Going to be infusing 3 drugs for m abscessus every 8 hours at home with a PICC line. Any tips for dealing with drug side effects PLUS sleep deprivation?
I did infusions for Pseudomonas, no side real side effects from the medications. Sleep was an issue, but I did adjust. However, I only did it for 3 weeks. I settled on 6 AM, 2 PM and 10 PM (plus/minus 1 hour). The infusions took 30 minutes. I usually fell asleep before 10 PM but set my alarm to wake up. That schedule let me get about 7 hours per night. Not sure if this helps. Best of Luck to you!
Thanks for the details. It really helps to hear from someone who has done it. I expect to be setting a lot of alarms. Thank goodness for cellphones. Just have to remember to keep it charged and with me.
Additionally, the provider that placed the PICC line gave me a package of 3 hand/arm gloves that went almost to the shoulder. My hubby would tighten the strap to hold it in place and seal the cover. I was then able to carefully take showers. I only used one of the gloves for the 3 weeks.
The provider pharmacy also provided supplies. One thing they did not supply was the caps that fit on the end of the PICC line. The cap keeps it protected until you remove it to take your medication. I had to ask for them and was told if the doctor didn't specifically order they don't provide. So I got the doctor to order. I highly suggest you make sure you get these to protect germs from getting in the end of the PICC line.
When the nurse comes to train you make sure you have the extension piece for the PICC line so you can self-medicate, otherwise you can't hook it up without help.
I did infusions for Pseudomonas, no side real side effects from the medications. Sleep was an issue, but I did adjust. However, I only did it for 3 weeks. I settled on 6 AM, 2 PM and 10 PM (plus/minus 1 hour). The infusions took 30 minutes. I usually fell asleep before 10 PM but set my alarm to wake up. That schedule let me get about 7 hours per night. Not sure if this helps. Best of Luck to you!
What did you infuse for 3 weeks? That seems like a long time but you say you only did it for 3 weeks. Was longer recommended? Does medicare cover if you do infusions at home?
All very interesting. The chances are I will have to go on IV Amikacin for Abscessus. I gather going to work is out of the question? Has your hearing been affected? Did you have your initial treatment in hospital? Wishing you all the best. So much information on here.
Additionally, the provider that placed the PICC line gave me a package of 3 hand/arm gloves that went almost to the shoulder. My hubby would tighten the strap to hold it in place and seal the cover. I was then able to carefully take showers. I only used one of the gloves for the 3 weeks.
The provider pharmacy also provided supplies. One thing they did not supply was the caps that fit on the end of the PICC line. The cap keeps it protected until you remove it to take your medication. I had to ask for them and was told if the doctor didn't specifically order they don't provide. So I got the doctor to order. I highly suggest you make sure you get these to protect germs from getting in the end of the PICC line.
When the nurse comes to train you make sure you have the extension piece for the PICC line so you can self-medicate, otherwise you can't hook it up without help.
Such a lot of great info. Thank you so much. I have a couple of shower arm covers from when i broke my wrist. I will ask the nurse just to be sure, but think they will work. I will also be sure she knows i need to be able to infuse myself.
I hope your appointment goes well! It was very easy getting the PICC line and I was happy it was in my bicep area and therefore not in the way of sleeping etc. So, interestingly, I was told that since I am not homebound, insurance wouldn't pay for at home infusions... so I had to go to an infusion lab every morning for 21 days. Once there it took about 10 minutes for them to switch out the bag on my pump. Plus they took blood at the beginning of each week to make sure kidneys and liver were handing the Cefepime ok. I loved my arm cover! It was super worth it to take showers for 3 weeks. (I'm not allowed to post the link to Amazon)
Also, I got an IV/chemo microfleece jacket that gave them access to my IV without worrying about taking off my sweater, etc. That was from Etsy. I could say more about the experience... like how my new pulmonologist said the IV was probably unnecessary to treat the pseudomonas, but I felt good while on it, and it did get rid of my cough for a few weeks. I hope this helps you in some way!
What did you infuse for 3 weeks? That seems like a long time but you say you only did it for 3 weeks. Was longer recommended? Does medicare cover if you do infusions at home?
