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!
Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary. I had some issues after my first COVID-19 injection (Moderna) but not too bad. My booster was October 27, 2021. That time I was smart and updosed on my Cortef (hydrocortisone) right after the shot. My main side effects this time were chills and fatigue.
Wednesday, October 27, 2021: This time I went to a CVS inside a Target store.
I got a text from CVS asking me to click a link when I arrived at 11:00 and it gave me directions on where to go.
I was about 10 minutes early, so I had to wait a bit, even though no one was ahead of me.
The nurse asked if left arm was ok to use.
The shot was not quite as fast – I felt it a bit but I am used to giving myself daily injections so this was no biggie..
I sat in the waiting area for about 10 minutes to be sure there were no problems but no one checked on me.
This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).
I also had an appointment with my doctor about a recurring cyst. She prescribed doxycycline (antibiotic) twice a day on an empty stomach.
I cancelled my piano students for the day and took a nap for the rest of the day wearing a sweater and hoodie and under three blankets – I was so cold and a little dizzy/disoriented – I can never remember the difference between the two..
About 2 am, I got up needing to go to the bathroom and I was still so cold. I was under 3 blankets and a bathrobe.
Thursday, October 28, 2021: My arm was sorer than Monday and I was still feeling very cold and dizzy.
It was a work day so I went in but I know I nodded off at my desk a few times. I went home about 3 and fell asleep almost immediately. My DH woke up at 6 for a meeting – I had intended to sleep through it. It was at church, so I laid down on one of the pews and slept there through the meeting. DH took me home instead of going to choir rehearsal.
I skipped my growth hormone injection again.
I had no trouble sleeping this time and slept until about 10 on Friday.
Friday, October 29, 2021:I don’t know if it’s from the injection of the antibiotic but I threw up in the morning and I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold.
It was my mom’s birthday (98!) but we didn’t really get to celebrate much.
I skipped my growth hormone injection again. I didn’t fall asleep right away at bedtime and was able to read a little bit so that’s an improvement!
Saturday, October 30, 2021: I’m a little more tired than usual but ok – I woke up about 8 for my first antibiotic and didn’t take my first nap until 12:30. Then, I spent time napping through the day. I’m still cold but “normal cold” with just a sweatshirt (and socks).
My arm is achy but not really sore like yesterday.
Sunday, October 31, 2021: Just the normal tiredness. Hooray! We went back to water exercise. I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.
Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.
In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.
A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.
Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.
Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.
The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.
A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.
Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.
I ordered a new travel container for my growth hormone. The last “system” was kind of clunky. It worked fine but required too many components. This one looks like it will fit in the water bottle compartment of my backpack. I definitely don’t want another failure.
This “bottle” fit perfectly in the water bottle compartment of my backpack.
Going through TSA, I told the woman outside the scanner that I was carrying this and had paperwork. She handed me the paperwork back and put the Dison in a separate container to scan.
I went through and a TSA agent told me very rudely that I should know that I wasn’t supposed to carry liquids. I explained again that it was refrigerated, prescription medicine and I had paperwork. He had me get over to the side while he called in another agent and they started inspecting everything. The new agent said that they had never seen anything like this. There was a little thermometer on a longish strand (I wasn’t using it) but apparently, it looked like a way to detonate the whole case. After a lot of swabbing, discussion and annoyance on my part I was allowed to leave.
I decided that I will never fly with growth hormone again. It is not worth the time and hassle to me.
This case will be fantastic for train/car/walking/anything but flying.
I had previously 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.
As it turned out, I only needed it in the ho(s)tel in Copenhagen. The cruise had a sharps container in the bathroom. I had noticed that on a previous cruise and was so glad to see that they are providing this service.
I carried the actual sharps separately in my checked baggage.
After 12 hours at 8:15am Copenhagen time (2:15 pm at home) I finally removed the growth hormone from the bottle. The ice pack was still pretty hard and the GH was still cool. Next time, I’ll try the little thermometer thing (I need to charge the batteries first) and see how accurate that is.
A good solution except for airport issues. Did I mention that I will never fly with GH again?
Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary. I had some issues after my first COVID-19 injection (Moderna) but not too bad. My second injection was March 15, 2021. This time I was smart and updosed on my Cortef (hydrocortisone) right after the shot. My main side effects this time were chills, extreme thirst, fatigue…and a craving for salad(!)
Earlier in March, CVS sent out an email with a few questions to answer before confirming my March 15 appointment. On March 14, they sent me a text and when I clicked on the link, it said I had answered all the questions already. YAY
I got this information again from CVS:
On the day of your appointment:
•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.
