CoTT 2 House of Cards

[dughlas]

20 hours ago, Bucket1 said:

He has the drone footage Clo sent him

See, B knows.

[dughlas]

20 hours ago, Page Scrawler said:

I hope you get well soon, Dugh.  The symptoms sound awful. Is it possible that you might be having an allergic reaction?

No, unfortunately this are some of the more common side effects. I just hadn't dealt with such extremes. Typically, a couple of days and I was back to normal, if I was ever "normal". Last evening my bp was 163/114, 2 hours after taking my evening meds. This morning it was down to 148/100. Better but still fifteen points over my usual readings. I'll continue monitoring it. I have an appt with my nephrologist in 2.5 weeks but will be at the medical campus early Monday am to see my urologist. If things stay like this I might just stop by and put a bug in the doc's ear. I haven another infusion in 2 weeks. I like to have a better handle on things before then.

[Albert1434]

Aloha All

[Albert1434]

[Albert1434]

[Bucket1]

Good night everyone

 

[Albert1434]

Aloha Man

[Mancunian]

21 minutes ago, Albert1434 said:

Aloha Man

Aloha Albert, hope you're having a good day my friend 

[Albert1434]

Aloha All Gary

[Headstall]

Hey, all!  

[raven1]

Hi All!  It's bedtime for me.  Have a great day!

[Mancunian]

1 minute ago, raven1 said:

Hi All!  It's bedtime for me.  Have a great day!

G'night my friend, have a good night's rest. I may have a nap myself. 

[Drew Espinosa]

Howdy bullies!   

[Headstall]

5 minutes ago, Drew Espinosa said:

Howdy bullies!   

That's Trollocs to you.    

Hey, puddin'  

[spike382]

6 minutes ago, Drew Espinosa said:

Howdy bullies!   

Hey Nong, hope you’re feeling better!

[Drew Espinosa]

3 minutes ago, Headstall said:

That's Trollocs to you.  

That's no way to call yourself, Nynaeve!   

5 minutes ago, spike382 said:

Hey Nong, hope you’re feeling better!

Hey, Phi!  And yep, I'm feeling better!

 

[spike382]

16 minutes ago, Drew Espinosa said:

That's no way to call yourself, Nynaeve!   

Nerd reference!!! 

[Drew Espinosa]

13 minutes ago, spike382 said:

Nerd reference!!! 

[Page Scrawler]

49 minutes ago, Drew Espinosa said:

Howdy bullies!   

Hey, Spunky Drewster! 

[spike382]

8 minutes ago, Drew Espinosa said:

[Headstall]

55 minutes ago, Drew Espinosa said:

That's no way to call yourself, Nynaeve!   

I don't have a braid to pull... but I do have something else.  

 

Thanks for calling me a Wisdom.  

Edited September 14, 2023 by Headstall

[dughlas]

So it's been an interesting day. I couldn't get in contact with endocrinologist overseeing my infusion. Their phone system either just looped or rang and rang without anyone answering. Even my patient liaison could get them. She eventually sent two emails. They called me back just before leaving for the day. I missed the call so need to call them back tomorrow. I did get in touch with the nephrologist and left a message to have a nurse call me back she did. When I explained that I was being treated with Tepezza infusion and was having issues with numerous side effects and I call them because my bp had spiked dramatically. She didn't know what Tepezza was, could I spell it so she could look it up. I did. I explained it took a couple of days until I understood what was happening because the first thing was a serious migraine.

"Oh you get migraines". "Yes, I have intractable migraine and have migraine most days". "Well, your migraine could be the problem. You need to call your doctor for treatment. How do you treat them?" "Well, because they're intactable and occur so frequently I rely on resting and compresses. I only medicate the most severe by taking an Aleve." "Oh! You can't do that. Aleve will raise your bp." Well my specialist at Thomas Jefferson and Dr Sommerman both have approved that course of action as the lesser of two evils. Since the doctors are in agreement and you're a nurse who really knows nothing about the my circumstances I will continue to follow their instructions. Since I only just became aware in the last day or two that my symptoms were related to the Tepezza and I didn't have functioning bp cuff I bought a new one yesterday." "Okay, tell me readings." I did, the three I had at that point. "You only have three. Well that's not enough." "As I explained earlier my bp readings to this point have been acceptable. I needed to buy a cuff because I didn't have one. I only been able to tak three readings. Two last evening and one this morning." "Well, I really think you need to consider further treatment for your migraine." "I have been dealing with migraine for more than 45 years. That is not my current issue. All my symptoms are related to the infusions." "Okay, I'll pass these notes on to the doctor's nurse and see if he has any instructions." "Thank you." Since she knows nothing about Tepezza and only enough about migraine to be dangerous she focused only on what she thought she knew and ignored what I told her. Interestingly, I had fasting blood drawn this morning for the nephrologist. Guess what the only really bad result was? My glucose and triglycerides are high. One of the most common side effects of Tepezza is increased blood sugar. They specifically diabetics to pay close attention to their blood sugar. Of the 13 most common side effects I have defintely experienced 6 and possibly 2 others. Since my hair is already slowly fading away it's difficult to tell if it disappearing faster. And I noticed that I don't hear some voices as well as before so there might be some hearing loss but that should be temporary. Of the 6 most serious I am dealing with 4. Those are the ones that got my attention this week.