I infused Ceftazidime for 3 weeks, which was a custom compound by a company who shipped the medications and supplies. Three weeks was the full treatment.
I am on regular Medicare, Supplement and Part D for prescriptions. The compound was covered by Part D with hefty copays. I had to pay out of pocket for the supplies and the nurse who trained me to do the infusion. The weekly nurse visits are to be covered by Medicare, I have not received any invoices from the Nurse vendor and have not received my EOB from Medicare yet, as this happened in March. Hopefully the nurse visits will be covered as I was told .
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I did infusions for Pseudomonas, no side real side effects from the medications. Sleep was an issue, but I did adjust. However, I only did it for 3 weeks. I settled on 6 AM, 2 PM and 10 PM (plus/minus 1 hour). The infusions took 30 minutes. I usually fell asleep before 10 PM but set my alarm to wake up. That schedule let me get about 7 hours per night. Not sure if this helps. Best of Luck to you!
-
Like -
Helpful -
Hug
1 ReactionThanks for the details. It really helps to hear from someone who has done it. I expect to be setting a lot of alarms. Thank goodness for cellphones. Just have to remember to keep it charged and with me.
Additionally, the provider that placed the PICC line gave me a package of 3 hand/arm gloves that went almost to the shoulder. My hubby would tighten the strap to hold it in place and seal the cover. I was then able to carefully take showers. I only used one of the gloves for the 3 weeks.
The provider pharmacy also provided supplies. One thing they did not supply was the caps that fit on the end of the PICC line. The cap keeps it protected until you remove it to take your medication. I had to ask for them and was told if the doctor didn't specifically order they don't provide. So I got the doctor to order. I highly suggest you make sure you get these to protect germs from getting in the end of the PICC line.
When the nurse comes to train you make sure you have the extension piece for the PICC line so you can self-medicate, otherwise you can't hook it up without help.
-
Like -
Helpful -
Hug
1 ReactionWhat did you infuse for 3 weeks? That seems like a long time but you say you only did it for 3 weeks. Was longer recommended? Does medicare cover if you do infusions at home?
All very interesting. The chances are I will have to go on IV Amikacin for Abscessus. I gather going to work is out of the question? Has your hearing been affected? Did you have your initial treatment in hospital? Wishing you all the best. So much information on here.
-
Like -
Helpful -
Hug
1 ReactionSuch a lot of great info. Thank you so much. I have a couple of shower arm covers from when i broke my wrist. I will ask the nurse just to be sure, but think they will work. I will also be sure she knows i need to be able to infuse myself.
BTW i have an appointment with the ID doc tomorrow. I think she is going to tell me which drugs and what to expect next.
Good luck hope your appointment goes well.
I hope your appointment goes well! It was very easy getting the PICC line and I was happy it was in my bicep area and therefore not in the way of sleeping etc. So, interestingly, I was told that since I am not homebound, insurance wouldn't pay for at home infusions... so I had to go to an infusion lab every morning for 21 days. Once there it took about 10 minutes for them to switch out the bag on my pump. Plus they took blood at the beginning of each week to make sure kidneys and liver were handing the Cefepime ok. I loved my arm cover! It was super worth it to take showers for 3 weeks. (I'm not allowed to post the link to Amazon)
Also, I got an IV/chemo microfleece jacket that gave them access to my IV without worrying about taking off my sweater, etc. That was from Etsy. I could say more about the experience... like how my new pulmonologist said the IV was probably unnecessary to treat the pseudomonas, but I felt good while on it, and it did get rid of my cough for a few weeks. I hope this helps you in some way!
I infused Ceftazidime for 3 weeks, which was a custom compound by a company who shipped the medications and supplies. Three weeks was the full treatment.
I am on regular Medicare, Supplement and Part D for prescriptions. The compound was covered by Part D with hefty copays. I had to pay out of pocket for the supplies and the nurse who trained me to do the infusion. The weekly nurse visits are to be covered by Medicare, I have not received any invoices from the Nurse vendor and have not received my EOB from Medicare yet, as this happened in March. Hopefully the nurse visits will be covered as I was told .