A Missed Celebration........

 In my office, only 2 of us who have been present since the pandemic started have escaped contagion, me and one of the front desk staff.  

I didn't catch Covid from Babygirl last January despite being face-to-vomiting-face with her the entire time she was incubating. I was, however, masked for almost the entire event.

This time? The masks went on AFTER the diagnosis.  And here we are, staring down a positive test.

My sincere congrats to the last man standing. 

It isn't the sickest I've ever been. That honor goes to the Russian Flu while I was in college. And thankfully, the guy with the ballpeen hammer in my head has stopped banging around, for the most part. But those losers with the coshes who keep smacking me in calves and shoulder blades need to STAND DOWN. 

Also not a huge fan of alternating between shivering and sweating.

I'm pretty sure this level of fatigue and breathlessness going up and down a flight of stairs should more be associated with mountain climbing.

On the plus side, Babygirl isn't running fevers anymore.  She was up to cooking dinner yesterday, although neither of us could taste it. We are both sleeping anywhere from 1-3 hours for every hour of activity (which could be just unloading the dishwasher or reading a book).

So I'm on Covid Furlough until at least Tuesday, or until the respiratory symptoms clear.  If the number of tissues overflowing every wastebasket in the house are any indication, this could take a minute. 

DeeDee

PS The saddest part of this is that I was out sick on National Rubber Ducky Day.  And I had planned SUCH a celebration.

Round Two.....

 I think I had about a week.  One week.

I've spent the last two months agonizing over the fact that our long-term tenants were leaving. They found us lovely new tenants, and based on the timeline the old tenants were given, I figured that two months was plenty of time to prep the apartment for those tenants, in time for the New Year.  But due to multiple delays in their closing, we ended up with less than ONE month.  One month to clean and paint all the walls and woodwork. One month to set up some window replacements and a new kitchen counter. One month to refinish the floors.  I worked 8=10 hours a day on the weekends and 2-3 hours on working days. I had friends come in and scrub bathrooms. I had a grandkid learn how to use some tools to pull up molding.

We almost made it. The tenants holed up in a hotel for a couple of days, and we are finishing what remains while they are in situ.

The day after they moved in, my entire body just said, "No. Nope. Not today." I called out of work and slept more than 16 hours, a week ago today. I had nothing to do for the weekend, so I enjoyed doing exactly that. 

Earlier today, Babygirl sent me a picture:  "Is that positive?" 

Why yes, that IS positive. She has Covid. Again.  

Current temp on Tylenol is 101 degrees. That would typically send us to the ED, but we know the cause, and she is eating some and drinking pretty well. Curlygirl, who can't tell if she's sick or not because she ALWAYS feels Long-Covid Crappy, tested negative. I feel fine, so I didn't bother with a test. 

I'm so grateful for one low-stress week it's almost ridiculous. And to be fair, January this year so far has been MUCH better than January last year.  

I have to confess that I'm not too grateful for this.

DeeDee

Happy New Year.....

 All of this past 10 days, I've been reliving last year. You know, the way women mentally review their labor and delivery on their kids' birthdays every year (you don't?). 

Curlygirl caught Covid right before Christmas.  I came to her house and wrapped about a thousand presents for the kids, masked and at a social distance, of course.  Christmas morning was celebrated in their garage, since the kids had gone to stay with Gammy to avoid contagion.  Curlygirl's boo recovered. She still has not. Physically she is still doing poorly. Emotionally she seems to be improving.  Last night at dinner she was laughing about how people comment on how "good she looks" in her pictures.  She said, "I'm SICK, not UGLY!" That is one of the best descriptions of chronic illness I've ever heard.

Babygirl's crisis started right after Christmas, when what appeared to be a generic stomach bug turned deadly within a few days. 

By this time last year, Babygirl was on a vent with a feeding tube, central and arterial lines in, facing emergency dialysis. She'd already had her first two of what would be many blood transfusions.  And I was still thinking that maybe they could halt the rejection and save the kidney. And I'd had the best two hours of sleep in my life on the padded bench in her ICU room. 