•Bring your ID and insurance card, voucher or other coverage
•Don’t forget a face covering—wearing it throughout your visit is required
•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine
CVS tips for vaccine shots:
•Wearing short sleeves makes getting a shot easier and faster
•If you must wear long sleeves, dress in layers with the short sleeves underneath
•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.
Monday, March 15, 2021: When I got to CVS, I found that everything was very well run like before.
I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.
This time I wasn’t met by anyone at door but I knew from before where to walk following arrows on floor. Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).
There were 2 people ahead of me that I could see.It went very fast.I was in the little partitioned off area within less than 10 minutes.
The nurse asked if left arm was ok to use.
The shot was not quite as fast – I felt it a little but I am used to giving myself daily injections so this was no biggie..
The nurse said if I get a headache, take Tylenol only. She also said to stay hydrated.
I sat in the waiting area for 15 minutes to be sure there were no problemsThere were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.
This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).
Around 7 pm i noticed I had what I used to call a “lightning bolt headache”. There is pain in one spot of my head and it moves quickly down, through my brain and out. I used to get these long ago and I didn’t even know they were a thing until I just looked them andy they are called “Thunderclap Headaches”:
Severe headaches that appear suddenly like a lightning bolt are a cause for concern. This isn’t a sharp pain that goes away as suddenly as it began, but a pain that comes on like a light switch or feels as if someone has hit you in the head with a hammer.
Who knew – I thought I’d made them up. I hope this was the only one.
I could not believe how thirsty I was for the first couple days. My mouth felt like a desert so I drank lots of ice water which meant I needed to run to the bathroom a lot. Sometimes, I didn’t quite make it.
About 10 pm I started being very cold. I don’t know if that’s a symptom but I noted that on February 17, also.
My arm seems like it is more sore than last time.
About 3 am, I got up needing to get a drink of water and I was still so cold. I was under 3 blankets, wearing a hoodie and a very warm knit cap. I didn’t have the death dreams like last time but some that were work-related and all jumbled up. This has to get done before that can, but then, this other thing happens, type thing. I just got up, got a little hydrated and checked my emails.
As soon as I typed this sentence, I put my mittens back on.
Tuesday, March 16, 2021: My arm was sorer than Monday and I was still feeling cold, sleeping off and on. Still very thirsty.
I skipped my growth hormone injection again.
I had trouble sleeping, especially if I tried to roll over.
Wednesday, March 17, 2021: We didn’t go to water exercise. I planned that this time, based on my reaction to the first shot.
I had a little headache, dizzy, congested, very tired, lots of brain fog, thirsty.I slept more until about 1 pm and I cancelled piano lessons for the day.
After cancelling lessons, I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold.
At that point, I realized I hadn’t eaten for 2 days or had any coffee!.
For reasons that are very strange to me, I started craving tossed salad, specifically one from a certain local restaurant. I have never in my life craved salad.
I had some dinner (I was surprised that I could eat any) at 9:25 and did my growth hormone injection.
I went to bed at 11 pm. Tossed and turned all night.
Thursday, March 18, 2021: I’m a little more tired than usual but ok. I spent time napping and working alternated through the day. My boss called and he’d just had his Johnson and Johnson shot on Tuesday. The call was pretty funny because we both were brain foggy and trying to think of words. His vaccine is the one-dose type – he was glad to get it but found it weird that he could actually feel the medicine going in. That sounds to me more like it was injected into a vein than a muscle.
My DH went out to Domino’s and got some dinner – and finally, I got that salad!
Friday, March 19, 2021: Just the normal tiredness. Hooray! We went back to water exercise. I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.
Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.
In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.
A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.
Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.
Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.
The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.
A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.
Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.
Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary. I had some issues after my first COVID-19 injection (Moderna) but not too bad. My second injection will be March 15.
January 12, 2021 my Mom’s doctor called and offered her the vaccine but she didn’t want it. She said she didn’t go anywhere. True but my DH and I do – and she has a friend visit once a month.I joked to a friend that I could put on a wig and go as her since we have the same first name.
I have been doing the COVID-19 Patient Monitoring System through my doctor’s office since it was first offered.Just a few boxes of how I’m feeling, if I wore a mask and so on.I am a strong believer in helping to participate in medical trials, as I mention below.This one is very easy and takes about a minute out of my day.Easy-peasy.
I’ve been on the Fairfax Waiting List since January 19, 2021.As of right now, they are still scheduling people from January 18 – I read somewhere that 41,000-some people registered on the 18th, so it may be a while to get to my date.They have set up an interesting dashboard to track how things are going– https://www.fairfaxcounty.gov/health/novel-coronavirus/vaccine/data
I kept the CVS link open and checked it every morning. Everything was full until Saturday, February 13.I was able to register at about 5 am.When I went back about 20 minutes later, everything was gone.
