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noah

duopa pump

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i just came back from the doctors and she thinks i would be a good canidate for the pump. I wanted to hod out for the one that doesnt require surgery

but that one is still in the study phase and will be years before it is available, and the doctor said that when it is approved by the FDA i can always switch 

i just cant wait any more. I feel like my life is controlled by the clock ,when is it time to take my pills, how is that going to relate to my food.

i am ready to seriously  consider it. those of you who have it could you please let me know how it has gone both pros and cons 

 

thanks in advance for your help 

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noah, I am very pleased with my Parkinson's experience on the Duopa gel. I, too, was tired of having oral carb/levo wear off every 2.5 hours. I had biphasic dyskinesia--jerky movements when the medication was at its peak and as it left my system--every dose. The pump can be set very specifically for maximum benefit and the least amount of dyskinesia throughout the day.

Please keep us posted as you go through the process.

Dianne  

 

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In was wondering how long it took you to get back to what ever your new normal was after being dx.

I am very interested in the pump but I have so many things on the calendar 

I have to get my batteries changed for my DBS which will have to be done before the end of the year. I am also getting a puppy . We have had to put down 2 dogs in the last few months which has been really hard for my husband they were like his children. He has done so much for me that i cant tell him no

Then y daughter is having our first grandchild in Feb.

Even though I want to have the surgery i am not sure about the timing.

Did it take you long until you felt like you had your PD grove back?

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Apologies, noah. I thought I sent this last week. It popped up just now when I went to answer your post from today. 
noah, a nurse from ABBVIE will come to your home and train you in the use of the pump. The PEG-j tube, once placed and healed, should require simple daily cleaning with soap and water. The procedure takes about 30 minutes each morning and 10-15 minutes at bedtime. The tube is flushed with tap water before you connect each day and when you disconnect each evening. All questions you have can be answered by a nurse assigned to you at ABBVIE.

You will be given the opportunity to talk by phone with a patient or caregiver who has experience with the Duopa system up to five times before and after you start Duopa.

Dianne 

 

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noah, I'm not sure I understand your question about adjusting to my new normal after my diagnosis. I was diagnosed in 2010. It took over three years to accept all the changes that resulted from my diagnosis. Some were easier to accept than others. My husband leaving me was the hardest.

You do have a lot on your calendar. The pump will be ready when you complete your list. One thing I've learned is not to try to do too much at once.

Dianne      

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The surgery required a one night stay in the hospital. Within a week the stoma had fully healed. Eight days after the tube was placed, my MDS and a nurse from ABBVIE spent most of a day adjusting the flow rate. Over the next few months, the settings had to be adjusted twice.; once because of dyskinesia and once for levodopa-induced dystonia.

Dianne   

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So it sounds like it took about 3 weeks for the healing ect

the fine tuning i imagine is done on a reg basis.

What kind of change did you notice with your pills 

were you able to get rid of the pills

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The biggest and most immediate change was no wearing off.  Duopa is continually delivered to the part of the small intestine that absorbs it. Within seconds it reaches your brain and you remain in an "on" state for up to 16 hours. I still have fluctuations in energy level and am still affected by stress. My pump is set for up to five extra doses per day; I rarely use them. I keep a bottle of carb/levo 25/100 tablets for use if I find myself awake in the middle of the night and it is not time to reconnect the pump. My sleep is generally good, so it is a rare occurrence.

Duopa must be refrigerated. If your electricity goes out for more than 12 hours, your Duopa would have to be replaced. You will want to check with your insurer to see if this would be covered.

Dianne  

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You will be given several options to choose from for wearing the pump. I initially had the cross-body bag. I now use the fanny pack bag. You can go to Amazon.com and search for Duopa carrying case to see all the options. Some are more suited to men; others are better for women. It was a fashion challenge for me at first. Fortunately, I have a friend who is handy with a needle and thread. She made some small alterations to clothing I already owned so there was no extra expense there.

Dianne      

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Drummergirl, I am so happy for you! Due to a miscommunication with the pharmacy I chose and my caregiver not understanding that the Duopa shipment doesn't arrive without me ordering it, I had to go without the pump yesterday morning. I took a dissolvable carb/levo 25/100 when I woke up and within minutes felt the old familiar nausea. I fell asleep and missed the second dose by 45 minutes. I was sore everywhere. My tremor was as bad as it used to be when I was on oral medication. I took a second pill and had to wait for it to get through my GI tract. Fortunately, my Duopa arrived and I was hooked up and good for the rest of the day by 8:30. I really love not ever being off during waking hours.

Dianne

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I have an appointment next week with the doctor who runs the pump program.

I will be interested in how you make out drummergirl

What day are you having it done, i will add you to my prayers

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I go next Tuesday for the tube placement, but have to wait until the following week for the pump titration. I will let you know how it all goes!!

Thank you, 

 

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I have had the pump since shortly after it came out. I am very frustrated with the PEG -J tube. I am not kidding in that the 3 yrs. since the pump came out I have had to have the PEG-J tube changed out over 10 times! Again I am not kidding! The medication is great but the tube is a serious issue in my opinion.  It has seperated at the connectors, gotten blocked by being up against my intestinal wall,  the tubing has gotten curled up in my stomach, amongst other reasons. I love the medication and I am not ready to give up on it and go back to the pills. My constant dose is 4.5 so that is not quite a whole pill every hour. I would love to hear from anyone else who has had these kind of issues. 

Edited by JimandKym
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Oh BUMMER and SORRY to hear this Jim...

WELL, my experience SO FAR : I was told when I met with Gastro, no need for any pain med, it's feels like a "bee sting, then a little soreness for a few days at the site...I inquired about tube sizes. One size fits all is basically what he said.  ie, I'm barely 100 lbs. So I thought sounds easy peasy.....WRONG!! Right when I woke from the endoscopy I was having discomfort, which I knew would bring on tremors and I was nervous about receiving my PD meds on time since I was scheduled to stay the night. It was an afternoon procedure, (MISTAKE #1) and they planned to Xray the following am just to be sure of placement. Neuro's schedule didn't jive with the Gastro, so pump titration is this coming week.  We live 2 hours from this hospital.

As soon as they found a room for me my leg tremors began, which turns into full body VIOLENT tremors since it;s my foundation. I go from no tremor to violent tremor in seconds. Still no pain med...nurse called doc again, oh they could do a Tylenol enema....while she was gone I dug into my overnight bag and snuck my own PD meds, which I knew would take forever to work, if at all since my gut had air pumped in it and was now spasming. When I'm in the off I have to walk or march my feet, I physically can't sit or even stand still, it's so violent I have to move, no freezing for me. Nurse asked for oral pain med or IV, no response from docs, this went on for 3 1/2 hours. I was exhausted, incredible pain and still no pain med. Nurses had never seen a PD patient have violent tremors like mine and they were scared. They called neuro on call who finally came and he too was shocked at my OFF. which my neuro says is "your in a seizure state but don't pass out."... I let him have it about not receiving pd meds on time and I would be taking my own or going home. He said pharmacy says NO, and he promised that the nurses would give them timely. RIGHT.. He ended up giving me Ativan in my IV,  which I would normally turn down, but not at this point. it toned down the pain but I still had spasms.  Oh, I was only allowed to sip water when taking meds until the Xray the next am. I dozed on/off, at 3:30am a repeat of the above for 1.5 hours. At 8 I asked when I was to have the Xray, nurses had no clue. A young team of neuro's came by and said "we heard it was a rough night...I replied, "it didnt have to be a rough night if Id been allowed my meds on time..it's inhumane to go thru that and they should be ashamed. A gastro intern finally came by at 1;30pm when I threat-end to leave. He did a 3 minute check of the tube and said you can go. My husband asked about the xray I was suppose to have, oh, you don't need it..my husband was livid, so why did she stay overnight suffering here and not allowed food for 32 hours...came home in pain and exhausted.

When home I had a cup of soup and within 1/2 hour I was doubled over in pain on my knees this went on for another hour, hubby called ambulance transported to local Dartmouth hospital, they kept me for the night doing  xray and CT scan due to the pain and tenderness. they were thinking it was leaking and my white count was up. They tried 3 different pain meds to stop the pain that they claim was due to non pain the day before and the spasming, finally Toredol worked. I've been home for two days and each day gets better. Im still having pain around the opening after I eat and can feel some hardness. Due to the snowstorm, ABBVIE nurse cant come until the end of the week. 

I'm dreading the titration which has been pushed due to severe weather from tomorrow, Monday to Tuesday-Thu if needed. I will let you know how the next phase goes.....

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I am sorry to hear about your experience . You said that you would recommend a morning appointment

Where do they do the procedure is it done in an OR 

How long did it take

i have decided to go ahead with it.(i have to do something my quality of life sucks)

I am going be a grandma for the first time in February   so i have to do something. 

 I have emailed my doctor and told her all about you trouble

I had a similar experience when i had my dBS surgery. I am definatly going to bring my meds with me whether they like it not(i just wont tell them)

Keep us posted and I will do the same

 

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Noah, the  Peg J placement procedure is done in endoscopy. Titration is put off until next week or later do to the stoma discomfort. 

The disk that is placed just under the skin isn't sitting flat, it pinches and causing drainage. No one told me about so many possible problems and how long to recover. I feel like I've gone backwards due to so much physical trauma.

How far do you have to travel for the DUOPA? I travel 2 hours. The hospital near me now does it, so I may have to make the change.

 

Good luck....🤞

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I emailed my doctor and told her about your experience and she said that they havent had problems like that. most of the time things go smoothly 

i expressed concern about getting my meds on time(that was a  problem when i had my dbs surgery.  She assured me that it wont be an issue(she said that she will keep an eye out for me while i am in the hospital.)

I am feeling a  little bit better about it.

How are you doing?I travel 1.5 hrs but it is worth it.

I am waiting to see if insurance covers it.

keep me posted about how you are doing

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