The FH Covid saga.

 The FH Covid Saga

Just a part of 252W. huge single

This will be a long blog. Perhaps as long as the Torun one. And graphic in details.

It is sort of a stream of consciousness so much is written as it happened. After the fact. I was making

notes on my cell phone note app as this was going on. I did not start drafting the blog until a day or

two before I was discharged from the hospital. Shortness of Breath is abbreviated as SOB. (could as

well be son of a bitch!)

 

Going back to the start of it, mentioned at the end of Torun blog I am severely immunocompromised

from the treatment of 2019 stage 4 Mantel Cell Lymphoma and ongoing quarterly infusions. When

indoors in public I always wore my N95. I never ate out.

Then came the Poland WMA indoor world championships. Made it all the way during the trip there.

Angela and I met up in Amsterdam for the flight to Warsaw and several hour shuttle from there to

Torun. I detailed the first night and then day of competition March 26. Mine was outside in the cold

and off and on rain. Angela inside doing the 3000m.

The disaster happened that night at dinner. It was Angela. and Barbara at the far end of the table, Cora

Hill on my left then Sandy (Speedy Lee) Triolo joined us sitting by Angela. I put rhe table vase on the

chair to my right. We had ordered and maybe some food had arrived when a 79 year old mom and her

daughter arrived after many airport changes etc. Unfortunately for us they joined us, with the daughter

taking the place of the vase. I was eating so maskless. The daughter and I talked then she left early

and none of us saw her again. She stayed in her room, mom saying she had a bad cold..

Everyone at the table, except Angela and Barbara sitting farthest away, got Covid because of the

daughter –mom still saying just a bad cold. My ass! Angela and Barbara were sure the daughter had

Covid. (Angela a retired Nurse Practitioner)

The mom had a 400m prelim the next day. We commented how badly she ran. Slow, especially for her.

I will refer to her as H – which is where the FH comes from, F being a vile curse word.

Other than for my left knee, I felt okay. Until I got back home to Raleigh, arriving home just before

midnight April 2 . So Monday I was tired. When I began to get chilled, thinking of the damn dinner, I

decided to take an At Home Covid test. I was pissed that it was positive, knowing the danger I was in.

since severely immunocompromised (worse than I knew until in hospital and my oncologist stopped by

and told me of how 2019’s chemo had suppressed the creation of immunoglobulin (which he then had

infused while in the hospital)

I posted on the Team Whatsapp so others would know my positive Covid and that is when the others at

the table tested and found they too were positive, except Angela and Barbara. The mom oh she was

surprised she was positive but only had 4 days of a COLD. She said the daughter was negative. Sure –

because she was positive in Poland. We don’t know if she tested there, but on march 27 the mom tried

running a 400m heat and ran like a slug. Despite being with her sick daughter, the mom stayed until

the end of the Meet, running the last mixes relay.. They returned to Warsaw on a private shuttle rented

by one of the male competitors.

The Covid experience.

So now begins the horror of my Covid experience. I tested negative on April 10 and 11. after having

taken Paxlovid prescribed by my PCP when I notified him on April 3rd in the morning.

Negative on april 10 & 11

A few days

later I began going 2 + mile walks on a greenway which entailed going downhill to get to the trail then

at the far end resting on a bench gasping, before turning around to return.

One day it began raining. A lady came by and said she would drive me back. No thank you I said. It was a long walk back. There was another bench just before the short path leading back uphill to the street, also uphill.

I had begun coughing a lot and my sinuses kept filling and draining. Endless. The coughing worsened

as did the sinus draining. I began to feel nauseous at the thought of food.

Subsequent attempts to walk outside got worse until the last one. The SOB was far worse. dreading

that uphill. While sitting on that bench, having terrible SOB, waiting for it to subside before attempting

the rest of the walk home I raged, cursing the mom who said she just had a f-ing cold and insisted in

Torun that her kid only had a cold, while carrying meals up to the room. I can’t tell you how angry I

was as I gasped. That began my FH reference. I had not felt such rage in forever. I knew she was

killing me. Ironically, I was not raging at the daughter, but at her Mom. I got home and never took that

route again. 

