Past Monday Anniversaries

Sharing again this year since it’s another Monday.

Today I am hugely thankful that the last major issue we had here was in 2013 when Tom had his heart attack.  That event caused me to start a whole new blog to post about our experiences.

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Adapted from https://maryomedical.com/2013/02/08/the-beginning/

January 27, 2013 was our 40th anniversary.  DH called me and said he was leaving a conference in Washington, DC and we’d go out to brunch when he got home.

The next thing I had heard was that he was in the ER with a suspected heart attack.  I rushed to the ER and found him in his cubicle.  He’d had 3 nitroglycerine pills by then and figured he could go home.

Wrong!  They had him stay overnight at the hospital.  January 28th, they decided to send him by ambulance to Fairfax Hospital for a cardiac catheterization and possible stent.

At the end of that, the surgeon came into my waiting room and said that he needed triple bypass NOW.  Three of the arteries were 100% blocked.  They got me calmed down to see him in the OR.

He was trying to get odds of not doing this surgery and just leaving then.  Finally, I said that he would do this surgery, we weren’t going to fool with this.

I really lost it when they asked me if we had any children and I said 1 son in NYC.  They called him at work in New York and had him get there as soon as possible.  I’m sure he could hear the fear in my voice.

They wheeled DH off for surgery and I waited again.  Luckily, 2 church friends came and sat with me and our pastor arrived about 8:00PM.  Our son arrived about 8:30PM after taking the Acela and a taxi directly to the hospital.

The surgery was over about 9:00PM but when we saw Tom, he was still under anesthesia.  They kept him that way until the next morning since he was too confused when they woke him up.

Long story short (too late!) – he got out of the hospital on the 31st and I played nurse 24/7.   He couldn’t drive/go anywhere for 6 weeks, and then there were 12 weeks of cardiac rehab.

One of the things that came out or cardiac rehab was becoming friendly with 2 other couples (although one of them has since split up).  We go out to dinner every couple months…and none of the surgeons would be happy about our choices.

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A slightly different take on the events, written 3 weeks later on the same blog.

Icy Days and Mondays…*

* With apologies to Karen Carpenter!

I know I’m not supposed to “relive” events.  I have done that too often with my Cushing’s and cancer adventures and I’m told that reliving causes nearly as much stress as the original event.

So, I plan to write down my memories here and try to let them go…

It all started on Sunday, January 27, 2013 – our 40th wedding anniversary.  I picked up my mom and went to church so I could sing in the choir.  DH went to a meeting of some sort on Benghazi.

After church, I stopped off in the church office for a goodie bag that the Staff Parish Committee had left.

Dropped my mom off at her house and went home.  I put the goodie bag on the dining room table and logged onto the computer to do some work.

I got a couple text messages from DH:

Text message

I figured I’d take a nap until DH came home for that late brunch.

The next thing I hear was my phone ringing, a call from DH.  He was in the ER at Fair Oaks with a heart attack.  OMG!

I immediately leaped up and rushed out the door.  I called one of my pastors and got to the ER in record time.   When I arrived, he was in a bed, all hooked up to monitors, fluids and such.  He was awake and feeling pretty well thanks to the nitroglycerine they had given him immediately after arrival.

When we had a chance to talk, it turned out that he had been in his conference and realized his chest was getting tight.  He found the hotel’s store and bought aspirin – 3 for $11.00 which he thought was extravagant.  He bought them and took them anyway – and probably saved his life.

On the way home, he was feeling pretty good so he stopped at the mall to buy an anniversary gift.  The salesgirl in Zales didn’t know that ruby was the stone for the 40th anniversary and was kind of ribbing DH for waiting until the last minute to buy a gift.  He walked out of there, felt more tightness and headed to the ER…where he called me.

DH was feeling pretty well thanks to the nitroglycerin and aspirin plus whatever else they had in the IV and wanted to go home.  The staff said no way – he had to stay overnight so he could be monitored.