Yesterday I was on the phone with our internet provider for well over an hour. The internet got turned off because our new tenants turned theirs on, and there was some confusion about which side of the house they were supposed to be working on. Since the new tenants now "owned the account" Spectrum needed their permission to fix it. This would be merely an inconvenience if we didn't need internet to run the dialysis machine programming. But be that as it may...

Babygirl expressed sympathy for the frustration. But last year, by lunchtime on New Year's Eve, we'd been in 2 ERs, had the express lights-and-sirens ambulance ride between them, been intubated and hustled to the ICU. I hadn't had a proper night's sleep in over a week, and was standing soley on adrenaline. 

Yup, I'll take conversing with the (oddly, extremely helpful) support staff at Spectrum all day any day over that. I did draw the line at switching to Spectrum as our phone provider. We've been knocked off the internet 3 times in the last 8 months for incredibly stupid reasons, so I'll keep my phone provider separate, ThankYouVeryMuch.

I'm glad to see 2022 out the door.  But, as always, I'm not making plans or resolutions. Things will be what they are, so I do my best to keep my mind blank about the future.  It's a far better alternative than worrying over what I cannot control.

DeeDee

When Crises Become Normal.....

 Babygirl has been doing home dialysis since just after Thanksgiving.  She has had some assistance once in a while from the dialysis team but has been largely independent with it all.  However, a couple of weeks ago, she began having issues with her needles clotting before she could get the system hooked up. She'd have to take everything down and start over or wait until someone from the team could come and help her.  Sometimes the team COUDN'T help.  

Ultrasound of the fistula revealed some stenosis (narrowing) that was likely impacting blood flow, leading to increased clotting. She needed to have a fistulogram and probably some angioplasty.

The nurses notified the vascular surgeon. "We'll get back to you." And again. And rinse and repeat.

She was finally scheduled but not until January 18th.  For someone who is supposed to be doing dialysis at home four days a week, and was barely able to manage two, this was....unacceptable.

Her nurse finally advised her to contact the other vascular surgeon (the one who works for MY hospital LOL) to see if he had any availability. I think she told Babygirl's usual team that we were going to do that, because before I could make the call, she was given two days' notice that she was bumped up to yesterday.  

I rearranged my work schedule, and we went to the hospital as ordered at 11 AM.  No preop testing had been done because of the short notice, so we had to have the Covid test, the obligatory pregnancy test, and a check on her potassium (since kidney failure patients frequent run very high, which can be dangerous with the anesthesia) and the current status of her anemia.  Everything was within acceptable parameters, which we knew by about 1:30.  It was nearly 5 PM when they wheeled her off to the OR.  

FYI: I will NEVER, ever get used to seeing her go.

She apparently woke up during the procedure (when I told her about it, she said "I thought that was a DREAM!), so they gave her some extra juice. Recovery took a bit longer than expected.

We didn't get home until after 7, stopping to pick up a sub for her and some Chinese for me. 

She's fine. The procedure was a success, and dialysis today went well.

But here's the thing:  I never let anybody know that there WAS a thing.  I mean, usually I tell the family, let the prayer chain know, put up a blog post or a Facebook notification, something.  I didn't even tell her sisters.  I've reached the point where this is just another day in the life, which is absolutely the lowest estimation of my mental health that I can imagine.

So, to all the family and friends who faithfully pray for us, keep praying. I'm sorry.  I'll do better, I promise.

DeeDee 

One Is NEVER Enough.....

 Babygirl is recovering nicely from the RSV. No fever since before Thanksgiving. Cough is.... less vomit-inducing. Since she was out of danger (as much as she ever is), I went without her to Brooklyn Saturday to see Citygirl and her boo.  Sincerely excellent bonus:  I got to spend the day with my niece, who SHOULD inherit the Citygirl moniker LOL. 