But things got so much worse that even a short walk from home was bad enough that I

wanted to sit on the curb because the shortness of breath was too much. I stopped going out. In the

house, I was having the same problem. I lost my appetite and turned away from the TV food related

commercials. One has no idea how many of those there are.

One particularly memorable outing was to push the huge green garbage can up the driveway to the curb for Tuesday after Memorial Day pickup. I would go just so far and have to stop, leaning on the top of the can to catch my breath.  When I got it to street level I just rested my upper body on it because I could hardly breathe.  It took a long time before I took the slow walk back to the house.  FH!  

During this time I did not want to respond to texts or phone calls. I did not want to talk about it. Or

have to repeat the same info to multiple people. I only communicated with Angela and Barbara via text.

So I ignored phone messages and texts. I wanted to be a turtle hiding in my shell being left alone.

I began eating only jello which I could tolerate and sliced peaches from a jar, plus drinking water. But

to do so, I had to get out of the recliner to go into the kitchen. I would sit there, working up my courage

to try to walk because any exertion made the breathing very difficult. The only time I could breathe

okay was when I was in the chair.

I had a scheduled port flush at Oncology on May 9th. Oxygen saturation was 93 at the time. I was still

coughing but tried to control it. I told them I had had Covid. Because of my coughing, the PA ordered

an Xray, which I had two days later on May 11. My follow up Oncology visit was Tuesday May 16.

The PA told me the Xray had indicated I had an infected lung. She did an oxygen saturation check. It

initially was hovering around 84 to 85 but settled at 90%.

Oxygen saturation, or "O2 sat" for short, is a measure of how much oxygen is in

your blood. For most healthy adults, a normal oxygen saturation level is

between 95% and 100%.

An oxygen saturation reading below this requires medical attention because it

means your body isn't getting enough oxygen to function properly.

She also took blood to see if clots. She said if my condition gets worse, I would need hospitalization.

 For some kind of infusion. Oh No! Not that. She prescribed a 5 day Zpack of arithromycin plus twice a

day Amoxicillin for 10 days. That night my oxygen Sat was 82-84. She also prescribed anti nausea

pills because I needed something even before eating jello. SOB is a symptom of low sat (hypoximia) as

well as coughing.

May 17, my O2 Sat was 79-80. I had begun testing using my pulse oximeter. I tested a few times a day.

My oncology PA was concerned. She added steroids prednisone to take with the Amoxicillin, hoping

to speed up recovery. My values while at home ranged from 84-87, with one evening 79-80. a low of

77 one morning. 80-81 tended to be the result. I had not been able to come up with a sputum sample

when at Oncology May 16th but finally did on the 19th. What a horrid walk from the parking lot up to

the oncology floor’s long hallway. I hated that walk. I dropped off the sample on that Friday. The walk

back down the hallway to the elevator was not pleasant.

Susan called on Monday the 22 saying the sputum result showed yeast and strep in the lungs so stop

taking the Amoxicillin. She was prescribing two new drugs and I should feel better within three days of

starting them. Fluconazole for the yeast – two a day and sulfamethoxzole twice a day for pneumonia.

After three days I was not better. Nope. SOB got worse, coughing continued. 

I would sit in my chair and dread getting up to try to get to the bathroom where little happened or the kitchen for juice for water.

Eating was no good except for jello, swiss cheese and mandarin orange slices. Anything else I tried got thrown out. TV food commercials made me sick and I would turn away. My oncology PA said if I felt faint or as if I would pass out I needed to go to the ER. She said I would get better faster ifI went to the ER. I did not want to be hospitalized. The small fridge I had ordered to keep near the recliner so I would not have to walk to the kitchen arrived and was left near the front door. It is still sitting inside in the hallway unopened because that is when I began falling. I had one foot in the house and the other outside the door. I leaned over to pick it up-- it is lightweight but that is

when I first fell, ending up sitting outside the door trying to catch my breath. FH! Would I be able to

get up? Eventually the box and I got inside and I knew with my SOB there was no way I would even

try opening it etc, and so there it sits.

I ordered a Subway one day. I ended up throwing more than ¾ out. I could not eat it. I discovered the

convenience of Instacart, ordering everything (jello ec) from nearby Harris Teeter. I would not go out.

The groceries were left at front door. I had to work up mentally to get to the door. Meanwhile, I kept

saying F-ing H. This became a mantra, and frequently used when exerting self.

