Bee’s Knees 5

This is a continuation of an ongoing knee issue.  It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future.

What’s happened since the “quick kneecap recap” below:

After my April 22 injection, things were mostly better for a while.

May 12, I went to a Celebration of Life service where the chairs were so incredibly uncomfortable.  They looked really nice but… I had trouble sitting.  I’d have to bend part way, put my arms on the armrest and fall the rest of the way.  While seated, it was a weird angle, so I didn’t like to sit but standing back up was very difficult.  My knees were stiff and a pain through the next week.

Things were okish for a while.  June 7, we went to NYC and did a lot of walking/stairs which always makes things a little worse.  Around this time, my right leg started having an aching (bone?) pain.  I’m hoping that it’s “just” sciatica.

June 18, it was time for another stupid accident.  I got home from work, put my car in gear and the emergency brake on.  I stepped out of my car with my left foot planted on the driveway.  Somehow, the car rolled backward, twisting my knee.  Three Tylenol and a brace.  Of course, it was one of the braces I’m allergic to so I then had to take a Benadryl.  I’ll find one of my non-allergenic braces a little later.

June 22 – back to “normal” knee pain. Rest, keeping my knee up, a non-allergenic brace and Tylenol all helped.

 

A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 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.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/

May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex-free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.

 

 

September 12, 2018, I got my first cortisone shot (Kenalog 40 mg/mL suspension for injection).  I did notice some sleep issues that first night, probably since I had the cortisone so late in the day

It was wonderful and got me through a cruise to Maine and Canada.  In Bar Harbor, I overheard some women talking about their knees.  One said that the cortisone didn’t work for her at all and she was going to have surgery <uhoh> and another said that they’d have to cut the nerves around her knee.  I’ve asked a couple doctors and Dr. Google.  No one seems familiar with that idea at all.

It also got me through our son’s wedding in October, including climbing stairs! 

It also produced one of my only smiling photos, ever!

December 5, 2018, I saw my endo, Dr. Roberto Salvatori, and “confessed” that I’d had this injection.  We’d talked about this before and how it might react with my daily Cortef and Omnitrope shots.  He hadn’t thought I should get this.  But, since it was a done deal, he said to monitor how I was feeling with the additional cortisone.

By then, the knee pain had returned, anyway, so no issues

March 27, 2019, I found a new no-neoprene, no-latex brace on amazon. “Hinged Knee Brace: Shock Doctor Maximum Support Compression Knee Brace – For ACL/PCL Injuries, Patella Support, Sprains, Hypertension and More for Men and Women”
This is very good – much stronger than the one I mentioned below on September 8, 2018.  The only real issue I have with it is that it bent, so I have to bend my knee to put it on.  The other one is completely straight and just wraps around.

The older, wrap-around does have a tendency to slip sometimes so I make it tighter than I probably should.

I do love that they’re making products for people with latex and neoprene allergies,  though!

 

April 8, 2019, I was supposed to get my second cortisone shot in time for Easter but there were car issues at the last minute.

On the way to water aerobics, I was having trouble shifting my car. I’d have to actually turn the ignition off to do so.  Not fun!

When I got home, Tom was sure he could do it…but he couldn’t either.  He drove it in to Advanced Automotive.

One of the Advanced Automotive mechanics test-drove the car and then found the bolts holding the brake master cylinder to the firewall had loosened.  

Could have been even more serious!

They fixed that for free since they were the last people to work on the car and maybe(???) didn’t tighten the bolts completely the first time.

Car runs like new now 🙂

So, I missed my first appointment but got a “new” car.

April 10, 2019, I broke down and bought this leg pillow.  I’d seen similar ones on TV but I got this on amazon (of course!). Aocome Knee Pillow for Side Sleepers Knee Pillow Ergonomically Designed for Back Pain, Sciatic Nerve Pain Relief, Leg Pain, Pregnancy, Hip and Joint Pain – Memory Foam Leg Pillow.

This is one of the better things I’ve gotten in my journey.  It’s very nice, soft – and blue!

I’m of 2 opinions about the little strap – it makes it easy to keep it “attached” to my knee but I have to bend my knee to put it on in the first place.