The nephrologist's nurse also called back because he has some instructions for me. Sadly, I didn't get that message until they'd left for the day. Another call for the morning. My guess is he saw the glucose and wants to do something to correct it. Boy is he gonna be surprised when I say NO. I'm going to tell them that he needs to research Tepezza and it's potential side effects so that when I see him on October 3rd we can talk. I will do additional testing but more than that nothing until at least 60 days after the last infusion. 

Oh, Tepezza works on the muscles behind the eye. That's how it corrects the TED. Unfortunately, it's indiscriminate and messes with any other muscle it can. Hence my issues.

Edited September 14, 2023 by dughlas

[Page Scrawler]

7 minutes ago, dughlas said:

So it's been an interesting day.

[Headstall]

6 minutes ago, dughlas said:

So it's been an interesting day. I couldn't get in contact with endocrinologist overseeing my infusion. Their phone system either just looped or rang and rang without anyone answering. Even my patient liaison could get them. She eventually sent two emails. They called me back just before leaving for the day. I missed the call so need to call them back tomorrow. I did get in touch with the nephrologist and left a message to have a nurse call me back she did. When I explained that I was being treated with Tepezza infusion and was having issues with numerous side effects and I call them because my bp had spiked dramatically. She didn't know what Tepezza was, could I spell it so she could look it up. I did. I explained it took a couple of days until I understood what was happening because the first thing was a serious migraine.

"Oh you get migraines". "Yes, I have intractable migraine and have migraine most days". "Well, your migraine could be the problem. You need to call your doctor for treatment. How do you treat them?" "Well, because they're intactable and occur so frequently I rely on resting and compresses. I only medicate the most severe by taking an Aleve." "Oh! You can't do that. Aleve will raise your bp." Well my specialist at Thomas Jefferson and Dr Sommerman both have approved that course of action as the lesser of two evils. Since the doctors are in agreement and you're a nurse who really knows nothing about the my circumstances I will continue to follow their instructions. Since I only just became aware in the last day or two that my symptoms were related to the Tepezza and I didn't have functioning bp cuff I bought a new one yesterday." "Okay, tell me readings." I did, the three I had at that point. "You only have three. Well that's not enough." "As I explained earlier my bp readings to this point have been acceptable. I needed to buy a cuff because I didn't have one. I only been able to tak three readings. Two last evening and one this morning." "Well, I really think you need to consider further treatment for your migraine." "I have been dealing with migraine for more than 45 years. That is not my current issue. All my symptoms are related to the infusions." "Okay, I'll pass these notes on to the doctor's nurse and see if he has any instructions." "Thank you." Since she knows nothing about Tepezza and only enough about migraine to be dangerous she focused only on what she thought she knew and ignored what I told her. Interestingly, I had fasting blood drawn this morning for the nephrologist. Guess what the only really bad result was? My glucose and triglycerides are high. One of the most common side effects of Tepezza is increased blood sugar. They specifically diabetics to pay close attention to their blood sugar. Of the 13 most common side effects I have defintely experienced 6 and possibly 2 others. Since my hair is already slowly fading away it's difficult to tell if it disappearing faster. And I noticed that I don't hear some voices as well as before so there might be some hearing loss but that should be temporary. Of the 6 most serious I am dealing with 4. Those are the ones that got my attention this week.

The nephrologist's nurse also called back because he has some instructions for me. Sadly, I didn't get that message until they'd left for the day. Another call for the morning. My guess is he saw the glucose and wants to do something to correct it. Boy is he gonna be surprised when I say NO. I'm going to tell them that he needs to research Tepezza and it's potential side effects so that when I see him on October 3rd we can talk. I will do additional testing but more than that nothing until at least 60 days after the last infusion. 

Oh, Tepezza works on the muscles behind the eye. That's how it corrects the TED. Unfortunately, it's indiscriminate and messes with any other muscle it can. Hence my issues.

I have an idea of the frustration you must be feeling. It can get scary when things go wrong and no one is listening. Hang in there, dugh, and stick to your guns. You know yourself better than anyone else. I hope you get some help and answers tomorrow.  

[spike382]

1 hour ago, Headstall said:

I don't have a braid to pull... but I do have something else.  

 

Thanks for calling me a Wisdom.  

Double nerd reference!!!