Plateaus in PAH

[jen-cueva]

Hi @ripple76, I am sorry to hear about the plateaus. I know that vertigo and dizziness are no fun and can be dangerous. So, please be careful.

Old age? Who is getting old, lol? I try and blame everything on PH and low oxygen, never getting older. Or, some like to say, “less” young, LOL

Here, even on days when I am indoors in the AC all day. I am more tired by about 3-4 PM. The heat is what I blame. It never fails; I am weaker and more fatigued in the summer months.

I wish that I could help you. But I do not have CTEPH. But in general, with PH, I see many who at times reach plateaus. I know not knowing can be frustrating.

Does anyone here with CTEPH have any thoughts for Randy? @mamabear007, has your son experienced these plateaus and symptoms that Randy is describing?

[joyce-sandberg]

Randy,

I am a CTEPH patient.  Are you sure your saturation levels are where they should be.  Check your readings during the day and adjust your oxygen liters to keep saturated properly.  I get tired as well and sometimes a little dizzy.  My sleep is affected, 3 to 4 hours in bed and then up again to the recliner for another 3 hours.  I have tried xtra strength 500 rapid disolve tylenol along with zyrtec before bed.  I recently purchased zzzquil by vicks.  Still the same pattern.

I use an electric chair as well and sometimes my tubings get an unseen split and my oximeter shows a lower sat level.  After exploring I finally find the reason is a leaking tubing.  We, who are on 24/7 oxygen have many challenges to work out. It keeps me busy doing all of the above.

I will be 80 in December and plan on a cruise to celebrate with my husband.  Are you on any special CTEPH meds?  I am on Adempas, