Logo

Surgery Recovery Updates (Blog)

Here you will receive updates on the 2-6 month recovery of my pituitary brain and sinus surgery.

You will get Joel's more medical / technical updates from his perspective (since he is an engineer)
and my funny stories since crazy things are always happening in my life.

Quote sign

Cushings - Update 27

Cushings Reality Show

Person one

September 8, 2022

 

Oliver and I wait patiently while the lab guy tries to process 20 different blood work lab orders across 7 different sets of paperwork. Kind of entertaining. Welcome to my world, lab guy.  


oh, and this is after the front desk kept trying to tell me I had 20-x orders and I had to keep explaining I had more and then even more and then even more (yes 3 rounds) It was quite the ordeal. Again, Entertaining. My world is like a fun circus.

 

Hannah

Quote sign

Cushings - Update 26

There Are Days I Feel Totally Defeated

Person one

September 7, 2022

 

And then there are days like today where I feel totally defeated. I’m on my knees with my face in my bed and my arms stretched out.

 

I literally have 20 different tests that need to be done through bloodwork to figure out all the things going wonky.

 

Today I had to get an abdomen ultrasound. It was a win since my kidneys and gallbladder are fine. From what I understand, it’s not that rare for Cushing’s people to have to get their gallbladder removed. I still have a fatty liver which was not a surprise considering my stomach still looks like a pregnant persons.

 

In October, I have to get an endoscopy and a colonoscopy at the same time (they are changing the recommended age from 50 to 45 due to many cases at a younger age). I suppose this is fine since I’m going to be under anesthesia, which is one of my favorite things ever. It’s just the ultimate deep sleep and is joyous.

 

At least I can finally sleep with my CPAP since they came up with the new mask. That’s a win that I’ll take as well. I’m not noticing a difference so far but I guess it can take up to three months.

 

And I also need to start working with the neurology department about some things going on.

 

It seems like all I do is go to medical appointments and that it’s never going to end.

 

Another win worth mentioning is that my sinus CT came back so it looks like I won’t need to have a third surgery.

 

I was happy all day until this evening when everything hit me like a bullet train. I need a break from all this. I would pay some serious bucks to be able to leave all my medical issues for a vacation without them. Not just appointments but everything wrong with me.

 

Another win is how much this has changed Oliver for the better. And he is the one that actually brought that up and says so. I dropped him off at tennis practice and his coach who has a broken leg was getting out of his car and had managed to get his stool out by himself. Before going to the court, Oliver ran over to his car and carried his stool to the court for him. He totally gets how difficult it is to have medical issues and disabilities. I was so proud of him.

 

I feel better after writing all this. So I will lay on my spikey acupressure mat and then go to bed

 

Thanks for listening. Please continue to send your prayers and positive wishes.

 

Hannah

Quote sign

Cushings - Update 25

Next Area of Focus Is
My Stomach and Liver

Person one

September 6, 2022

 

I think that there should be some sort of certification for people that go to a certain number of specialists within a designated time frame. Because they become kind of like a medical assistant by association.  


Seriously, all my friends that have had major things going on with them or their kids have so much and such incredible knowledge, we are all able to help each other when the doctors can’t any longer.


Next area of focus by the doctors is my stomach and liver. Ultrasound of my entire abdomen is tomorrow. Then I am having an endoscopy in Oct.
In the meantime, Joel found this test we take at home to see how we are doing in the areas outlined in the photo.


You have to cut a certain amount of your hair off since that is what they analyze so it’s not a result of what is happening right now but over x amount of time.

 

We finally found an area of my hair that wouldn’t look weird missing (my hair is extra thin right now thanks to Cushing’s) and Joel cut it off (OMG - so scary. Quite the trust exercise)


Then I decided to keep the rest so when my hair gets really gray in the future and I want to color it my natural color I can. Know exactly what that was.


It’s crazy how dark it is. I had forgotten since I highlight it all the time. Plus I have genes for photosynthesis so it gets much lighter when exposed to sun so I used to only see it this dark in the winter. The picture makes it look black, but it is just dark brown.


Meanwhile, my sinuses continue to be an issue. My dr is being really slow at getting the results of my CT to me. We may have to do surgery a 3rd time!!!!!


So stay tuned…and send prayers and well-wishes please.

