PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

[mytmouz]

Had my back door on my home replaced due to being old and crumbly. I had a wider door installed while they were at it. Really interesting since it took most of the day, and it was in the upper thirties...

 

[Tkthiede]

I am doing OK. I have recovered from the lower respiratory infection (probably flu) I had the first week of January. That was scary! I had the flu shot and I really think that helped.

I am starting to adapt to the non invasive ventilator and have tried using it for part of two nights now. It is different, but overall it really helps.

My younger brother died unexpectedly of a pulmonary embolism two weeks ago. We went to Dayton, Ohio last week for the first service and will go to San Antonio, Texas for the funeral next week. He was a special guy and it is very hard to lose him.

We flew with my wheelchair for the first time. My Permobil F5 is still in the shop for the damage it received when stolen over Thanksgiving. I took my backup Permobil C500 Corpus 3G wheelchair to Ohio. It was damaged on the return flight and will not be repaired in time for the flight to Texas for the funeral. I don't want to fly with my primary wheelchair (Permobil C500s VS), but may have to.

The airline has been great about working to fix the wheelchair so far, but it looks like it will be out of commission for a month or more.

With all that is going on, I have not yet had a chance to go skiing yet this season. I am looking forward to skiing sometime in mid February.

Steve

So sorry to hear about your brother, Steve. Sending a prayer for good memories to bring you peace.

 

[blitzc]

Steve, I'm sorry about the passing of your brother. I can't imagine the loss of a sibling. My prayers are being sent your way.

Dee Dee-I agree that at a certain point some medications may not be worth the effort like Radicava which requires effort, time, and assistance. But having said that, it can not be causing a loss of respiratory function. This loss is due to the depletion of muscle function of your core and diaphragm. If your and your neurologist research the drug and how it "works" to slow progression, it would be easier to make an informed decision about whether to discontinue or not. As stated by Kim, you have the right to make that decision. And as Karen reminds us all, no one knows for certain.

Kim, sorry about the cold temps you are experiencing. Here in Ohio we had identical mid-morning temps as Tampa yesterday morning! ❄🌨

Happy Thursday to all! It's finally feeling like January here after having an unusually warm December and beginning of the year. My husband, who is a major retail store manager, is finally getting a week vacation after the holiday shopping season starting tomorrow. He surprised me with a trip to Jamaica for our 31st anniversary we celebrated December 30th. So off we go. Traveling is not easy on either of us, however we are taking every opportunity before it is absolutely impossible. We planned to travel in our retirement; it just is happening all in one year.

 

[KimT]

Good for you, Cathy. I'm glad you're getting to travel to warm places.

 

[Tkthiede]

Happy Wednesday! I saw the pulmonologist last Friday. My SVC has dropped 11% since my last PFT’s. It’s at 62 now. I’m not really sure what all of that means. I’m so grateful someone mentioned having a PEG tube placed before lung function decreases too far. My pulmonologist suggested I have it done within next 3-4 months. I think I’ll see the surgeon end of February or first part of March. I don’t want to risk going further than that.
I think I’m doing just fine though! Glad for every day I’m given.

 

[Nikki J]

Sorry about the breathing. my clinic recommends strongly an interventional radiologist put in a feeding tube ( rig) and not a GI/ surgeon. It is considered safer when breathing is compromised

 

[Tkthiede]

I’ve had gastric bypass so they have to go into the old stomach. So it was recommended to have the gastric bypass surgeon do it. But I’m going to ask if interventional radiology would be appropriate. I’m terrified that if they intubate for surgery, I won’t be able to wean off the vent. Thanks so much for the idea.

 

[Nikki J]

Oh that makes a big difference. Yes ask but don’t be disappointed if you need surgery. If you do require intubation make sure your case is reviewed with pulmo, anestheia and neuro all talking before My sister was far more respiratory compromised and needed surgery with intubation and with everyone working together was extubated very quickly

 

[mytmouz]

Spent a frustrating day trying to get my Riluzole coverage. I think it has worked, and have been on it since August of last year. Called to have my meds filled, and it is no longer covered by insurance. I called OptumRX, as they are the insurance companies third party provider. (so they can dodge responsibility). After spending close to an hour each with 3 people on the phone, as I was transferred to different divisions, I was basically given the finger.

As of January , this was classified as a specialty drug, and has to be ordered through their online pharmacy. I didnt agree to, or sign up for this, and cannot opt out. Well, I run out Saturday, and they will not be able to fill it before I run out, as they can't ship until the paperwork is processed.

The best solution they has was for me to pay out of pocket for this refill, and I would be in the rotation from that point. Of course, that is an out of network purchase, and I would not be reimbursed.

Now mind you, I never recieved a call or any mailed item about this. But it is basically my fault somehow that they they caused this, in the name of convenience. And if they quoted me correctly, their is no cost savings for me, so the money they save in bulk purchasing goes to the bottom line...

I am so glad I the beginning I opted to stay on the line and take the survey...

 

[Doglady]

Oh, mytmouz- what a run around you got. I hope it’s also not a burdensome expense.

Tkthiede- good luck and best wishes for a smooth procedure which helps you maintain a good nutrition level!

I’m getting tested for my second UTI in the past 2 months- since getting the suprapubic catheter. My urine looks like pink leomonade!

 

[KimT]

Happy Friday. I'm ready for Florida's weather to come back.

 

[mytmouz]

To follow up on my earlier post about my drug coverage saga, the online pharmacy had my prescription transferred from my local pharmacy, so I can't fill it there now. They still couldn't get it to me until next week.

The local price is 78.41. I dont understand the supposed cost savings with the online pharmacy, as their cost is 551.11...

I am trying to get my prescription transferred back.
And I selected the option to stay on the line and take the survey at the beginning of the call. They are gluttons for punishment...

 

[Dee Dee 0617]

It's Thursday for the next 20min or so. Not sure what happened to yesterday. I received a call from my ALS team, I now have an appointment for a conversation about a feeding tube. After I corrected her when she said she would send me a packet regarding the tracheotomy, I said "come again? " She repeated herself, and I explained no not yet. Mytmouz Sorry you got the run around.

 

[mytmouz]

Recovery wednesday here. My CALS has pneumonia and I have a bacterial infection of my sinuses. Since I dont have much exhale function, it takes forever it seems to actually finish a cough...

 

[KimT]

Wednesday again. I got the all clear from my eye doctor to go back in the pool. The heater is not on outside and I can't tolerate the chemical smell of the indoor pool.....so.....hoping for a warm March.

My grip strength is not great but no complaints.