Each day I would test oxygen sat a few times. Always in the low 80s. One morning it was at 77.

Angela was frantic that I go to the hospital.

The next fall was when I tried to get out of the chair and fell forward landing on a dog cushion with my

head crashing partially into the TV stand. It took a very long time to move back to the chair and hard

to get back into it. FH!

Now it is memorial day weekend (Oncology PA and Angela and Barbara Warren wanted me to go

immediately to the ER.) The next to last fall was when I stood to turn on an upper bulb on the adjacent

pole lamp. I and the pole lamp crashed down, knocking laptop etc off the adjacent stool and stuff from

the top of the narrow bookcase near the chair. This was a bad one. The pole lamp could not be stood

up upright and currently is leaning against that bookcase. Fortunately, the laptop survived. Again, it

was hard to get back up as I fell on the pole lamp. So, there I am on the floor. I managed to drag

myself to the chair. Getting back into it was far from easy. I think this was the Sunday of the

Memorial Day weekend. I did not tell Angela about the falls.

So now I feared any attempt to get out of the chair. But Monday I had food delivered which included

one bag of cans and a large bottle of Leaf ice tea not the the small bottle I thought I had ordered and

another bag of frozen food. I was carrying the heavier bag when almost into the kitchen my balance

went. I dropped the bag and fell backwards into the kitchen, next to the dog crate.

While lying down I emptied the bag of the cans etc and left it all on the floor in front of the crate.

When I geared up to go get the frozen bag, I dragged my butt down the hallway and the frozen food

into the kitchen on my butt. But then what to do. I managed to get the stuff up on the edge of the

counter. It took awhile before I tried to get myself up by grabbing the edge of the counter past where I

had put the food. I got the stuff in the fridge. FH!

That is when I decided it was time for the ER and would go in the morning.. BTW, laundry I did I just

took out of the dryer and threw on the bed. SOB etc ensured I would do no more than that. I had taken

a shower a day or so earlier – SOB bad when done.

Tuesday I ordered an UBER for the trip to the ER. That meant walking up the driveway with difficulty,

getting to the mailbox where my stability gave out and I sat on the curb. The wonderful Uber driver got

me up and into the car and got the ER people to get me a wheelchair.

The hospital experience and scary initial diagnosis

When I got to an ER cubicle, lots of dialog and blood draws..One nurse tried three times to get

arterial blood from my left wrist. Never got it. Put on oxygen. (during my stay there they kept asking if

I used oxygen at home! – No. Why would I have) The pulmonologist thought I might have had a stroke

so ordered a scan. I would not be allowed to eat or be admitted into a room from the ER until the scan

was done. (that did not happen until 01:30 friday. ) I was really concerned. What would I do then? They

did a lung xray and then a scan. The lung scans revealed I had CLOTS! F-ing Covid clots. FH!

white streaky areas the clots etc

In reviewing the hospital notes I see they admitted me as having acute respiratory failure, hypoxic 82 -

83 % (oxygen saturation value), ataxia (impaired balance issues) , DVT in lower left leg. Plus the

Covid they discovered.

In the meantime, Angela who lives 2 hours away came down to take my dog to the Vet’s for boarding.

The dog loves it there and they her. I waa surprised when Angela showed up in my ER cubicle. They

swabbed my nose and then came back while Angela was out of the room to tell me I had Covid again!

My crappy immune system had left it lurking. I thought I texted her but apparently not. I told her when

she returned to my cubicle. Since she had been near my head, giving me a hug, the pulmonologist

who had witnessed that called her while she was still in the ER room with me to tell her I was Covid

positive and she needed to take precautions. I thought that was quite impressive! She wanted to miss

the 5 o’clock traffic but I got her out of there around 5:37. She did not get home until 8. . By then it

was too late as she had hugged my head. (She did not get Covid but had to wear a mask and keep

distance from husband and visiting daughter.. Again, I say FH!)

Incredibly huge corner room. Two windows, one at far wall opposite the bed that looked out onto

hospital walls and the other to the side of the room that looked out to the HVAC units and in the

distance Tryon Road. Around June 4th PT and OT began having me use the walker while they

monitored my O2 Sat. 88 was not good. They wanted it up into the 90s. When I first began using the

walker, I was flat footed. My foot did not bend. A very strange feeling. For sure even with the walker I

walked like Tim Conway. She would walk me to one window and then the other 2 or 3 times then back

to the bed (or chair if I had been in the chair.)