I think over time, the elastic may stretch out, making it harder to keep on.

The whole is covered with a washable velour-like fabric.  The price was reasonable enough that I could buy another one if/whey that strap expands too much.

I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.

I also found that it’s sometimes better to sleep on the sofa.  When I roll over, the pain from my knee often wakes me up again.  Lying on the sofa makes it harder to roll over.

During this time, my pain was so bad that I was considering surgery – later. April 22, 2019, I got my second cortisone shot (Kenalog 40 mg/mL suspension for injection).  This time it was a new doctor (same practice), so I had to explain everything (knee history, Cushing’s history, kidney cancer history) to her.

I was unsure how often I could get his shot because I knew I’d want/need one before our cruise next September.  These look like places I will want to walk!

She said that the cortisone stayed mostly in the knee area so I could get one every 3-4 months!  I could have saved myself a lot of issues in early 2019 had I known that   So, I’ll go in the early part of September for #3 and maybe go on a 4-month schedule.

For reasons known only to her, she did the injection in my inner knee-cap.  Even with the lidocaine, it was a bit more painful there than I remember the other one – or maybe I just blacked that out.

She thought that the water aerobics I do 3 times a week (plus hot tub afterward) was a good thing.

Death Dreams.  I don’t think I’ve posted about these before but I used to have them quite often.  I hadn’t had any for a long time but I had 2 within 12 hours of getting the injection.  The first was about 6:00 PM.  I’d fallen asleep for a nap and DH was talking to me (in real life).  I kept trying to ask him which Easter service (that had been the day before) was coming up next because I needed some kind of medication to get through the service.  I know my words to him were confused and garbled but I was sure I was going to die if he didn’t help me.

The next was similar about 3:00am on 4/23/19.  I dropped my Kindle on the floor, which sort of woke me up but I wasn’t sure what the noise was.  I just knew I needed to take “something” to stay alive and wasn’t sure what that was.  I looked through my phone for ideas and checked the meds by my bedside.  Nothing.  Finally, I woke up more completely and realized it had been another dream.  I also picked up my Kindle and went back to sleep for another hour.

This morning (4/23) there’s still a bit of discomfort but I can deal with that.  I also had a bit of trying to run to the bathroom a little quicker than usual.  I also don’t remember that from before but I assume it will go away soon.

I hope this shot lasts nearly 3 months, too!  That would take me to mid-July. 🙂

I also hope that my sleep gets better than my March-April records with only one 8-hour sleep (counting naps!).:

 

Starting September 2, 2019, if I get 4 shots a year they would be: September, December,  March, June, September.

Starting September 2, 2019, if I get 3 shots a year they would be: September, January, May,  September

 

Stay tuned for…

Bee’s Knees 4

This is a continuation of an ongoing knee issue.  It started with Bee’s Knees and went on to Bee’s Knees Continued.  I’m hoping to end my knee pain in the very near future.

What’s happened since the “quick kneecap recap” below:

September 12, 2018, I got my first cortisone shot (Kenalog 40 mg/mL suspension for injection).  I did notice some sleep issues that first night, probably since I had the cortisone so late in the day

It was wonderful and got me through a cruise to Maine and Canada.  In Bar Harbor, I overheard some women talking about their knees.  One said that the cortisone didn’t work for her at all and she was going to have surgery <uhoh> and another said that they’d have to cut the nerves around her knee.  I’ve asked a couple doctors and Dr. Google.  No one seems familiar with that idea at all.

It also got me through our son’s wedding in October, including climbing stairs! 

It also produced one of my only smiling photos, ever!

December 5, 2018, I saw my endo, Dr. Roberto Salvatori, and “confessed” that I’d had this injection.  We’d talked about this before and how it might react with my daily Cortef and Omnitrope shots.  He hadn’t thought I should get this.  But, since it was a done deal, he said to monitor how I was feeling with the additional cortisone.

By then, the knee pain had returned, anyway, so no issues

March 27, 2019, I found a new no-neoprene, no-latex brace on amazon. “Hinged Knee Brace: Shock Doctor Maximum Support Compression Knee Brace – For ACL/PCL Injuries, Patella Support, Sprains, Hypertension and More for Men and Women”
This is very good – much stronger than the one I mentioned below on September 8, 2018.  The only real issue I have with it is that it bent, so I have to bend my knee to put it on.  The other one is completely straight and just wraps around.