I arrived in time for a breakfast run.  We had some time to kill before Saturday AM actually opens up in Brooklyn (11 AM for most non-food venues, but we found a used bookstore open at 10!).  We did books. We did an amazing salvage store.  We did another thrift store, and then we headed to our main event.

Shuffleboard.  

I confess that I have a friend in her 70's who plays and says it's fun.  I've never had the pleasure.

The business had a bar with drink specials and bar food.  The booths were set up to look like cabanas. There was flamingo wallpaper and a stage full of flamingoes (with a sign telling us not to DUCK with the flamingoes). And there were 10 or so shuffleboard courts? Lanes?  I DID learn that what I would have called "pucks" are actually called "biscuits."

I had two espresso martinis while playing my first round of games.  I had to switch to caffein-free and went with rum and pineapple. I am 100% sure that this improved my playing skills dramatically. (HEY! Let me remember it how I remember it. 

We went to Citygirl's "AirBNB" and had wine and pizza, and played a couple of rounds of Taco, Cat, Goat, Cheese, Pizza.  I did NOT win but I was also not injured, so......I call that even.

Sunday, I rode with  Citygirl to her Dad's place in Middletown and was treated to a lovely authentic Indian lunch. The drive from there to home was supposed to be about 1 hour 40 minutes.  About half an hour into the incessant rain, Google kept updating the length of my trip to, well, 1 hour 40 minutes.  I swear, I was 30 miles from home before whatever accident on I-81was upsetting Google before my arrival time began to look more promising. I got off early and took another route around the problem and was home 10 minutes later that originally guestimated by Google. 

So what, may you ask, besides espresso martinis and other day drinking delights, does one apparently always need more than one of?

Viruses. I awoke this morning with a cough and sore throat, and was winded in the time it took to get from bed to potty, about 15 feet.  I'm assuming it's RSV, I mean, massive exposure, right?  

I knew I would fail the Covid screen for work, and testing wouldn't be ready until tomorrow, so I'd miss more than a day of work if I didn't do something proactive. I went to the ED. Generally, 6 AM isn't too busy, right? Nah, we are in Flow Condition Red, and the leftover non-emergent crazy people are wandering around, yelling, complaining and generally making the few people remaining in the waiting area either entertained or uncomfortable, depending on viewpoint. 

Eek.  I did get triaged promptly, and respiratory panel, blood work, EKG and chest x-ray ordered and done (I'm OLD. And diabetic. Shortness of breath was respected, thank you).  The doc came in (different guy than Babygirl's) and said, "Wanna place any money on what it is?"  "RSV" He looked a little surprised that I was choosing something so.... sophisticated?  "Nope! It's parainfluenza virus." 

In plain English, I have Croup.  He gave me a shot of Decadron (SuperSteroid) in the arm. Blood work, x-ray, EKG all fine. Employee health took a look at the whole thing and cleared me to go back to work today.  All my patients had already been cancelled, so I'll work from home tomorrow and go back to the office Wednesday.

I kinda like Decadron.  It hurt like a BEAST for a few minutes, but then the breathing magically got better. I was home about 2 hours after I arrived, because I never needed to be in a Room - I got diagnosed, treated and released from the waiting room.

Where are we getting these things?  I'm just calling this another case of Grandma Flu. 

DeeDee

Thanksgiving Quarantine.....

 It's been a long week.  Month. Year.  

Babygirl's acute kidney failure. I'm working through a divorce.  We need a new roof. My tenants are buying a house, and I need to do some serious work on the apartment before new tenants can move in. AND our furnace just died, and we don't get a new one until tomorrow.

Oh, and one more thing.

Babygirl caught a cold about a week ago.  Typical symptoms, feeling crappy but not ill, until Monday.  She sent me a text from dialysis:  "I'm getting a fever. Temperature was 99.8." Typically, she runs about 97. But I know the rules:  "over 100.4 we go in."

