Latest Hospice Visit

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kylisa

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Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
The hospice nurse came today. After hearing what has been going on with Mom, she called the ALS doctor and talked to him. He says that he has experienced quite a few patients complaining about the feeling hot issue. He says that it is nerve confusion and that Neurontin tends to be the treatment of choice. Hope that it takes care of this issue because it has become an everyday thing. They want her to have catherer but, Mom is still totally refusing that...lol

She is now requesting to be propped on 2 pillows but, she doesn't have major signs of hypercania. I suspect that her breathing muscles are beginning to weaken to some degree. She has been totally against bipap so, we will just have to deal with what comes.

Hope everyone is having a decent day today.
 
I really hope your mom reconsiders getting a bipap and a catheter because they make life so much easier. A lot of people don't want them at first but then decide to get them and later wonder why they hesitated.

I hope you have a good day too!
 
That's very interesting. I happened to be on the phone with our Hospice nurse this morning about the same thing. My wife has been having occasional issues, with something like hot flashes. Our hospice DR thought this may be hormonal, but wasn't sure. I'll share this info with him.
Your Mom and my wife sound a lot alike. She never wanted the BiPAP, but we got one anyway. It sat on a shelf for months, until she started getting bad headaches from CO2 build up, which pain killers weren't touching. She used it a couple of times and the headaches went away. Now she uses it a couple of times a day, without me bugging her to do so. It's a great tool to have around.
The catherer is our next challenge.
Have a good day and good luck.
By the way, where is Stanford, we used to live in London, KY?
Harry
 
Cather and Bi-pap experience

The first time I used the Bi-pap I got a full nights sleep and woke up refreshed. It helped me greatly. I now have Oxygen added to it at night because my O2 stats are in the 80's. One thing I had to change to get used to it was to go from a full face mask to nose pillows. They work so much better for me.
I also have been on the internal Cather for 3 months now and the difference at night is amazing. Before I was having to wake up four or five times to urinate. Now I just sleep right through, as long as everything else is working OK. Only negative comment I have is the possible infections in the bladder from the cath.
 
One of the things I absolutely love about this forum is the wealth of information that can be obtained through testimonials regarding the use of technologies. For instance, in this thread alone you can see how folk have benefited from the use of bipap and catheter and the marked improvement in the quality of life that has been gained through their use. (Not to mention all of you that are using feeding tubes and vents.)

Thank you for sharing your decisions and experiences with these tremendous aids. You've helped calm a lot of fears and have encouraged many!

Zaphoon
 
Harry77 said:
That's very interesting. I happened to be on the phone with our Hospice nurse this morning about the same thing. My wife has been having occasional issues, with something like hot flashes. Our hospice DR thought this may be hormonal, but wasn't sure. I'll share this info with him.
Your Mom and my wife sound a lot alike. She never wanted the BiPAP, but we got one anyway. It sat on a shelf for months, until she started getting bad headaches from CO2 build up, which pain killers weren't touching. She used it a couple of times and the headaches went away. Now she uses it a couple of times a day, without me bugging her to do so. It's a great tool to have around.
The catherer is our next challenge.
Have a good day and good luck.
By the way, where is Stanford, we used to live in London, KY?
Harry
Click to expand...


Stanford is about 30 miles north of Somerset if you travel US Hwy 27.
 
MtPockets. you mentioned your O2 stats are in the 80's. What is normal? My mother is supposed to be getting a BiPAP.
 
Mid to upper 90's is normal for most people.

AL.
 
Catheter

MtPockets said:
The first time I used the Bi-pap I got a full nights sleep and woke up refreshed. It helped me greatly. I now have Oxygen added to it at night because my O2 stats are in the 80's. One thing I had to change to get used to it was to go from a full face mask to nose pillows. They work so much better for me.
I also have been on the internal Cather for 3 months now and the difference at night is amazing. Before I was having to wake up four or five times to urinate. Now I just sleep right through, as long as everything else is working OK. Only negative comment I have is the possible infections in the bladder from the cath.
Click to expand...