The older, wrap-around does have a tendency to slip sometimes so I make it tighter than I probably should.

I do love that they’re making products for people with latex and neoprene allergies,  though!

 

April 8, 2019, I was supposed to get my second cortisone shot in time for Easter but there were car issues at the last minute.

On the way to water aerobics, I was having trouble shifting my car. I’d have to actually turn the ignition off to do so.  Not fun!

When I got home, Tom was sure he could do it…but he couldn’t either.  He drove it in to Advanced Automotive.

One of the Advanced Automotive mechanics test-drove the car and then found the bolts holding the brake master cylinder to the firewall had loosened.  

Could have been even more serious!

They fixed that for free since they were the last people to work on the car and maybe(???) didn’t tighten the bolts completely the first time.

Car runs like new now 🙂

So, I missed my first appointment but got a “new” car.

April 10, 2019, I broke down and bought this leg pillow.  I’d seen similar ones on TV but I got this on amazon (of course!). Aocome Knee Pillow for Side Sleepers Knee Pillow Ergonomically Designed for Back Pain, Sciatic Nerve Pain Relief, Leg Pain, Pregnancy, Hip and Joint Pain – Memory Foam Leg Pillow.

This is one of the better things I’ve gotten in my journey.  It’s very nice, soft – and blue!

I’m of 2 opinions about the little strap – it makes it easy to keep it “attached” to my knee but I have to bend my knee to put it on in the first place.

I think over time, the elastic may stretch out, making it harder to keep on.

The whole is covered with a washable velour-like fabric.  The price was reasonable enough that I could buy another one if/whey that strap expands too much.

I have a tendency to roll over in my sleep and found that I can use it as a little pillow to raise just my left leg instead of between both knees when sleeping on my side.

I also found that it’s sometimes better to sleep on the sofa.  When I roll over, the pain from my knee often wakes me up again.  Lying on the sofa makes it harder to roll over.

During this time, my pain was so bad that I was considering surgery – later.

April 22, 2019, I got my second cortisone shot (Kenalog 40 mg/mL suspension for injection).  This time it was a new doctor (same practice), so I had to explain everything (knee history, Cushing’s history, kidney cancer history) to her.

I was unsure how often I could get his shot because I knew I’d want/need one before our cruise next September.  These look like places I will want to walk!

She said that the cortisone stayed mostly in the knee area so I could get one every 3-4 months!  I could have saved myself a lot of issues in early 2019 had I known that   So, I’ll go in the early part of September for #3 and maybe go on a 4-month schedule.

For reasons known only to her, she did the injection in my inner knee-cap.  Even with the lidocaine, it was a bit more painful there than I remember the other one – or maybe I just blacked that out.

She thought that the water aerobics I do 3 times a week (plus hot tub afterward) was a good thing.

Death Dreams.  I don’t think I’ve posted about these before but I used to have them quite often.  I hadn’t had any for a long time but I had 2 within 12 hours of getting the injection.  The first was about 6:00 PM.  I’d fallen asleep for a nap and DH was talking to me (in real life).  I kept trying to ask him which Easter service (that had been the day before) was coming up next because I needed some kind of medication to get through the service.  I know my words to him were confused and garbled but I was sure I was going to die if he didn’t help me.

The next was similar about 3:00am on 4/23/19.  I dropped my Kindle on the floor, which sort of woke me up but I wasn’t sure what the noise was.  I just knew I needed to take “something” to stay alive and wasn’t sure what that was.  I looked through my phone for ideas and checked the meds by my bedside.  Nothing.  Finally, I woke up more completely and realized it had been another dream.  I also picked up my Kindle and went back to sleep for another hour.

This morning (4/23) there’s still a bit of discomfort but I can deal with that.  I also had a bit of trying to run to the bathroom a little quicker than usual.  I also don’t remember that from before but I assume it will go away soon.

I hope this shot lasts nearly 3 months, too!  That would take me to mid-July. 🙂

I also hope that my sleep gets better than my March-April records with only one 8-hour sleep (counting naps!).:

 

Starting September 2, 2019, if I get 4 shots a year they would be: September, December,  March, June, September.