 

Hannah

Quote sign

Cushings - Update 24

It’s Just A Matter  of Perspective

Person one

August 18, 2022

 

People tend to think I am doing just fine. The other day, someone said how happy they were that I was doing so great. But the truth is that I am actually not doing that well. It’s just a matter of perspective.

 

Check out what I mean in this video.

 

Hannah

Quote sign

Cushings - Update 23

So Excited!

Person one

August 3, 2022

 

So excited not to have to wear my medical alert bracelets anymore now that my pituitary gland and adrenals are working like they should.

 

Hannah

Quote sign

Cushings - Update 22

Dealing With My Tricky Mind

Person one

July 25, 2022

 

Dealing with my tricky mind….


These pill cases probably are brilliant in reality but when I can’t remember what day it is and convince myself it’s a different day than the case seems to be indicating it is and so I skip a day to get “on track“….then the next day I’m confused as to why I didn’t take my medicine the day before…OR then I take yet a completely different day because I’m confused in a different way about the time of week it is.


So I’m currently looking at a case that only has medicine for Sunday night. The rest of the week has been taken. I do know it’s Sunday night for sure. But I could’ve sworn I already took the medicine for tonight. So I don’t know what to do. Skip it I guess.


THEN there are the days where I realize I haven’t been taking one of my KEY prescriptions at all for who knows how long because I goofed it up when I filled up the pillcase. So then we realized Joel needs to be in charge of filling the pill case…. In which three weeks later I found out I hadn’t been taking TWO different KEY pills.


What a disaster!!


I can’t wait for my mind to start fully functioning consistently again. These are just simple things and I totally goof them up!!! I used to create complex global strategies connecting 30+ countries and now I cannot even take meds right. This is so frustrating.


OK, HERES THE POSITIVE SIDE


i’ve always been a type A perfectionist which comes with a high level of stress working at a place like Microsoft and this is just the stress I would put on myself, not the stress they would put on me. I’ve always known that perfect doesn’t actually exist and the time it takes to take something from very very good to what you would call “perfect “does not bring the ROI that makes it worth it. I’ve never really internalized it until now when there’s no way I could do anything close to “perfect”


Now, Through continuously screwing up pretty much everything I touch as part of my recovery, I’ve learned that really Good versus perfect is great and no one really even knows the difference.


I used to rarely ask for help because I knew that I’d be able to find a way through problem-solving to come up with a great solution for things. Well, when you go through recovery and basically limited to doing 1% of things, you learn to ask for help (or your husband gets mad at you and u cannot sit through another lecture  ). And when u ask, it will be good enough and that’s all it can be and that works just fine. Really good, pretty good keep the stress way down….perfect is stressful and sucks and everyone has a different opinion on what that is.


So that was a long way of saying that I screw up pretty much everything I can actually do which I have no control over no matter how many times I double check something. And that in itself will whip the perfectionist right out of you… Because it’s not possible, not even an option


SIDE NOTE


Were you aware that the high levels of cortisol that I had for years also impacts your cognitive abilities? I feel like I’m in training for when I’m 80 years old. It’s like a preview of what it could be like and so maybe I can have some lead time to figure out some solutions to save me from myself
But the mind does come back. Compared to where I was just after surgery six months ago, I’m quite advanced. I just still have a ways to go

 

Hannah

Quote sign

Cushings - Update 21

Putting Back The Pieces
Little By Little

Person one

July 22, 2022

 

Finally feeling like I am putting back the "pieces" of my health little by little. About a month or so ago, I shared that I was having testing done to see if my adrenals were turning back on again or not (since not everyone's does).


The good news is that they are fully working again! So I no longer need to worry about having an adrenal crisis (or being left with Addison's disease). They work and are fully functional (for some people, they will turn back on but aren't consistent in how they work - sometimes, they just kind of work when they most feel like it - slackers). So this is a HUGE DEAL! Definitely worth celebrating!


Thank you for your prayers and well wishes! Please keep them coming, I still have an entire body to heal!

 

Hannah

Quote sign

Cushings - Update 20

My Morning Snack

Person one

July 22, 2022


Here's a photo of my morning "snack" of pills even 6 months after surgery! And this is far less than I was on! AND this is in addition to my evening "snack" of pills.