She got up to 100.8, but didn't initially say anything. She thought I meant 104 degrees. We cleared that up.

We hit the ER at 6:15, plus or minus. The put her in a private waiting room, but I wasn't allowed in until she had a Room.  Ah, no worries.  Snacks in the doctors' lounge, a nap in the massage chair in the Wellness Room. When they finally actually took her vitals, her temperature was 102.4.

These days when you go to the ED, the triage nurse has the ability to assess the situation, and order whatever tests match the patient and the symptoms. For someone like Babygirl, this would usually be the "Sepsis Workup."  Labs. Cultures. X-rays. They did not do this. They swabbed her throat and did a respiratory disease panel.

We got to a Room about 3 hours after arrival.  The doctor came in, all excited, and said, "You have RSV!  We know what is wrong with you, so you can go home. Did you get the ibuprofen I ordered? That will make you feel a lot better!" The look on my face must have told him something.

"You know, Doc, she got winded taking off her T-shirt and putting on the hospital gown. Also, she's in kidney failure. She CAN NOT take NSAIDs. Her transplant is still getting rid of water and potassium, and keeping her from a lot of miserable diet/fluid restrictions."

He was unaware that one can need dialysis and still have partially functioning kidneys.  I was not surprised by this. If I had given it a moment's thought before Babygirl's diagnosis, I might have thought the same.

To his credit, he took a better look at her.  Examined her, even.  And ordered the sepsis workup. 

Fortunately for us, it was all negative except for some diagnosis-expected bronchial swelling.  We were home a little before 1 AM.

But there is no treatment at all for RSV. It can and does kill babies, the elderly, and the immunocompromised.  And because her immune system can't fight, she needs to stay in her "bubble" for a full month - about 3 more weeks, so she doesn't spread it to the babies in the family.

Today is the first fever-free day. The cough remains appalling.

I have to say that this acute illness has been....grounding. I had quite literally reached the point of bubbling pre-hysteria. A kind of What the Everliving DUCK is my life right now? But Babygirl got sick and is now getting better. The rest is just.... stuff. Hard stuff, but stuff nonetheless.

So here we are, celebrating gratitude for, well, everything. The house is pretty warm today because we have an oven that works and a turkey (that we were supposed to take to another dinner with family), in a roaster in the dining room, adding more heat. I taught Squeaker (who was the bringer of "the cold") how to make homemade piecrust, and the magical chemistry of pumpkin pie. Babygirl made apple crisp from the last of our "Family Apple Picking" supply. 

Home dialysis equipment arrived Wednesday.  I sign for a home equity loan to get everything done on Monday.  I had enough money to pay for a furnace, when a large percentage Americans can't find someone to borrow $500 from (true story.  Someone did a poll about this).

There is a sign in my dining room that says, "Gratitude Changes Everything."  

Yes. And amen. 

DeeDee

The Long Covid Situation......

 As I've obliquely mentioned here and there, Curlygirl has been having issues since her Covid infection in December.

Until she got sick, she was working full-time, raising 3 kids, and updating a recently purchased home with her s/o.

Yes, she had 2 Covid vaccines without obvious side effects. No, she did not have boosters. 

Her s/o was sick at the same time. He had almost no symptoms and recovered entirely within a very few days.

She had mild initial symptoms, with no loss of taste or smell, no cough, no fever.  But within a few days, the shortness of breath began with some mild drops in oxygen levels and a lot of chest pain. Dizziness, blood pressure fluctuations, rapid heartbeat, fatigue, increased sleep, head pressure, body pressure, numbness, tingling, and a sensation of muscle heaviness when standing, imbalance all followed. She has been unable to work since this started and has moved in with me. Her kids live with their fathers.  She feels like she has lost everything.

Of all of this, the shortness of breath is really the only symptom that has improved. 

