all so desperately need - on purpose? If it can be done by accident here, it can be done with intent worldwide even better."

So I have not really worsened from my stay here, which has been a huge surprise and blessing that I was not expecting at all. And something I want all ME/CFS patients to have access to by law so we are able to get the care we need.

A big part of me is really sad about this setback because it is a whole host of medical problems that I did not even have 3 weeks ago, which will now be on top of my previous ME/CFS symptoms I’ve been dealing with.

But that’s life and that’s ME/CFS. It’s a constant up and down, we can never take anything for granted or we quickly find how transient our lives and health are; what we thought was a concrete foundation can be gone in an instant.

This isn’t the follow up video I was planning on making. My last video was about a miraculous improvement in talking again after 12 years not talking, and now I’m in the hospital with a whole new set of health challenges.

But then at the same time it’s exactly the follow up video I was planning on making. Because I’m not planning on showing you a hollywood, maked up, caked up, airbrushed, facetuned version of ME/CFS. My videos and writing will always represent my honest experience and thus hopefully be a reflection of many of your experiences as well.

ME/CFS is not a magic pony ride. We make improvements and then shit happens and we have setbacks. Anyone who has had ME/CFS for very long has experienced these ups and downs.

But we all hang in there through the lows and unexpected new hardships because we know there will be improvements in the future and moments of love and light that make it all worth it.

Hang on everyone. For the unknown beauty that awaits you that you can’t even see yet.

Love, Whitney  

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PART 2: At Home

I’m back home from the hospital and want to add one more update to this video mostly so you know that I’m not at the hospital right now. I’ve been home for about 5 weeks, but really not doing well after an abusive discharge that was really a plot twist after the great care I received the whole rest of the time. I’ll be making another update about what happened because it’s a bit shocking. Plot twist! So stay tuned.

I was doing so much better than I expected at the hospital, I was expecting that being in the company of other people (my mother or sister or cousin were always there and i usually couln’t resist talking to them) would make me way worse along with all the nurse visits and other stimulus.

But somehow I didn’t crash there and seemed to handle the huge increase in human contact really well. And I was really hoping I had discovered that I was more capable of human interaction now and would come home feeling better. Or a bunch of adrenaline kicked something off in my system and actually helped me (I know adrenaline hurts many of you but it can help me in specific situations).

But either because of the way they force discharged me in the middle of a crash or because I was in fact just riding on adrenaline the whole time there, I’ve really been doing poorly since. Severe migraine auras that leave me incapacitated and very low mental and physical energy that keep me from doing anything like getting this video posted   😊 and feeling really depressed from spending week after week mostly just laying here listening to really gentle ambient music and staring at the wall unable to act on my thoughts or ideas. You all know that feeling too well.

I then had to return to the hospital for 3 hours for an outpatient exam (no overnight stay) to do a repeat test called a TEE that looks at your heart from inside your throat where it can get a better view. And the blood clot in my heart is completeliy gone now! No idea if it melted or moved to my lungs, but it’s still good news. No more alien!   😆

Stay tuned for more videos about my hospital stay and hopefully I can figure out the post processing with captions in a faster way, so I can share new ideas and experiences!

I’m soldiering on and hoping for better days ahead, just like all of you. There are so mamy dreams to work for and fulfill.

Love Whitney  

Note #1
Since someone will say it, no i did not get preferential treatment at Stanford Hospital because my father works at Stanford, no one made the connection and we did not ask for it. I was just lucky like the other patients assigned to that new floor.

Note #2
Part 1 at hospital recorded: 1/9/26
Part 2 at hospital recorded: 1/10/26
Part 3 at home recorded: 3/16/26

My health has been worse since the hospital and it's taken me a long time to put this post together in little bits of activity   🙏