May 13, 2021 at 12:45 pm #30094
I have been meaning to ask to see if any of our members have experience using the implanted pumps for IV PH treatments. I know several PHriends who has, and it has been satisfied for years. My Accredo nurse mentioned it to me after some issues with my new PH med, Adempas, and other health issues.
I talked to my PH team yesterday, and we are not sure just yet on the next plan of action. But he wanted to give me more time to think about things and see what I would like to do, too. This is what I am now reading to see if I have other questions.
The scary part is he has no PH patients with the implanted device, but many on IV meds.
I also recently read that a new one was coming out, so who knows?
If you or your loved one has experience with the implanted pump, how did it go? What are some pros and cons that you can share with us?
May 13, 2021 at 2:13 pm #30095Jill UpshawParticipant
I have not dealt with that yet.
May 14, 2021 at 3:29 pm #30129
Thanks, @upshtcx. I hope that you do not need to deal with it.
@colleensteele, so many issues, they are unsure if the Adempas is causing additional stress on my kidneys. My last hospitalization was related to the issues, most likely.
My PH team mentioned lowering the dose, but at this rate, if my kidneys are being attacked, it is a quality of life issue. I also have had uncontrollable nausea and vomiting at times, unable to hold down my meds.
I want to add the massive nose bleeds that have now happened 4 times since starting Adempas. (edited)
Thanks for your support. I will keep y’all posted once I know our plan. My PH team and I are taking a little longer, but we will have a plan within the next few weeks.
The hospital has PH patients with implanted pumps; my PH doc was not here when they did the training. He prefers the usual IV meds. Whatever we decide is a huge decision, and I realize that all PH treatments come with issues.
- This reply was modified 1 month, 1 week ago by Jen Cueva. Reason: addition of SX
May 13, 2021 at 2:20 pm #30096Colleen SteeleKeymaster
@jenc I hate that you have these tough decisions to make. What is going on with your Adempas? Has your doctor agreed to have you switch to something else or is he still talking about increasing the dose?
The implanted pumps so great in theory but like all PH meds, there is probably some issues that come with the treatment. It’s a shame that you would be the first at your clinic if you decide to go with it. Is there another hospital with implant experience maybe close enough for you to switch to?
May 13, 2021 at 4:20 pm #30112Leslie CampbellParticipant
Hi Jen, I haven’t heard about an implant, but I have been on Adempas and the side effects have been horrible. It has been torturous taking it, my whole body wanting to reject it. I have started Tyvaso inhalant and was just told today I can STOP the Adempas.
Is Adempas the med that would be the implant or something to replace it? Have you had experience with the med that It might be?
I’m also on Opsumit, no problems, and Esbriet, unpleasant side effects, but no alternative there.
I’ve been wondering how others deal with a serious aversion to taking their meds. It is very hard for me to stick to a schedule when I dread the next dose.
How do you cope with horrendous side effects in general. Is this the issue with you and Adempas?
May 14, 2021 at 3:34 pm #30130
Hi @leslie, I am sorry to hear about your struggles with Adempas too. I am grateful that Tyvaso is working for you, and you can stop the Adempas.
Not all PH centers do the implanted pumps. It’s strange to me knowing many who have had theirs for years and still not all are doing them.
I have been on almost all of the oral PH treatments, so I am a bit lost as to what the plan will bill. I know with time and careful thought, my PH team and I will figure it out.,
Wishing you the best with Tyvaso, enjoy your weekend.
May 13, 2021 at 6:01 pm #30114Terese TuoheyParticipant
I don’t have any experience with IVs or Implants, but Adempas was the WORST! I couldn’t even tolerate the first day, with the lowest dose. Side effects were the mother of all migraines, nausea, vomiting til I had dry heaves – and a husband who swore I would never take another one of those pills! My doctor took me off it after that first day. I am now on Tadalafil and Opsumit and so far no real side effects beyond a stuffy nose from the Opsumit and nasal spray takes care of that.
I really hurt for you Jen. With the recent death in your family, the hospitalization, and now this. Prayers are all I can offer. I pray that you can find out more about this implant, and perhaps find another clinic or hospital that isn’t too far away that cn work with you on this. Blessings!
May 14, 2021 at 3:40 pm #30131
Oh No, @tervo, I am so sorry to hear of your Adempas nightmare! My hubby, like yours, was so ready to toss mine in the trash. I made it to 2 mg but no quality of life with constant nausea and vomiting and increased kidney issues.
I am so happy to hear that you have found a good plan that works for you. Sadly, I have been on most oral meds. I may try a few others to add with my Uptravi if I do not decide on IV therapy.
You are so kind and thoughtful. I appreciate your many blessings. I am sending hugs to you from Texas. Enjoy your weekend and take care. Thanks so much for sharing your experience; so sorry it was so rough.
May 16, 2021 at 11:57 am #30155Carol VolckmannParticipant
Hi Jen, somewhere my post about the implantable pump got lost in cyberspace.
I believe the Accredo nurse was referring to the subcutaneous cleo that delivers remodulin. It is not implanted in you, you attach it to your tummy and a line goes to a pump you attach to your belt.
I had that for 16 years – very painful site that you have to change. The other pump that delivers remodulin or trespostinil is an IV Hickman line – no pain because the line goes directly into a vein in your heart.
The implantable pump is not on the market. It is made by Medtronic. I have been waiting for that for years. You can go on FDA’S site for medical devices and put in implantable pump for remodulin.
All the folks who were in the trials love it and still have it. It is available all over Europe.
When it becomes available here it will be a game changer – no pain at a site as it too goes directly into a vein in your heart – no cumbersome IV line and pump.
Medtronic still has not complied with an issue FDA had with a part of the cash.
I am so sorry you are having such a really tough time with your meds. I hope your team will come up with a better solution for you and get back some quality of every day life issues.
Sending lots of loving hugs 💗 🤗 ❤
May 17, 2021 at 1:34 pm #30165
Thanks so much for the information, @cdvol3gmail-com. You are one woman of steel after 16 years of subQ Remodulin. Each of you is using that route, I applaud.
My previous PH specialist of 10 plus years said back then that he would not put me on that. I know one reason is I do not have many areas that those sites may work.
A far as the Medtronic implantable pump, I guess the Phriends that I know must hab been under the CT. I have read articles that confuse me even more on this. Some report this was FDA approved, and others not. I do think the FDA site would be most up-to-date.
After a second opinion, I did decide to lower my Adempas to 1 mg in half and recheck labs and see where we stand after a week. If the kidney issues continue to increase with it, I will go to Plan C.
I hope and pray that those like you will soon be eligible for the implanted pump. Again, I appreciate your tips. How is your new week going?
May 17, 2021 at 4:34 pm #30173Carol VolckmannParticipant
Good afternoon sweet lady, you are not confused! The FDA did approve the implantable pump – it was a pre-market approval but Medtronic needed to address an issue of a valve with the cash. To date Medtronic has not complied with what the FDA wants and so … we wait.
I hope going down on the Adempas to 1/2 works for you 🙏! I will keep you in my prayers and in my heart ❤.
This week – just saw our new general doctor this morning. No one can come close to our doctor who recently died we both miss Jeff as our doctor/coach and very good friend.
Next Monday we will meet with an ostomy nurse. Cannot say either of us is looking forward to that journey, but we will deal with it. Also have an appointment with ENT to sort out my horse voice – sexy? Hehe!
Thoughts are with you ❤ hope this week goes better for you! Hugs to you and Many, Sasha too!! 😊❤❤🐶
May 18, 2021 at 10:58 am #30180
Good morning @cdvol3gmail-com, I appreciate you confirming my confusion. Yes, a PHriend who has had her implanted pump for almost 10 years says Medtronics and the FDA can not get this sorted out. It is so frustrating as so many love theirs. So many others could benefit from using this route, like yourself.
I can only imagine how you both miss Jeff. He was not only your doctor but a friend and long-term. I don’t think any doctor you have will compare. But I hope that the new doctor will take excellent care of you both.
Thanks for your thoughts and prayers. I will be thinking of you and Dick both as you meet with the ostomy nurse next week. That is something serious, and know it is nothing that anyone wants to confront. I hope and pray that with the new technology, things with colostomies have changed. I have heard that they are improved as far as system types., etc. I am certain that you probably have researched enough, and have a list of questions that you and Dick may have will be helpful when you go.
This week is going well this far, so I am grateful. Sasha is lying in her chair next to my desk. She likes to look out the window and nap. Positive vibes and prayers for you this week, too.
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