At least it helps me get my water intake for the day   16oz of water.

 

Hannah

Quote sign

Cushings - Update 19

5 Months After Brain Surgery

Person one

July 9, 2022

I know this all too well with Cushing’s recovery. 5 months after brain surgery and I still have days where I cannot function and the only thing I can do is just be alive. Sounds dramatic but it is true. Today is one of those days.

 

But every single day I experience joy…this deep feeling in my chest of true appreciation of the life I have been given, the people in it and the beautiful Seattle area we live. Today I am appreciating all of it as I sit on my deck and just “be”

 

Hannah

Quote sign

Cushings - Update 18

Cushing's Sucks!!

Person one

June 20, 2022

The last handful of days have been very energy sucking. Every day is in general but moreso today. Today I ended up sleeping until 1:30 in the afternoon. I’ve been awake about three hours and have been just trying to rest so I’ve been watching TickTock videos and old pictures and videos. So it’s been a very HAPPY three hours with lots of giggles.

 

And I forgot that even being excited or happy and still not doing anything other than sitting by myself will completely suck out every bit of energy that I have. Welcome to a small part of Cushing's.... it’s like a constant game of "try not to feel any emotions to preserve any energy you may have woken up with."

 

Little by little, I am having more energy and able to get around the house more. So I will take it.

 

As my doctors continue to remind me that recovery is not a straight line, it’s like a roller coaster ride and this last week has been the downward part.

If you want to make sure you don’t miss any updates, go to www.hiddenillnesses.com and sign-up to get email updates. As you know, Facebook only shows certain updates based on your own unique algorithm. (if you have trouble getting to the site, please let me know in the comments)

Right now the site is having issues, so just let me know if You want email updates by commenting below. I don’t send them very often. Maybe once a week.

 

Hannah

Quote sign

Cushings - Update 17

Pituitary Gland Test

Person one

May 14, 2022

Taking a test today that will tell me if my pituitary gland is working or not. After the brain surgery, it stops working so my body will stop making the excess cortisol which destroys every cell in the body.
Prayers please. Some peoples dont ever turn back on and they have to be on meds to keep them alive the rest of their life. Stay tuned.

 

Joel

Quote sign

Home Recovery - Update 16

MRI Needs Another Expert Review

Person one

March 30, 2022

Joel here - This week was a tough week, but it was better than the previous week. We ended up having two health challenges on our hands as Oliver came down with some kind of random stomach illness that was quite unpleasant. It took a few days to clear out and did repeat, though more "mildly" later in the week. We think we have isolated it to a specific food and are testing out that theory by abstaining for the time being. So it was hard doing double duty but we got through.

 
Hannah still has all of her regular symptoms due to weaning off the hydrocortisone. She has less headache pain than a few weeks ago, which is great, but it does still happen. On the day or day after she reduces a dose that is often when the symptoms hit the hardest, as you might imagine. We are now at zero supplemental hydrocortisone in the afternoon since Monday and are working through this drop. If this goes well then in a few days or more we will start reducing the morning amount.
 
She had her post-surgical MRI last week as an 8 week follow up. The MRI itself took awhile but overall was uneventful. The reading of the MRI by the initial tech and doctor however was not. There was a note at the bottom of the report that said "could be residual tumor that the physician should check." Naturally that made us initially uncomfortable but just after when I checked the mail Hannah had a postcard from a great church friend who has been praying for her for years saying that God is clear that Hannah is healed and will continue to be so. So we trusted in that and met with the surgical team on Zoom today.
 
The doctor and team reviewed all the images before and after and know without a doubt that what the tech saw is not remaining tumor material. It is actually packing material placed intentionally in that location after the surgery to stabilize the region for healing. It can last for many months or up to a year in many patients as the body slowly breaks the material down (it is designed intentionally to do this). So wow, that was a huge relief and great news!
 
The biggest post-surgical challenge still lies ahead as we get to the middle and end of weaning of the morning dose of hydrocortisone. That was by far the hardest part last time outside of recovering from the surgery itself. The doctors said that at this point the major healing from the surgery is done both inside her head and in her sinuses and it all looks like it is healing really well. The rest of the healing takes several months but generally speaking we are out of the woods now on any significant potential post-surgical complications.
 