Starting September 2, 2019, if I get 3 shots a year they would be: September, January, May,  September

Stay tuned for…


A quick kneecap recap:

From https://maryomedical.com/2013/02/18/icy-days-and-mondays/ January 28, 2013:

 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.

From https://maryomedical.com/2016/02/28/bees-knees/

January 2016.

I fell in the bathroom in the middle of the night and hit my left knee on the tub. I used a brace for a few days and it seemed better.

Around January 27-28, 2016, I was in Walmart and had to get a produce bag that was way over my head.  I had to stand on tiptoe…and my knee felt like something ripped.  Thankfully, I had a cart available to use as a temporary crutch.

Got home, used the brace, took Tylenol but the pain got worse.

Thursday, I drove home from choir at church.  My car is a manual so the act of using the clutch, extending my foot that way, made everything worse again.

Friday, we went to the Limp-In Clinic in Greenbriar.   That doctor was going to prescribe Cortef or NSAIDs but I couldn’t take either due to my history of Cushing’s (Cortef) and kidney cancer (NSAIDs).  He prescribed Vicodin and sent me for an x-ray.

January 31, 2016, I got very itchy, presumably from Vicodin so I stopped that and started taking Benadryl for the itchiness.

February 2, 2016, I went back to the clinic for the results of x-rays and  I mentioned the itchiness.  Since I have very limited meds available to me, he recommended an Orthopedist.  I called him when I got home and he didn’t take my insurance.  I tried another doctor who supposedly took my insurance but they didn’t.

February 7, 2016, I really needed the sleep so I took half a Vicodin.  No pain and no itching.  HOORAY!

February 8, 2016, I saw my regular doctor.   She thinks it’s a possible “lateral collateral ligament vs meniscus tear”.

I was surprised that she thought my knee was swollen but one of my therapists showed me later that it was.

She referred me to Physical Therapy (PT) and prescribed Ultram. As of this writing, I haven’t used that yet.

February 11, 2016, 8:30 am  My first appointment with PT.  Since my blood pressure was high, we mostly did assessments.  I had a main therapist and a student. They had to use 3 types of BP machine to do this.

I bent my knee and they took measurements with a caliper.  I lay on my front and they manipulated my knee to see what happened. They also concluded that it was a lateral collateral ligament.

A suggestion – to rest my foot on the walker without the brace and see if gravity helps my knee straighten out.

After this, there was more pain than before but I know this is the right thing to do.

February 13, 2016.  My leg feels a bit better.  I had the brace off last night and almost straightened my knee out.

Somewhere in this period, I learned how to manually move my kneecap (patella) around.  I saw my day 1 therapist again and he said my knee was angry.  Swollen, angry, whatever.  I just want a normal non-hurting knee!

One of the therapists had me doing a stretching exercise and my hip was out of kilter (everything is attached!) since I’ve been walking with my knee bent.  So she manipulated that back into alignment.

February 22, 2016, A new-to-me therapist had me do an exercise with a basketball under my knee, pointing my toe to the left.  I didn’t remember doing that before but she said I had.  Hmmm…

That hurt too much so we moved to a foam roll under my knee.  It was still uncomfortable but I did it, a bit too much, apparently.

Turns out this exercise hurt my “VMO”, which is short for Vastus Medialis Oblique.

“This is the most important quad muscle and arguably the most responsible muscle for knee stability. The VMO’s main function is to control knee extension…” 

February 25, 2016,  My VMO pain still hurt.  I told my regular therapist about it and she worked on it some.  She concurred that my knee was swollen.

February 26, 2016,  I went all day with no brace at all!!  A bit of pain but manageable.

February 28, 2016, and I haven’t worn the brace since the 27th. I still need assistance to get up from sitting but I can see huge improvement.

I still have 6 more PT sessions, finishing on March 16, but I’m really impressed with what they’ve done for me.  I still have twinges of pain and I don’t plan on stepping on tiptoe anytime soon but I can tell I’m on the right track.