The “automatic clock” on the wall said it was Monday.  Other rooms said Sunday.  Hmmm

A trainee EMT came in to ask some questions as part of his learning process.  Every time DH mentioned the word “Benghazi”, his blood pressure spiked about 40 points or so.  That term became verboten ever after.

My pastor stopped by and we had some nice chats and prayers.

Time passed, tests were done, doctors and nurses stopped by.  Finally, DH was moved to his room upstairs.

About 9 or so I went home and found our dog huddled by the front door – I had left so quickly I hadn’t left her any lights on.  I imagine she was quite worried.

I can’t even remember what I had to eat for dinner but I really wanted something chocolate.  On a whim, I looked in that goodie bag and there was a double-sized brownie.  I think I ate that in record time and it really hit the spot.

Ice

Monday morning (for real!), I checked the weather and found that school was starting late because of icy conditions.  I put on boots and took the dog out.  It seemed to be raining – if it’s raining, it must be warm, right?  So I didn’t really pay attention (and I had other things on my mind!) and completely missed seeing the black ice.

Next thing I knew, I had fallen on one knee, my cell phone in my pocket bruised my other thigh and my left arm hurt where I’d reached out to catch myself.  Luckily, I hadn’t let go of the dog’s leash.

I ended up sitting in a puddle of icy water for a long time, figuring out how to get up.  I finally sort of crawled up the trash can that was sitting in the driveway.

The dog had an abbreviated walk, I changed my wet, cold clothes and headed to the hospital.  I was showing DH my knee and one of the staff bandaged it up for me.  I told him I hadn’t fallen at the hospital and wouldn’t sue but I guess he wanted to be sure.

(Today, Monday February 18, my knee still has a huge lump under the skin and hurts when I touch it, although I’m no longer limping,  The bruise/pain from cell phone finally went away)

The hospital staff decided DH should go to another hospital which is world renowned for its work with heart cases to have a heart catheterization and possible stent.  DH was ready to walk out to my car to drive him to Fairfax Hospital.  He wasn’t thrilled when he was strapped to a gurney and out to an ambulance instead.

I headed over in my car.  They’d changed the entrances to the hospital since the last time I was there and I couldn’t find the “Grey Entrance”.  Finally, after wandering around for a long time, I found it.

I saw DH in the prep room where they got him ready for the heart catheterization – then they rolled him away after explaining all the things that could go wrong.

I went out to the waiting room, got some coffee and a sandwich and hunkered down with my iPad.

Eventually, my beeper went off and I was called back to the room where DH had been prepped.  The surgeon was there this time.  She said that 3 arteries were nearly 100% blocked and they needed to do emergency triple bypass.  They also needed me to convince DH of this since he was figuring he could tough it out.

I started crying but she said I had to get myself together and convince him NOW.  I had to put on scrubs and off I went to the OR.  I got there, DH was on the table trying to figure out the odds if he didn’t do this surgery.  All the medical staff said that he had  a very low chance of survival without the operation.  He still wasn’t sure.  He wasn’t afraid to die.  Tough Guy, Yadda Yadda.

One of the nurses asked me if we had any kids.  I said only one, in NYC.  She said I should call him and get him here ASAP.  She even dialed the number.  I talked to DS at work and he agreed to come right away.  He was pretty scared, too.  He later revealed that he had been crying on the train ride.

I went back to the OR, told DH that DS was coming and that he was going to do the surgery like it or not.  I signed the paperwork and sent him to a very scary surgery.

It was about 4:30 by then and I needed to take the dog out again.  They said I could go home – surgery wouldn’t be over until about 8:00PM or so. Got home, took the dog, made sure that there were lights on, and headed back to the hospital.  Another pastor from my church called.  He said he’d be by the waiting room later.

Two friends from the church office texted me to say they were coming over to sit with me in the waiting room.  They got there about 6:30 and we decided food might be a good thing.  We headed out, following a variety of directions and signs and walked for a l-o-n-g time.

My knee was killing me.  We got to the cafeteria and found out that it was closed.  the 24-hour one was elsewhere.  We finally found that, got some food and my cellphone rang.  The surgeon would be coming out soon to talk to me.