Hannah continues to need full-time support as she is still too weak to walk too far and can get exhausted easily even in tasks that require more brain power while sitting. We have enjoyed a few meals out as a family on the nicer days and are doing our best to make sure she gets all the quality rest she can to continue her healing. 
 
Thank you again for all the prayers, support, and positivity!  We appreciate all of it.   
Onward to continued healing!

Joel

Quote sign

Home Recovery - Update 15

Significant Sinus Infection

Person one

March 22, 2022
 
Joel here - Last week started out ok early in the week but then Hannah got a significant sinus infection.
 
She used to get these often because with the high level of cortisol her body used to make before surgery, her body had a harder time fighting off infection. She also used to have a spot in her sinuses that would allow them to start easily that was repaired in this second surgery but will still take some time to heal. So it had the potential to still happen and it did. This was causing the headaches that she already had from weaning off hydrocortisone to get much worse.
 
It took a little back and forth with the understaffed doctors office (due to Covid and totally understandable) to get clear on the issue and next steps. Once clear the doctor ordered a specific antibiotic that can be put in sinus rinse bottles to directly target the gunk instead of flooding the whole body with antibiotics. This is a good thing.
 
That was Friday and we proactively called the compounding pharmacy that was going to make the meds and ship them to us. Yes, ship them. They are in Poulsbo Washington. We talked with a super nice woman who took the time to understand our issue. She made sure the medicine was made and shipped Friday afternoon. They already do expedited shipping so there was a chance to get it on the weekend. We got it Saturday afternoon (100% thanks to this woman being willing to listen to the patient and then go the extra mile on a Friday afternoon)!
 
So Hannah has now done rinses 5 times (morning and night) since then. Her headaches are improving and returning more to a normal hydrocortisone weaning level of headache (which still is not great but better than a significant sinus headache on top of it). She is also breathing better at night as well. 
 
We thought we were improving during Saturday with the medicine in hand but...I got some kind of small bug that knocked my energy out for the past three days.
 
Fortunately, since I am not working, I napped an hour each afternoon while Hannah was napping. That seems to be helping and I made it a lot further through Sunday.
 
So then we thought yesterday we would be out of the woods but...when I picked up Oliver after school he said his stomach was not feeling good.
  
He came home and rested while Hannah and I were napping. When I got up I went to see how he was doing he said “not good.” A few minutes later he was throwing up. After taking care of him, I thought it had passed… Until 11 PM, when I found Hannah crawling to the door because now she thought she was going to vomit (she’s too unstable to walk on her own.) Thankfully, we were able to get her everything she needed and she was able to fall asleep without getting sick.

I think I have both Hannah and Oliver covered now.
 
Today we will spend most of the time with medical professionals today. First off the Endocrinologist followed by an MRI with contrast. Did I tell you Hannah has a …. (You’ll have to tune in next time to learn about just one of the ways the fun continues with this specifically)
 
The adventure continues!
 

Joel


P.S.  Blogs to look forward to:

- Letting someone 6 weeks post brain surgery decide she wants miniature lions
- The “Hannah Pelley“ only pre-op experience, written by Hannah

Quote sign

Home Recovery - Update 14

Significant headaches, nausea and general weakness

Person one

March 13, 2022 at 11:54 AM
 
Joel here - Hannah had a better week this week than last. While she still has significant headaches, nausea, general weakness in her body and the inability to walk unassisted due to weakness and balance issues, her sinuses seem to be doing well and the first round of weaning off the hydrocortisone is complete.
 
There are several more steps down to totally get off of the hydrocortisone, but having one under the belt is a good feeling. That said, the earlier ones are easier than the later ones so the bigger challenge is still ahead of us on removing that medicine entirely. The endocrinologist is happy with her progress to date and we dropped another dose starting Thursday afternoon. This reduced the afternoon amount to what is considered a "normal amount" at that time for a person who has no cortisol production. But again that is only a small milestone alone the way to it needing any hydrocortisone at all.
 
Hannah is sleeping quite a bit every afternoon and wakes up for a few hours for dinner. Sometimes we eat in the dark in the bedroom so she can go right back to sleep. Occasionally we eat at the dinner table. Sleeping is important though as that is when your body heals the most.
 