Jun 2 admitted to wakemed

June 5 - 2 days before discharge

The IVs were for Remdesivir for 5 days for the Covid, heparin for clots, etc. Dexamethasone steroid

for clots (this brought on diabetes since affects insulin production.) Breathing therapy 3x a day –

inhale stuff 10 minutes three times a day then down to 5 as days went by. coughed up some sludge.

Every time one of the infusions needed attention it would beep. There were lots of beeps. A few times

right after the nurse had left the room. 

Infusion pole June 6 - day b4 discharge

Infusion pole June 4th

Antibiotics added to infusion. On about 2+% oxygen and

constant heart monitoring. Blood draws several times a day and night to check levels of magnesium,

heparin, gluclose and basically a full CBC. Then there were the multiple times a day and night BP

checks ,O2 saturation check and the toughest of all – my temperature! We had more trouble getting

that than anything else. Normally it ranged between 97 and 99 - once 102 – after the second time the

IV needle was knocked out and blood all over me and floor.

The IVs were initially in my right arm but one day while trying to eat, it pulled out with blood going all

over the bed etc. The IV needle was then put into my right hand, one nurse, a specialist in inserting

into particularly hard to access veins, Jung, managed to get it into a vein on the side of the hand. Being

somewhat depleted in terms of liquids, my usually popping veins were quite flat.

My oncologist ordered infusion of IVIG ( 1g/kg for a day then a second day ) to bump up my

immunoglobulin by 600 to 800 (inhibited by 2019 bendamustine chemo treatment). The

immunoglobulin should help boost immune system. After the infusion my IGG was at 2589. The

normal range is 635 – 1741. With my depleted system more is better IMO The oncologist said the

Covid was the cause not only of the clots and SOB but also of the loss of balance issue. FH! The

Rituxan last administered in February won’t wear off until the end of the year, hopefully normalizing

my immune system (with, of course, the possibility that the MCL will return. Can’t have every thing. I

am a very lucky person.)

One night the beeping re drips needed attention then light and alarm flashing outside of door. Fire

alarm. Nurse said sometimes caused by popcorn.

Can’t poop and had to be catherized. Not good. Can’t sleep – not because of blood draws and BP etc

monitoring. Just not tired.

June 6. PT etc wants me to go to rehab after discharge. NO! Will go home. Could dress self during my  worst times.

So can do so now. Will go home with walker and cane. Contingent on pooping. May need to go home

catherized – ugh. Then what? Remove myself? Hope I can pee on own before leave but have been

catherized for days.

I had to use their chair potty because the power cord for the pole with all of the IVs was not long

enough to allow me to get to the bathroom. I did not get to enter that until the day before discharge.

What a glorious change.

Spoke to PT case management. After told her the exercises I do at home – raising legs and had run in

Torun, she agreed I did not need rehab or home PT. I could always call if need. YAY.

Amended to go to nearby wakemed PT outpatient facility a few times a week for therapy and

monitoring. Ten visits are prescribed, two a week. That will take me into the week of the Outdoor

nationals. Though I have signed up for the field events, I have my doubts about it.

Darn steroid caused glucose issues requiring testing at home. Better no need for insulin injection.

After being on cath it may take a while for new pee to accumulate enough to see if can pee on own.

Whie catherized, my urine output would get to 700ml and then the bag would be emptied. They tracked

how much was eliminated each day. I skipped dinner 3 nights. They fed me SO much breakfast and

lunch. Me, who had been existing on jello now had meals with meat, vegetables etc, unsweetened iced

tea or coffee, and usually a dessert of some type – pineapple chunks. I was so stuffed and nothing was

being eliminated so I blew up. Refused dinner twice and then the PT person suggested a grilled cheese.

Sounded good but was too late to get in order by 3pm so that was anther night skipped dinner.