We hustled back to the waiting room and the surgeon came out about 8:00 with good news.  Successful surgery!  DH wasn’t awake yet but we could see him about 9:00PM.

The pastor arrived about 8:30, then DS got there about 8:45.  Finally, they said we could see DH although he still was asleep.  My friends left, pastor and DS went in to see him in ICU, sleeping so peacefully with so many lines attached.  The pastor prayed, then left.  DS and I decided to stay to see DH awake.

About an hour later, the ICU tech said they were going to keep him asleep overnight so we went home.

Monday

Tuesday, January 29 – DS called the hospital fairly early and found that DH was still a bit agitated so they were keeping him under a bit. I took the dog out and we got ready to head back.

I got a call that he was waking up but agitated.  He kept fighting with the nurses on the day of the week.  He kept saying it was Monday, even though it was Tuesday.  Surprise, surprise.  The calendar on the wall hadn’t been changed.  It still read Monday.  No wonder that’s what he thought!

We stayed all day, though nurses, techs, doctor visits and such.  He was in ICU so was monitored very well.  DH was quite confused and repeated himself a lot.  He wasn’t quite sure what had happened.

Monday

Wednesday, January 30.  DH had been moved from ICU into a regular room and we had to follow visiting hours, even though we were family.  We could visit at 11 and had to leave at 1, then back for 6-8.  Actually, this worked out well since I was able to take my first nap since this whole ordeal began.

DH had called DS early in the morning and  said he “needed” his cell phone to make some work calls.  Luckily, DS talked him out of that, saying that he could say some wrong things, given his temporary memory issues.  Thank goodness!  I didn’t want him spending his days talking on the phone.

We got there about 10:45am and they still wouldn’t let us in due to “flu season”.  I’m not sure how we could give him the flu in those 15 minutes before official visiting hours.

I glanced at the whiteboard on the wall where the nurses’ names, doctor’s name and such were written.  Unfortunately, no one had changed this whiteboard since Monday, so that’s what it still said.  <sigh>

We visited – DH got to eat a bit and had started having lines removed.  He thought he might put his shorts on so went into the bathroom to do that.  Unfortunately, he managed to pull the IV out of his hand and bled quite a bit.  The nurse sent him back to bed and said no more of that!

A representative from the group Mended Hearts stopped by with information and a heart-shaped pillow.  They have meetings the first Saturday of the month, so we might go to some of those.

The first pastor dropped by again and we made plans for Friday to pick up DH’s car which was still at the ER.  No one else I know could get it – it’s a standard shift car.

Not much else – visiting, napping, improvements every day.

Not Monday

Finally, it’s not Monday!  Nowhere, nohow.  Just Thursday, January 31 after 4 days of Monday.  Hooray!

DS had a headache so I went to the hospital alone.  He was going to come for the nighttime visiting hours.  As it happened, DH came home this day after lots of testing, last minute X-Ray, discharge notes, complaints about the night nurse…

We got home about 5:00PM.  Yea!

Now the real work began – visiting nurses, medications, doctor visits, rehab.

Since it’s no longer Monday, this post is over 🙂

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Whew!  There was a lot more after the surgery – visiting nurses, cardiac rehab, so on and on.

I am hugely thankful for my pastors, friends, family, people who brought us dinners, all the doctors, nurses, surgeons, visiting nurses, rehab personal, Mended Hearts, ambulance folks, aspirin, nitroglycerin, insurance, Fair Oaks Hospital, Fairfax Hospital, everyone involved in any way with this escapade.

Five orange pumpkins sit in a row in front of a distressed, wooden background.

38 Years Cushing’s Free!

Today is the 38th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

Bee’s Knees: Real Groundhog Day

Sunday Night, February 2, 2025. Still, no one has called to schedule a re-delivery. Surgery is still tomorrow (Monday) morning…


What I wrote for the first “Groundhog day“…

For the saga of my left knee, see these posts: Bee’s Knees

Bee’s Knees: Early Groundhog Day?