CVS sent out an informative email with directions, dates, ics file to easily add to calendar,
On the day of your appointment:
•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.
•Bring your ID and insurance card, voucher or other coverage
•Don’t forget a face covering—wearing it throughout your visit is required
•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine
CVS tips for vaccine shots:
•Wearing short sleeves makes getting a shot easier and faster
•If you must wear long sleeves, dress in layers with the short sleeves underneath
•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.
And a short survey, which I took – just add up to 5 stars and write a short paragraph.
Monday, February 15, 2021: When I got to CVS, I found that everything was very well run.
I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.
I was met by someone at door who checked my name – I showed him my phone screen – he showed me where to walk following arrows on floor. Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).
There were 4 people ahead of me that I could see.It went very fast.I was in the little room within less than 10 minutes.
The nurse asked if left arm was ok to use.
She told me to treat the little quarantine form like gold.Take a picture on my phone, just in case.Maybe laminate after second shot.Keep it with passport.
She said that old folks (like me!) didn’t have as many issues after second shot.
The shot was very fast – I never felt it.
The nurse said if I get a headache, take Tylenol only. I said that was all I could take anyway because I have only one kidney.
I sat in the waiting area for 15 minutes to be sure there were no problemsThere were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.
I was glad to see that it was Moderna (MRNA) although I would have taken either.I have a long-standing issue with the other drug company, unrelated to COVID vaccines.
I posted on FB that I had done my first injection and a friend told me aboutregistering at vsafe.cdc.gov for them to keep track of me after the vaccination. I signed up for that right away – and I noticed that CVS had also given me that link.
About 12 hours later (3:30 am) I got up to go to the bathroom and noticed that my arm was a little sore. No biggie.
Tuesday, February 16, 2021: I just got my first dose of Moderna yesterday – sore arm, so far.
The nurse told me yesterday that older people like myself (I’m 72) had fewer side effects since we had been exposed to more things over the years.I’m not sure how accurate that is but I’ll hold on to that hope until I get my second dose on March 15!
Wednesday, February 17, 2021: I had weird dreams overnight but I got up about 4:00 am.I did some work and fell back asleep until 10:15.
We didn’t go to water exercise. I decided at the very last minute, walking out the door. Reaction to Monday shot? I had a little headache, dizzy, congested, very tired.I should have taken more cortisone at this time but didn’t remember until 8:30 pm.
I slept more until about 2 pm and had very weird dreams – I don’t know if the dreams are part of it or not but I reported them to the safe.cdc.gov questionnaire.
I cancelled piano lessons for the day.I wrote to my students:
I am so sorry but I need to cancel today’s lesson. I had the first COVID vaccination on Monday afternoon. I was feeling fine yesterday so I assumed that I wasn’t going to have any side effects but they caught up with me today. It’s just a headache , a bit of congestion and fatigue (I’ve been sleeping all day so far) but I don’t think I would be at my best during XXX’s lesson.
See you next week…
After cancelling lessons, I went back to sleep until time for Pender’s 7 pm Ash Wednesday service. I was felling cold but I don’t know if it was chills or really a cold. I started coughing a little.
At night, I remembered I should have up-dosed. I told my DH that night if he ever noticed me like this again, it was the perfect time to tell me to stress dose. It never occurred to me during the day.
At that point, I realized I hadn’t eaten all day.I had dinner (I was surprised that I could eat it) at 9:25 and did my growth hormone injection.
I went to bed at 11 p.
Thursday, February 18, 2021: I’m a little more tired than usual but ok. I spent time napping and working alternated through the day.
Friday, February 19, 2021: Just the normal tiredness. Hooray!
Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.
In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.
A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.
Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.
Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.
The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.
A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.
Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.
Meeting Number (Access Code): 177 542 2496 Your phone/computer will be muted on entry.
Slides will be available on the day of the talk here
There will be plenty of time for questions using the chat button. Meeting Password: pcos
For more information, email us at mail@goodhormonehealth.com
For me, it’s more that one day out of the year. Each and every day since 1987, I tell anyone who will listen about Cushing’s. I pass out a LOT Cushing’s business cards and brochures.
My husband also passes out cards and brochures.
Adding to websites, blogs and more which I have maintained continuously since 2000 – at mostly my own expense.
I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.
I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.
For me, it’s more that one day out of the year. Each and every day since 1987, I tell anyone who will listen about Cushing’s. I pass out a LOT Cushing’s business cards and brochures.
Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.
I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.
I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.
Today is the 30th 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.
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.
MaryO'Medical 