We were able to get out for a few meals at lunchtime this week. We also got a bit of sunshine on our skin sitting in the park on the nicer days. It is good for her to get out in the fresh air (and for me too).
 
Thank you for all the prayers, good wishes and support as always!

Joel

Quote sign

Home Recovery - Update 13

A better week than last week!

Person one

March 2, 2022 at 9:49 AM
 
Hi everyone,

 
This week for Hannah has been better than the last. The quick resolution from our ENT on two tiny points in Hannah’s nose solved the bleeding issues. He also cleared debris out (normal post-surgery stuff) and as a result she is breathing much better than she was last week.
 
Our Endocrinologist started her weaning process off of the supplemental hydrocortisone last week on Wednesday. That process comes with an increase in headaches, sometimes nausea and sometimes some body pain when it is managed correctly. It is not an easy process for her at all, but it is part of getting her body to rely on its own supply again which will allow her to really fully heal.
 
The duration of the weaning is hard to gauge since it depends on how she feels and what her body says. Sometimes you can go quickly down to the next step and sometimes it takes longer at a step down before proceeding to the next one. Generally speaking, it is a process that takes months and not weeks. But since last time was very poorly managed by an inexperienced doctor (and an inexperienced us) this time should be better overall.
 
Today we follow up with the ENT and next week with the Endo to talk about the next step down in the weaning process. Thank you for all of your continued prayers and support. They are helping a ton! And thank you for continuing to reach out and ask her directly how she is doing as well. She really appreciates being able to connect with people during this time even though her timeframe for returning texts or calls does vary with how she feels that day.

Joel

Quote sign

Home Recovery - Update 12

A better week for Hannah

Person one

February 12, at 7:05pm
 
Hi all. Overall this week was a better week for Hannah than last week, which is what you would hope for after a major surgery.
 
She continues an overall upward trend and is doing considerably better at this time in the recovery cycle as compared to after the same surgery three years ago in a different hospital system. Her pain has been manageable mostly with big Tylenol and not overdoing it by walking around in the house too much. Her nausea seems to be finishing as well.
 
This week she had two of her first post-op appointments with her general practitioner (GP) and then the ENT that did the sinus portion of her surgery. Both went well and they are pleased with her progress. They both were also prepared for a worst case scenario like last time.
 
The ENT took out the packing material in her sinuses and examined all the areas impacted by the surgery. Everything looked good and as expected with no signs of complications. And Hannah was a big girl and did not almost pass out in the chair during the exam like last time.   (To be fair, they do stick metal instruments way up in your nose to look around. And yes, he did the same to me just a few weeks ago also ).
 
With the packing out she is breathing and sleeping much better than in the first week. This will go a long way to helping her heal. We are also enjoying “The Chosen” streaming series together as a family in the evenings.
 
Your prayers are most certainly helping Hannah heal and she deeply appreciates them. Here is to healing and an even better report out next weekend.

Joel

Quote sign

Home Recovery - Update 11

First week at home is off to a great start

Person one

Feb 10, 2022
 
Today was a better day. Hannah didn't have any nausea for once and was able to keep the headaches under control (with limited Tylenol!).
 
She continues to take the same dose of hydrocortisone as when she left the hospital and only has had a few days where she was fighting withdrawal pain, but the Tylenol for the headaches was enough to keep it at bay.
 
Next week, she sees the endocrinologist to see if and how they need to adjust the dosage. That's when the hardest part of the recovery begins - withdrawal.
 
Stay tuned.

Joel

Quote sign

Surgery Recovery - Update 10

Post-surgical follow-ups

Person one

February 10 at 12:03 PM
 
Hannah had her first two post-surgical follow ups yesterday and today.
 
She took an important blood test to show that other pituitary functions (critical ones) were not disturbed. Those came back normal, which is just what the doctors wanted.
 
Today the packing was removed from her nose and the ENT examined the surgical site. It is where he expects it to be at this point, which is also good.
 
So the road to recovery has a few good initial indicators which we are happy to have received.

Joel

Quote sign

Surgery Recovery - Update 9

Hannah Comes Home

Person one

February 3 at 8:14am

 

Great news this morning! The doctors are ready to release Hannah into my care so she can come home. I am going to get to the hospital at 10 AM to talk with the doctors and then bring her home. She should be much more comfortable here and actually get a chance to sleep.