Monday, January 27, 2025. ROMTech called – they plan to take the machine back tomorrow (I asked them to hold off until Wednesday since no one will be home).

They said Dr Alamanda will have to prescribe it again if he wants me to use this.  I am ambivalent either way since I have never used this or seen any benefit from it.

Then this came in my email:

I have no idea what the solution was and I didn’t feel like calling again and listening to Musak. They picked up the machine at 8:30 am on January 29.

Today, January 30, 2025 I got this voicemail:

No one has called (yet) to schedule a re-delivery. Today is Thursday, Surgery is Monday morning…

Friday, January 31, 2025. Still, no one has called to schedule a re-delivery. Surgery is still Monday morning…

Saturday morning, February 1, 2025. Still, no one has called to schedule a re-delivery. Surgery is still Monday morning…


So, here’s what I wrote for the first “Groundhog day”…

A few days ago, I got a call from my insurance company letting me know my surgeon had prescribed a ROMtech machine for me. That was the first I’d heard of this thing. With all the other stuff going on, I didn’t give it another thought until a woman called on 12/29/24 and said they’d be delivering this on Thursday and someone would call me on 12/31/24 to tell me the time. She only asked me what room i wanted it in, my height, if I had a straight back chair and confirmed my surgery date.

Of course they didn’t call on New Year’s Eve so I didn’t give it another thought until the next day, New Year’s Day. A guy from Texas with several kids yelling in the background called on 1/1/25 and said he’d see me on 1/2/25 between 8:30 and 8:45.

So, I decided to look into this thing. I checked in one of my Facebook groups – some people had used one of these things successfully. I came across some YouTube videos – mostly company produced – and it looked good. Full of happy, smiling people. Looking back to my first day of PT for my left leg, no way was I happy or smiling.

So, I finally found some other information – even through their videos don’t show it, my chair should be against a wall. We don’t have many of those – we have book cases, pianos, organs, sofas, beds, and stuff. No blank walls. And somewhere I read that I should be wearing shorts when the delivery guy came. I finally settled for capris that I could roll up.

Delivery guy was on time at 8:30. Didn’t care about the shorts at all. <Whew>. He says he delivers/picks up 15 of these things a day! Who knew?

….

This afternoon I have an hour training on the ROMtech machine.

Another day gone.

Meanwhile

For the saga of my left knee, see these posts: Bee’s Knees

Bee’s Knees: Pre-RTKR, Testing and Stuff

During the medical clearance, the nurse wasn’t happy with my blood pressure so she sent me to my primary care for blood pressure medications. She said if I did that and they faxed her, she would approve my surgery.

I did all that but she lied. She didn’t approve my clearance.

My surgery is now February 3, 2025, time TBD

Another month gone.

Meanwhile

For the saga of my left knee, see these posts: Bee’s Knees

Bee’s Knees: Pre-RTKR, Testing and Stuff

This morning, I got my surgery time for 9 am on Monday, January 6 – be there at 7. Ok.

While I was doing my pre op testing, my doctor’s office called and said because of the predicted snow (I’m in the 4-8″ band, my surgery would now by Thursday, January 9, time TBD. Moving the surgery ensures that it won’t snow.

During the medical clearance, the nurse wasn’t happy with my blood pressure so she sent me to my primary care for blood pressure medications. She said if I did that and they faxed her, she would approve my surgery.

This afternoon I had an hour training on the ROMtech machine. During that, we had thunder snow. I don’t think I’ve ever had that before. It was 45 degrees when we left the hospital.

While I was napping after all this, I got a call from my surgeon’s office that the nurse didn’t give the clearance like she said she would so the surgery scheduler canceled my surgery.

Of course, it was after hours when I got that message 😦

Another day gone.

