CoTT 2 House of Cards

[Drew Espinosa]

3 hours ago, Headstall said:

but I do have something else.

Hey, stop pulling on my  it's too big for you to handle.  

3 hours ago, Page Scrawler said:

Hey, Spunky Drewster! 

Hey, Pagey!  

2 hours ago, spike382 said:

Double nerd reference!!! 

Stop bullying Handsome! 😭

[spike382]

31 minutes ago, Drew Espinosa said:

Stop bullying Handsome! 😭

I'm pretty sure if I was actually bullying Gary, he could take care of me.  

Also, how would I know I was a nerd reference unless I actually was aware of the Wheel of Time goofball? 

[Drew Espinosa]

49 minutes ago, spike382 said:

Also, how would I know I was a nerd reference unless I actually was aware of the Wheel of Time goofball? 

[Dan South]

4 hours 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.

No one can advocate for your health and care better than you can. Stay strong. Sending you good vibes and strength ☮️

[spike382]

2 minutes ago, Drew Espinosa said:

Love you too Drewbear. 

[raven1]

6 hours ago, dughlas said:

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.

Hi Dugh!  Hope the doctors get back to you with something that will help.  I appreciate the time you took to tell us more about what is happening with your health.  I didn't know why you were having infusions, or what the treatment was that is causing you so many difficult side effects.  I admit that I went down the rabbit hole to find out more.  I was happy to know that the treatment side effects are temporary usually, and that the successful treatment means that you won't have to deal with TED in the future.  Wishing you the best.

BTW, I hate "professionals" like that nurse who don't know how to admit they don't know the solution and throw out idiotic suggestions that can adversely affect a person's health.  She should have listened carefully and recorded what you said to report to the doctor, not diagnose and suggest treatment.  

[raven1]

Hi Everyone! Good Morning, Afternoon, Evening!

 

[dughlas]

Thanks y'all for your support and encouragement. I am a bit spoiled. Mum is a retired nurse and had things gone as she wished she would have become a PA. Sadly, my dad nixed that. Because of Mum, she was well known and respected in the local medical community, I grew up under the care of excellent doctors and have been fortunate to have for the most continued that trend. I respect the training and education but doctors do not intimidate me, I will get the answers I need. Blessed be y'all. 

[Page Scrawler]

4 hours ago, raven1 said:

Hi Everyone! Good Morning, Afternoon, Evening!

Hey, Terry! 

[Albert1434]

Aloha All

[Albert1434]

[raven1]

1 hour ago, Page Scrawler said:

Hey, Terry! 

Hi Page!  I wish you, Morgan and Max have a great weekend ahead!   I always enjoy hearing your updates on family life.  

[raven1]

36 minutes ago, Albert1434 said:

Hi Albert!   Please let Steve know I said 'Hello!' to him also.  Hope you two have a great weekend.

[raven1]

Hi Clo!   Hope you have fun this weekend.  How's school going for you?  Be sure to tease Drew and Spike for me!

[raven1]

Hey All!   Party night with Aod and friends.  I'll check in with you all in about 18 hours from now.  (Estimated time to party, sleep and have two or three coffees to revive me.)

[Headstall]

Hey, all!  

[Albert1434]

[Albert1434]

[dughlas]

I actually made physical visit to both the endocrinologist and the nephrologist. Both visits went well. The nurse that oversees Tepezza patients took time for a real medical evaluation complete with a lis of questions from the doc. He was out of the office. She told me it be prepared for to discontinue the treatment based on the risks. I actually hope he does. I am frightened that the next treatment could put me in the hospital. Waiting to hear.

[Headstall]

3 minutes ago, dughlas said:

I actually made physical visit to both the endocrinologist and the nephrologist. Both visits went well. The nurse that oversees Tepezza patients took time for a real medical evaluation complete with a lis of questions from the doc. He was out of the office. She told me it be prepared for to discontinue the treatment based on the risks. I actually hope he does. I am frightened that the next treatment could put me in the hospital. Waiting to hear.

I'm kind of hoping the same thing. I'm no doctor, but it seems rather dangerous to keep having them.    

[dughlas]

4 hours ago, Albert1434 said:

I love the sentiment Albert and hope all the best for you Steve.

[dughlas]

1 hour ago, Headstall said:

I'm kind of hoping the same thing. I'm no doctor, but it seems rather dangerous to keep having them.    

I have spoken with Mum, Sadie, my patient liaison at Horizon and the nurse at the endocrinologist.  Mum and Sadie said at the very least I could cancel the next infusion until we have a better handle on things. The nurse at the doctor's said he had not made a final decision. He was going to talk with my nephrologist but she thought he was seriously leaning toward stopping. I told I had decided I wanted to discontinue because I have a history of responding weirdly to medications. Sometimes the opposite of what is expected. She was going to give him an additional note with my decision. I think she thought it the right move but couldn't come right out and say so. Now I just need his final concurrence.  Oh , and another nap. I'm exhausted.

Edited September 15, 2023 by dughlas

[Headstall]

37 minutes ago, dughlas said:

I have spoken with Mum, Sadie, my patient liaison at Horizon and the nurse at the endocrinologist.  Mum and Sadie said at the very least I could cancel the next infusion until we have a better handle on things. The nurse at the doctor's said he had not made a final decision. He was going to talk with my nephrologist but she thought he was seriously leaning toward stopping. I told I had decided I wanted to discontinue because I have a history of responding weirdly to medications. Sometimes the opposite of what is expected. She was going to give him an additional note with my decision. I think she thought it the right move but couldn't come right out and say so. Now I just need his final concurrence.  Oh , and another nap. I'm exhausted.

Sounds like the safe choice to me, bro.  

[Headstall]

Chill in the air today, though it is 19c. Winter is coming...  

[clochette]

4 hours ago, raven1 said:

Hi Clo!   Hope you have fun this weekend.  How's school going for you?  Be sure to tease Drew and Spike for me!

Hey T

I'm doing great. Exhausted but it's the good kind. I absolutely love my classes! Already a lot of work in French/literature but it's mostly reading of the official programs, end of years expectations... so I decided to not read the over 500 pages in one go but to go over them with time. So far I had French, mathematics, visual arts, music, geography, English and something about the "values of the republic". 

Nothing particular planned for this weekend. I need to go to great-aunt's to do my laundry, buy a drying stand and color pens. Oh and I'll go check this second hand bookstore that sells books for 2 or 4€ to see if I can find the books I have to read for the next 2 years

I'm wishing you great fun on your night out