Joel

Quote sign

Surgery Recovery - Update 8

Visiting now allowed!

Person one

February 2, 2022 at 1:21 PM
 
I was able to go into the hospital and see Hannah this morning.
 
They have just updated their policy for visitors today.
 
I was fortunate that I remember to check this morning so I was able to go see her for a little while.
 
She is doing much better than she was before.
 
It certainly seems better than how she was doing at this point last time.
 
They are taking good care of her down there.
 
I met her nurse and another assistant and both of them were very kind and helping her out a lot.
 
On the medical front the good news is that her cortisol has now dropped almost to zero.
 
That is what we were looking for.
 
That means the surgery worked.
 
So now they are monitoring her vitals and a Health all of which are in a very good range, all of the rest of her test come back normal and her blood pressure is even normal as well which for her is incredibly unusual.
 
The only thing left at this point it seems is to monitor the spinal fluid leak and make sure that that is slow down or done and taken care of that is a normal side effect of the surgery in a very small area close to the brain.
 
She had one last time as well but it was much more significant than this one appears to be.
 
I was sitting by her bed for an hour next to the device collecting the fluid and it barely seem to collect any.
 
So that is a very good sign as well.
 
I imagine the soonest she’ll come home is probably still tomorrow.
 
We will wait and see what the doctor say either later tonight or in the morning.
 
If she is there still tomorrow I will certainly go see her again but I hope it is to pick her up and bring her home instead

Joel

Quote sign

Surgery Recovery - Update 7

Constant interruption - No Sleep

Person one

February 1, 2022 at 7:44 PM
 
Hannah has been able to talk with us several times today including a video chat.
 
We do not know more from the doctors yet but they have taken more blood to see if her cortisol is going down.
 
She said that someone comes into her room almost every five minutes.
 
That is making it very hard for her to sleep.
 
Her headache is persisting and they were due to give her some more pain meds soon.

Joel

Quote sign

Surgery Recovery - Update 6

Foreign Language

Person one

February 1, 2022 at 11:15 AM
 
Hannah is awake and starting to come out of the post-surgery fog a bit.
 
It is a little like she is speaking a foreign language.
 
We knew she was doing a bit better when she recommended we try the Duolingo post-surgical language training so we could understand her.
 
She was able to walk 200 ft. with the PT and has a headache. Other than that I am still trying to connect with a medical professional (doctor or nurse) for a more detailed update.

Joel

Quote sign

Surgery Day - Update 5

No news and it is 11pm

Person one

January 31, 2022 at 11:16 PM

 

No new news at this point.

 

It is quite late in the evening and we have not been able to talk with Hannah yet.

 

Last time she barely could stay awake the first 24 hours after surgery so I imagine this time is similar.

 

We will give her a call in the morning to see how she is. It would be so much easier to be there but it is what it is.

Joel

Quote sign

Surgery Day - Update 4

Closing her up, tumor out,
spinal fluid leak

Person one

January 31, 2022 at 8:12 PM
 
The surgeon called and he is done.
 
The other surgeon (who did my sinuses) is finishing his work and closing up her sinuses.
 
The surgeon said she is doing well and he thinks he really cleared the tumor out.
 
They looked all around for any more and saw none. Now we wait for the cortisol to drop.
 
There was a little spinal fluid leak so they repaired that and put in a drain. He said she will be in the hospital for 2-3 days. We should be able to FaceTime her in maybe two hours.

Joel

Quote sign

Surgery Day - Update 3

Two Hours In

Person one

January 31, 2022 at 7:10 PM

 

Two hours in. The nurse called and said all is going well and she is doing good. They think another hour and a half and then it should be one of the surgeons updating me.

Joel

Quote sign

Surgery Day - Update 2

Hannah went into surgery

Person one

January 31, 2022 at 6:11 PM

 

Hannah went into surgery at 5 PM. They say the next update will be around 3 hours later.

Joel

Quote sign

Surgery Day - Update 1

Surgey Has Started

Person one

January 31, 2022 at 5:02 PM
 
This is Joel writing. I was just called from the hospital and Hannah’s surgery has finally started. Long prep apparently (5 hours). They said they will call with an update in 2-3 hours.

Joel

Hidden Illnesses © 2022 All Rights Reserved