She has seen pulmonology, cardiology, 2 neurologists (the most useless specialty by far). She has been in the ER no less than 10 times.

Pulmonology gave her some inhalers. They helped and she no longer uses them.

Cardiology diagnosed her with POTS (Postural Orthostatic Hypotension Syndrome). This is autonomic nervous system dysfunction (dysautonomia) common among the post-Covid population. Treatment for this has, to a degree, stabilized the blood pressure and heart rate. The benefit of this is that she can stand up most of the time when she needs to. Missing doses of medication can lead to some severe symptoms for her, so she needs to be pretty religious about this despite the side effects.

She is in contact with a large number of online Covid groups. and has been given tons of conflicting advice. 

She has had online contact with a Lyme Literate Doctor (by the way, there is no certification for this, and some of them are quite dangerous. Hers appears to be one of the safer ones), homeopathic providers, naturopathic providers, Functional Medicine providers.  She has been told that the Covid reactivated a previously undiagnosed Lyme infection, and that she has reactivated EBV (Epstein/Barr virus).

She has had bloodwork done as ordered by many of these providers, several hundred dollars of which was known in advance to not be covered by insurance.

We checked out a Lyme treatment center near Boston. For $10,000 dollars she can undergo treatment for Chronic Lyme that includes proprietary saltwater foot baths to remove toxins from the body via the feet; time on proprietary vibration platforms with oxygen to improve muscle strength, balance, and to kill the Lyme with increased oxygen. In addition, proprietary glasses frames with blinking lights aimed at the eyes concurrently used with proprietary laser pointers aimed according to an individualized map at various areas of the head.  The clients in treatment there all professed great improvement. The chiropractor giving us the tour couldn't give me stats on actual recoveries, nor could she look me in the eye and tell me that she didn't recommend treatment to nearly everybody who showed up, even those with multiple symptoms and totally negative Lyme tests.  The frequent use of the word "proprietary" set my teeth on edge.

She has followed protocols, diets to decrease inflammation, to decrease histamine, and diets to avoid "feeding the EBV virus."

What about a Long Covid Center?  Or a Covid Recovery Center? 

We went to the Long Covid Center in NYC twice.  The cardiologist has been wonderful. The rest, not so much.

There are 3 Covid Recovery Centers in NY state. One exclusively deals with pulmonary issues. The other 2 offer post-Covid PT. Boston won't take patients outside of New England. Johns Hopkins takes Maryland, Delaware, and Washington DC. Penn State takes PA patients only. I haven't checked Cleveland, but that's 6 hours away.

Estimates from good studies show that anywhere from 10-50% of post-Covid patients have long term symptoms, almost completely regardless of the severity of the original infection.  Vaccination reduces but does not eliminate risk of infection.  It also reduces but does not eliminate risk of long-term symptoms. 

The US population is over 332 million. Number of infections, 90 million.  Let's low-ball that number since quite a few of those are re-infections and say, oh, 60 million.  That means that anywhere from 6-30 million people have some form of Long-Covid issues. Of those, about a third are symptomatic enough to struggle to work, and many cannot work. 

Why So Many Long COVID Patients Are Having Suicidal Thoughts This thoughtful Time Magazine article discusses the immense difficulty these patients are having with finding help for their issues. 

I'm a DOCTOR, for the love of all that's holy. And I. Can't. Help. Her.

So that is why we are currently in an adorable 50's motel in Sarasota FL. She is getting 6 hours/day of cold laser and infrared therapy, and I'm getting a few hours a day of beach therapy. Cold lasers have been in use for joint inflammation for a long time. There are protocols in use for Long Covid in Toronto, but most are not covered by the Canadian Health service, so there is that. 

Keeping someone from killing themselves shouldn't be so...opaque. Helping people with a long-term post-infectious syndrome should be something that is getting more reasonable research. 

I feel like I am stuck again in that horrible window back in the early 80's when HIV was a thing, but "And the Band Played On" was the response.  

DeeDee