Meanwhile

For the saga of my left knee, see these posts: Bee’s Knees

Bee’s Knees: Pre-RTKR, Testing and Stuff

A few days ago, I got a call from my insurance company letting me know my surgeon had prescribed a ROMtech machine for me. That was the first I’d heard of this thing. With all the other stuff going on, I didn’t give it another thought until a woman called on 12/29/24 and said they’d be delivering this on Thursday and someone would call me on 12/31/24 to tell me the time. She only asked me what room i wanted it in, my height, if I had a straight back chair and confirmed my surgery date.

Of course they didn’t call on New Year’s Eve so I didn’t give it another thought until the next day, New Year’s Day. A guy from Texas with several kids yelling in the background called on 1/1/25 and said he’d see me on 1/2/25 between 8:30 and 8:45.

So, I decided to look into this thing. I checked in one of my Facebook groups – some people had used one of these things successfully. I came across some YouTube videos – mostly company produced – and it looked good. Full of happy, smiling people. Looking back to my first day of PT for my left leg, no way was I happy or smiling.

So, I finally found some other information – even through their videos don’t show it, my chair should be against a wall. We don’t have many of those – we have book cases, pianos, organs, sofas, beds, and stuff. No blank walls. And somewhere I read that I should be wearing shorts when the delivery guy came. I finally settled for capris that I could roll up.

Delivery guy was on time at 8:30. Didn’t care about the shorts at all. <Whew>. He says he delivers/picks up 15 of these things a day! Who knew?

This morning’s PREOP TESTING ORDERS:

Medical Clearance for Surgery by RHC PAT Nurse Practitioner/Physician Assistant

CBC w/ DIFF              CMP                CHEST XRAY 

PT/INR                        PTT                 HEMOGLOBIN A1C               

UA                               EKG                MRSA/MSSA (Nasal)

This afternoon I have an hour training on the ROMtech machine.

Another day gone.

Meanwhile

For the saga of my left knee, see these posts: Bee’s Knees

Bee’s Knees: Pre-TKR, Setback

So, I’m now on the road to having my right knee done, supposedly on January 6, 2024. All the testing has gone swimmingly.

Except…
I was supposed to have my final “Interview today”. The one where they do all the real testing, including for MSRA.

But that, like so much with knee surgery, turned out to be

I got the call that my nurse had a family emergency and couldn’t see me today. They found me someone else to do the testing. On Friday, January 3. A bit close to Monday if any tiny part of the testing goes wrong.

Yesterday was weird. It was CT scan day. I went to the hospital, filled out the “paperwork”, actually iPadwork, paid my copay, did the interview, got the wristband.

Then they told me I was in the wrong place. I should be across the street. The staff was confused. The staff across the street was confused, too. but they took my paperwork, copay and accepted my wristband.

So, now I wait until Friday to see if my Monday schedule changes or what.

Meanwhile

For the saga of my left knee, see these posts: Bee’s Knees

Bee’s Knees: TKR, Finally!

After going through the Medical Clearances again, 5 days of antiseptic showers (plus another one this morning), drinking what seems like gallons of Gatorade (I couldn’t have the hospital-offered strawberry Ensure), my surgery is scheduled for 12:30 pm today. There will be a Covid test at 10:30.

We have been watching tons of youtube videos on knee replacement, physical therapy I think that this was one of the most helpful:

From the hospital…

As your surgery date gets closer, you might feel uneasy. But the more you know about what to expect, the less nervous you’ll be. Take a few minutes to learn how the day will unfold.

What happens when I get to the hospital?

You’ll usually be asked to arrive about 2 hours before your operation starts. A registered nurse will greet you and help you prep. You’ll discuss with them your medical history and the medicines you take. You’ll also get a chance to talk to people on your surgical team about the operation.

Before you go to the operating room, you’ll first change into a gown. The nurse will remind you to remove things like your jewelry, glasses or contact lenses, hearing aids, or a wig if you have them.

A nurse checks your heart rate, temperature, blood pressure, and pulse. The surgeon may mark the spot on your body where the procedure will be done. A nurse places an IV line in your arm so the doctor can give you fluid and medicine during your operation.

When it’s time for your surgery, you’re wheeled into the operating room on a stretcher.

Who will be on my surgical team?

