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.
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.
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
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
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
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
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
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. You‘re 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.
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!
“New, Approved-Dentist finished up everything he needed so I got Dental Clearance. This is the final piece of the clearance puzzles”
At the end of that appointment, Approved-Dentist gave me a prescription for an antibiotic, just in case.
Stupid me. I asked the intake nurse about that. She reported it to the surgeon who moved my surgery from 2/2/2023 to 3/9/2023. If someone else is rescheduled, I might be able to move mine back. Maybe.
Then, other test results came back – staph infection in my nose, maybe UTI.
Wednesday, 1/25/2023
So, I am still limping around, changing all the physical therapy appointments I’d set up for the 2/2 surgery. One of the positives is that I get more time in water aerobics building up my leg muscles.
A very positive:
1/27/23 was our 50-year anniversary. Amazing! We celebrated early with a cruise on the Wonder of the Seas. I’m still assembling those photos/posts but we went a little earlier in the month because it was cheaper 🙂 I chose this cruise because I thought it would be cool to be on the current world’s largest cruise ship. I have been on larger ships but DH has not.
We have another cruise scheduled for the Arctic Circle in July but I may not make it because of the new surgery date and recovery. I am very excited about that cruise because we tried to do something very similar and Covid changed those plans.
Someone pointed out that, since the new surgery is more than 30 days away, I may have to do all the clearances again.
Today, 1/28/23 is the 10th anniversary of the fall that started all this. My first post about my knee was really about Tom’s heart attack, and the reason for this blog in the first place. Who know that the knee thing would eclipse everything?
In that post I said:
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 cellphone 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 2013, 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 cellphone finally went away)
The very first of the Bee’s Knees series was February 28, 2016. I had no idea it would go on so very long. Like I said in the last post, I sure hope this is trus!
This post is (hopefully!) officially done…for now. Next stop, Total Knee Replacement.
MaryO'Medical 