March 8, 2016 at 9:48 am

Physical Therapy is sapping what little energy I had 

 I can tell it’s working but I am even more exhausted all the time. I’m taking extra Cortef but it’s not enough…

From https://maryomedical.com/2016/05/05/bees-knees-continued/

May 5, 2016

My left knee is still bothering me, even after doing Physical Therapy since January. <sigh>

It seems to get better, then something happens and it’s back to pain again.  When we were on a trip to New York a month ago, we walked a lot and climbed so many stairs, I had to buy a new brace.

Today is supposed to be my final PT but I don’t think I’m ready.

When this clinical trial came to my email, I just went through the whole survey for this but there was no doctor nearby:

Osteoarthritis Research Studies. Knee and hip arthritis studies enrolling now. No-cost medication. http://curec.lk/1VL5hu9


Fast forward to September 5, 2018

My knee has been bothering me off and on for a while.  I’ve been taking water aerobics and was careful not to do anything that would hurt my knee.  The hot tub afterward was a great place to aim hot water jets at my knee – that would numb any pain for a while.

I realized that the neoprene braces were making me itch so I actually found one with no neoprene – Hooray! “All BioSkin material is hypoallergenic. Latex-free and Neoprene free.”  Hooray again!

This last week or so, the pain has been getting worse again so I decided to try a new doctor.  This one seems like maybe – just maybe – he’ll fix things.

He said: “Your previous knee injuries made sense for pain but this spontaneous onset of medial knee pain is a bit strange.  I can only do a limited examination due to the pain and difficulty bending, but it seems to be over the distal insertion of the VMO (quadriceps muscle) with possible inclusion of some joint line tenderness on that same side.

I’d like for you to use ice packs in your knee brace at least three times a day with the goal of calming down the inflammation.

My goal with getting you to sports medicine next week is to re-evaluate it, hopefully with better ability to examine and flex. It may need ultrasound evaluation and/or steroid injection. Since you cannot take NSAIDS, I suggest trying the Ultram that your previous doctor gave you so you can sleep.”

So, next Wednesday, I have an appointment with sports medicine – I might be moving forward. Or not.

 

 

Adventures with Human Growth Hormone: Travelling (Flying)

This is from a post on my travel blog.

Just after 3:00 pm Friday August 25, 2017 we took an Uber to Dulles Airport

Going through TSA there was no issue with my refrigerated growth hormone injections.

The Omnitrope was in its own case from the manufacturer.

I put that in that new iCool weekender case I’d bought for this trip.  I chose this one for these reasons:

  • For vials or pens (insulin, growth hormones, L-Thyroxin, polyarthritis medication)
  • Keeps your medication between 36°F – 46°F (2°C – 8°C) for 12 hours (I knew this trip would be about 20 hours, start to finish)
  • The iCool bag uses a new generation of chemical gel pack that generates very little condensation and have a slower thawing period than traditional ice packs. This allows patients with diabetes or those using temperature sensitive medications to transport their medications for a longer cooling period. The iCool Weekender keeps insulin or other temperature sensitive medications cool for up to 12 hours at 36°F – 46°F (2 to 8°C). This bag can carry either pens or vials. There is enough space inside to store needles.

 

Then I had put the gel pack from the iCool frozen solid and put that in a small Rubbermaid lunch bag with 2 thin ice packs,  1 on top and 1 on the bottom.  If you don’t want to read all the way to the end, this system kept the growth hormone cold for the 20 hours going and returning but the 2 thin blocks had completely thawed.  The inner iCool was mostly frozen and the growth hormone was still cool.

Hooray!

I had the sharps separately in a little square container with just enough for the week.  I used the side pocket of the lunch bag to store my doctor’s note and clipped the whole thing with a carabiner to my backpack.

I also found a smallish sharps disposal container, although this was still kind of big for my needs, it was better than taking the whole huge one that’s in my bathroom.  This worked well and I have enough for 5 more trips 🙂

And that’s about it for medical information, at least until we get to Heathrow 🙂

Then, since we were coming from outside the UK we had to leave security area and go through TSA again.

I told the agent I was carrying refrigerated medications and she read the doctor’s letter.  Everything seemed like it was going well until I was flagged for more screening 😦  I had to take all the stuff out of my carefully packed Growth Hormone bag and everything else was taken out of my backpack to be swabbed down.