A group of doctors and nurses work together to make sure everything goes smoothly. The specific people depend on the type of procedure you’re going to have. But in general, your team will have these pros:

Surgeon. This doctor leads the team and does the operation.

Surgeons have to complete 4 years of medical school, plus at least 5 years of special training. They also have to pass a national surgical board exam. The one you choose should be experienced in the type of procedure you’re having.

Anesthesiologist. This health care professional gives you medicine that makes you pain-free during surgery.

Certified registered nurse anesthetist. They assist your anesthesiologist and monitor you before, during, and after your operation to make sure you get the right amount of pain medicine.

Surgical tech. They set up the tools your surgeon will use and make sure they’re sterile.

Operating room nurse. They help the surgeon during your procedure. For instance, they may pass instruments and supplies during the operation.

Will I be in any pain during the operation?

You’ll get medicine, called anesthesia, so that you won’t feel anything during surgery. The type you get depends on your health and the procedure you’re having.

Local anesthesia. It blocks pain in the part of your body where you have surgery. You’ll still be awake and alert.

Regional anesthesia. Youre injected with medicine that numbs the whole area of your body where the surgery takes place.

General anesthesia. It puts you to sleep during your operation. You get this type of medicine through an IV in your vein or by breathing into a mask.

What will happen during my surgery?

Once you’re in the operating room, you breathe oxygen through a mask. Your anesthesiologist gives you medicine to prevent pain.

Your surgical team will track your health during the whole procedure. They’ll probably use:

  • A clip on your finger to measure your oxygen levels
  • A cuff on your arm to check blood pressure
  • Pads on your chest to keep tabs on your heart rate

How will my surgical team keep me from getting an infection?

Before the surgery starts, a nurse cleans your skin with an antiseptic to help prevent infections. They may remove hair from the area and place a sterile drape over your body. It will have an opening in the place where the surgeon will work.

It’s rare to get an infection during surgery. Your team does everything it can to protect you. Your doctors and nurses will:

  • Clean their hands and arms up to their elbows with a germ-killing cleaner before the operation.
  • Wear masks, gowns, and gloves.
  • Clean the part of your body where the surgery is being done with a germ-killing soap.
  • Clean and cover the cut afterward.

They may also give you antibiotics before your procedure to help prevent an infection.

Where will I go after my surgery?

You’ll wake up in a recovery room. A nurse checks your heart rate, breathing, and the bandaged area where your procedure was done. They might also ask you to take deep breaths and cough to clear your lungs.

You’ll stay in the recovery room until you’re fully awake and all your medical signs, like blood pressure and heart rate, are stable. How much time you spend there depends on what kind of surgery you had.

After that, depending on the type of operation you had, you’ll get sent to a hospital room or back home. Either way, you’ll be ready to be greeted by your loved ones and begin the road to recovery.

This post is officially done…for now. Next stop, Total Knee Replacement.

Bee’s Knees: Pre-TKR, Another Setback?

On 1/23/2023 I said: “Someone pointed out that, since the new surgery is more than 30 days away, I may have to do all the clearances again…”

Thursday, February 15, my heart sank when I got a call from the hospital. After being on hold forever, I talked to a person who wanted to schedule my medical clearance, again. I told her I’d done it before in February for the rescheduled surgery. She said she’d check with my surgeon to see what he wanted.

Friday, I heard nothing until 4:58 pm. He wants to do a medical clearance “revision” whatever that means. So I go back to the hospital next Thursday (March 2) for more testing. If they find some other obscure infection, that won’t be enough time to fix it before the current surgery date Thursday May 9.

March 2, 2023

So, I had the Medical Clearance Revision today and it was exactly like the Medical Clearance I did just over 30 days ago. It looks like surgery is a go. Thursday, March 9 at 12:15.

There’s extra stuff for me to do to prepare, thanks to Cushing’s, the GH deficiency, the Adrenal Insufficiency, the one kidney, etc but I can do it!

1678382100

  days

  hours  minutes  seconds

until

(K)new Knee

.