June 2 lunch pork rice carrots

Here is a list of the meals -- all good, btw, but too much! I never ate the banana

Jun 2 dinner grilled chicken, rice, green beans, pineapple chunks, unsweetened tea total carbs 57gm

june 3 breakfast scrambled eggs sauteed breakfast potatoes fruit cup skim milk decaf coffee. carbs 87gm

june 3 lunch seasoned grilled chicken, brown rice, steamed broccoli orange wedges uns tea 79gms'

june 3 dinner lasagna cup, italian veggies, dinner roll grapes orange sherbet uns tea 95gm

june 4 breakfast scrambled eggs sauteed potatoes banana OJ skim milk decaf coffee 100gm

june 5 breakfast scrambled eggs 2pancakes  2 turkey saysages skim milk coffee 57gm

june 5 lunch chicken marsala ital veggies garlic roasted potatoes skim milk uns tea 52m

june 6 breakfast scrambled eggs biscuit w gravy (nah!) pineapple chunk OJ coffee 59gm

After hour suppository not yet working. So many meals,

Major disaster. Pooping not happening.  But while on silly portable toilet the IV needle accidentally dislodged (again)  resulting in blood all over. Me and the floor. Big cleanup by these poor folks. Even socks got bloody plus hand leg and floor – wow. The IV now replaced on left hand easily by Deja, RN. My temp had gone up to 102 in the stress so have been given tylenol to lower. As far as pooping – forget it.

Prune juice and prunes at home will work. Now the next test is if can pee on own. Cath clamped for 4

plus hours and am drinking unsweetened ice tea and half pint milk. Grilled cheese sandwich tonight

instead of skipping dinner.

Cath out! Have something that looks like banana between legs and nurse Deja said can just go. Right

there in the bed – Purewick would absorb it. Just another indignity. Finishing unsweetened ice tea,

have half pint milk and water. The Purewick worked once.

It worked – peeing!

Wakemed Hospital docs and RNs absolutely excellent. And the MyChart app? Fantastic. One could see

what was scheduled when – such as at 3am a vital signs check coming up or inhalation therapy. I could

also see the results of all of my tests, including the empty head scan for stroke.

HOME

 Back on Eliquis blood thinner. Hopefully it will help dissolve the lung blood clots. Discharge had me

order bunch of meds, among which was a three day supply of the Dexamethasone, the steroid that

interferes with insulin production So I got the CVS glucose monitoring system and insulin. I have to

test 3X a day, before every meal. I have had to inject one or two units of insulin totaling four units since

June 8. My values have been good – low enough – I have not needed to do so since June 11th. I have

taken a total of 3 units of insulin up to that point. Today, June 14th my last glucose check result was 89.

My PCP would be delighted with that.

I initially used a walker but have evolved to mostly doing without it. Going outside I use a cane my pal

Barbara Warren sent me. I go up the driveway with the garbage container or to the mailbox. Lately I

just carry the cane and walk on my own. No speed demon of course. I had to go out to return an item to

Amazon at Whole food and stop in CVS. I used the cane.

All bodily elimination issues resolved.

I have 10 PT appointments, the first eval on June 20th. I am not sure I will be able to do Outdoor

Nationals since my muscle mass is gone. Today, the 14th I started doing leg and glute exercises,

including one minute wall sits.

On June 14th I finally tested negative for Covid. I plan a second test tomorrow the 16th. May I not get it

a third time. The immunoglobulin infusions should help resist or prevent it.

The clots are still an issue – the DVT in left leg and of course the lungs. What remains of them will

dissolve at some point. The blood thinner helps.

I have been fortunate in my friends. Angela and Warren pestering me while I was home in bad shape,

(Angela concerned about my O2 Sat values thinking if I did not go o ER, I would be departing this

life.) Then there are Paula and Donna who transported me home after picking up the walker and some

groceries then worked at clearing up the mess I had at home to make room for moving around etc. No

doubt cringing at the piles of stuff on the living room table. The pole lamp was broken so Paula took it

with her to discard. (I later ordered a replacement, which had to be returned necessitating a trip to

Whole Foods Amazon return. I feared getting the box down the steps and into the car then into WH,

but managed, usng the cane. The replacement had no problem and I assembled with a curse word or

two. )

And Angela making that 2 hour drive two days after I was discharged to take me shopping again,

June 9 Angela and local pal Anne

including as a last task getting my dog from boarding. It was a long tiring day for her.

So in the end I still have to say FH! For the trauma caused me and my friends.