After 20 hours at 4:15pm  (11:15 am at home) I finally removed the growth hormone from the cases.  The 2 ice packs had melted but the GH in its weekender case was still cool and that gel pack mostly frozen.  A good solution except for issues at Heathrow.

Adventures with Human Growth Hormone

I’ve been dealing with Cushing’s since 1983.  The after effects of pituitary surgery since 1987, kidney cancer since 2006.  It’s time I felt better, already!

From 1999 to today,  not-so-quick recap from my bio:

1999 ~ Many people are now finding that they need HgH after pituitary surgery, so an Insulin Tolerance Test was performed. My endocrinologist painted a very rosey picture of how wonderful I’d feel on Growth Hormone. It sounded like a miracle drug to me!

I was only asked to fast before the ITT and to bring someone with me to take me home. There is no way I could have driven home. I got very cold during the test and they let me have a blanket. Also, though, lying still on that table for so long, my back hurt later. I’d definitely take – or ask for – a pillow for my back next time. They gave me a rolled up blanket for under my knees, too.

I don’t remember much about the test at all. I remember lying very still on the table. The phlebotomist took blood first, then tried to insert the IV (it took a few tries, of course). Then the endo himself put the insulin in through the IV and took the blood out of that. I remember the nurse kept asking me stupid questions – I’m sure to see how I was doing on the consciousness level. I’d imagine I sounded like a raving lunatic, although I believed that I was giving rational answers at the time.

Then everything just got black…I have no idea for how long, and the next thing I knew I was becoming aware of my surroundings again and the doctor was mumbling something. They gave me some juice and had me sit up very slowly, then sit on the edge of the table for a while. When I thought I could get up, they gave me some glucose tablets “for the road” and called my friend in. I was still kind of woozy, but they let her take me out, very wobbly, kind of drunk feeling.

My friend took me to a close-by restaurant – I was famished – but I still had trouble with walking and felt kind of dazed for a while. When I got home, I fell asleep on the sofa for the rest of the day.

But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! It was so wonderful and I hoped that that was from the HgH they gave me to wake me up.

2001 ~ I had the ITT this morning. I don’t get any results until a week from Thursday, but I do know that I didn’t recover from the insulin injection as quickly as I did last time. The endo made a graph for my husband of me today and a “normal” person, although I can’t imagine what normal person would do this awful test! A normal person’s blood sugar would drop very quickly then rise again at about a right angle on the graph.

I dropped a little more slowly, then stayed very low for a long time, then slowly started to rise. On the graph, mine never recovered as much as the normal person, but I’m sure that I did, eventually.

The test this time wasn’t as difficult as I remember it being, which is good. Last time around, I felt very sweaty, heart pounding. I don’t remember any of that this time around. I do know that I “lost” about an hour, though. The phlebotomist took the first blood at 9:15, then the endo injected the insulin and took blood every 15 minutes after that. I counted (or remembered) only 4 of the blood draws, but it was 11:30 when they told me that my sugar wasn’t coming up enough yet and I’d have to stay another 30 minutes. It actually ended up being another hour.

Kim, the phlebotomist, asked me if I got a headache when they “crashed me” and I have no recollection of any of that.

Like last time, I was very, very cold, even with the blanket and my left arm – where the heplock was – fell asleep. Other than that – and my back hurting from lying on one of those tables all that time this wasn’t as bad as I remembered.

So, I waited for 10 days…

September 2004 ~ My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests. From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 10 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I’m going back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He has said that I will end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

October 2004 ~ I had cortrosyn and arginine-GHRH stimulation test at Johns Hopkins. They confirmed what the doctor learned from reading my 4 year old records – that I’m both adrenal-deficient and growth hormone-deficient. I started on my “sprinkle” (5 mg twice a day) of Cortef now and my new doctor has started the paperwork for GH so maybe I’m on my way…

November 2004 ~ Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we’ll see on Monday what to do about an appeal. My local insurance person is also working on an appeal, but the whole thing sounds like just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving. I guess that’s not going to happen, at least by the 2004 one.

As it turns out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Am I going to be a ginuea pig again? The new GH company has assigned a rep for me, has submitted info to the pharmacy, waiting for insurance approval, again.