I, too, have a bipap and catheter. My Pulmonologist is in the process of adding oxygen with the bipap, due to low 80's for O2 sat, (normal is 92-100%).
But with the catheter, I, too, agree that nightime is so much better, not having to get up in the middle of the night to go wee...LOL.
But my Urologist told me people with catheters will always be prone to UTI's, (Urinary Tract Infections). Since I have a neurogenic bladder, (a bladder that cannot do anything due to nerves not working), I was getting UTI's before the catheter anyways as it never emptied completely. Since I also have no feeling at all in that area, I also cannot tell the usual signs of a UTI. But now I can--when I develop severe, painful bladder spasms, it then means I have a bad UTI. Good news--the doctor then knows now that I have a bad UTI, and treats it with an antibiotic. Bad news--it hurts like hell...
Also--learning to live with the catheter--while in bed, when the body is relaxed, it works well and everything is no problem. But, when up during the day, it can tend to leak around the catheter, so it can look like you pee'd your pants. So, in the morning, I take a 4 x 4 gauze, put some neosporin at the tip as I also am prone to infections from the leakage at the tip, and tape it put. This seems to help the problems...
KEDASO
 
Bladder Spasms? What might help!

Before all this ALS stuff my O2 ran around 97 to 98.

The nurse just came and changed out my Cather because it had clogged up. One of the things I have noticed that helps keep the bladder spasms down is when they fill the balloon on the inside, of the Cather, they only use 20 cc of fluid to fill it. The first nurse had used 35 cc and that caused all kinds of spasms. I know there are different capacities of Cather's on the market. The ones I use are marked 30 cc balloon capacity, yet they seem to work better for me with only 20 cc of fluid filling the balloon.
Just a thought you might want to ask your Doctor about to help possibly with the bladder spasms.
 
Silicone catheter

Hi again,
I forgot to mention, that my Urologist now insists that I get SILICONE catheters,
which are new on the market. Apparently, bacteria has a hard time sticking to
the catheter, if it is made of silicone, and cuts down a little on the UTI's.
They are a clear white-ish tube.
KEDASO
(Ken)
 
Silvertouch™ catheters Suppose to help prevent UTI's

I also just found out about a silver coated Cather that is suppose to help prevent UTI's. Here is a quote about it,
"Ionic silver is effective against gram-positive and gram-negative bacteria, as well as fungi. Ionic silver hydrophilic catheter coatings can be very effective against the most common and serious UTI pathogens, including, E. coli, Candida albicians, Staph aureus, Pseudomonas, Klebsiella, MRSA, CRE and others. Silvertouch™ catheters incorporate the power of silver through a patented process that binds silver ions to the catheter's lubricious coating."
If you are interested in more information you can go to:
https://www.medline.com/b2b_mercury/b2b/load_catalog.do
And do a search for Silvertouch™ Catheters.
I am currently in the process of ordering some through my Medical supplier to try them.
 
I can't explain how informative this forum/thread has been. I am a brand new member (today is my first day) and I have learned so much from you all. My fiance's father was diagnosed with ALS July 2008. He's had the Bulbar symptoms since late 2007. He's having a very hard time accepting his illness and refuses any kind of treatment or assistance. I decided to join this forum so maybe I can gain some knowledge and try to understand his illness better.
Two weeks ago he was admitted into the hospital (he hadnt eaten in 4 days) to get re-hydrated. After getting some information from the doctors and talking to my fiance's family, his father finally agreed to a feeding tube. He has gained 6 pounds and looks so much better. Even though his ALS is moving very quickly I want to see my finace and his family enjoy the time they have left together.
When I go home tonight I will talk to my fiance about the Bi-pap machine and tell him how useful it's been to you all (his father refues to utilize any machine or medicine).
Once again THANK YOU for letting the ones who aren't diagnosed into a world so confusing. I feel so much better ready your thoughts and advice!
May God Bless you all and THANKS from the bottom of my heart!
 
Thank you MtPockets for the link. Truly appreciate it :)
 
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