December 2004 ~ I finally started the Growth Hormone last night – it’s like a rebirth for me. I look forward to having my life back in a few months!

January 2005 ~After a lot of phone calls and paperwork, the insurance company finally came through at the very last minute, just as I needed my second month’s supply. Of course, the pharmacy wouldn’t send it unless they were paid for the first month. They had verbal approval from the insurance, but the actual claim was denied. Talk about a cliff hanger!

Later January 2005 ~I’ve been on the growth hormone for 7 weeks now, and see no change in my tiredness and fatigue. A couple weeks ago, I thought there was a bit of improvement. I even exercised a little again, but that was short lived.

I feel like my stomach is getting bigger, and Tom says my face is looking more Cushie again. Maybe from the cortisone I’ve been taking since October. I can’t wait until my next endo appointment in March to increase my GH. I want to feel better already!

March 2005 ~ My IGF-1 was “normal” so I can’t increase the GH.

September 2005 ~ I don’t see any benefit with the growth hormone.

January 2006 ~A new year, a new insurance battle. Once again, they don’t want to pay so I have to go through the whole approval process again. This involves phone calls to Norditropin (the company that makes the GH), my endo, iCore Specialty Pharmacy (the people who prepare and ship the meds) and my insurance company. This is turning into a full-time job!

April 14, 2006 ~I just went to see my endo again on Thursday to see how things are. Although I know how they are – I’m still tired, gaining a little weight, getting some red spots (petechiae) on my midsection. He also noted that I have a “little” buffalo hump again.

My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I’m off GH again for 2 weeks, then I’m supposed to be retested. The “good news” is that the argenine test is only 90 minutes now instead of 3 hours.

April 27, 2006 ~ Wow, what a nightmare my argenine retest started! I went back for that. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go home after the test.

The next day I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My open radical nephrectomy was May 9, 2006, in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

August 19, 2006 ~ I’ve been even more tired than usual now that I’m off GH.  But I also had cancer.

October 2006 ~ I went to see my Johns Hopkins endo again last week. He doesn’t “think” that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

I was so stupid way back in 1987 when I thought that all my troubles would be over when my pituitary surgery was over.

2016/2017 ~ So.  My 10 year kidney cancer anniversary passed, then 11.

May 4, 2017 ~ My endo at Hopkins and I talked about maybe trying growth hormone again.  We tested my levels locally and – surprise – everything is low, again.

So, we started the insurance routine again.  My insurance rejected the growth hormone I took last time around.  I just love how someone, a non-doctor who doesn’t know me, can reject my person endocrinologist’s recommendation.  My endo who specializes in Growth Hormone, who runs clinical trials for Johns Hopkins on “Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.”

That insurance person has the power over the highly trained physician.  Blows my mind.

But I digress.  My doctor has agreed to prescribe Omnitrope, the insurance-guy’s recommendation.

June 14, 2017 ~ I got a call from my insurance.  They “may” need more information from my doctor…and they need it in 72 hours.

My doctor’s nurse says that they have to refer this to their pharmacy.

June 15, 2017 ~ I got a call from the Omnitrope folks who said they will need approval from my insurance company <sigh> but they will send me a starter prescription of 30 days worth.

June 16, 2017 ~ I got a call from the Specialty Pharmacy.  They’re sending the first month supply on Tuesday.  Estimated co-pay is $535 a month.  I may have to rethink this whole thing 😦   We sure don’t have an extra $6000.00 a year, no matter how much better it might make me feel.

June 19, 2017 ~ The kit arrived with everything but the actual meds and sharps.

June 20, 2017 ~ The meds and sharps arrived along with the receipt.  My insurance paid nearly $600 – and they took my copay out of my credit card for $533.

I still have to wait for the nurse’s visit to use this, even though I’ve used it in the past.

I’ve been doing some serious thinking in the last 24 hours.  Even if I could afford $533 a month for this, should I spend this kind of money on something that may, or may not, help, that may, or may not, give me cancer again.  We could do a couple cruises a year for this much money.  I’ve pretty much decided that I shouldn’t continue, even though I haven’t taken the first dose of this round.

What will happen?

Stay tuned!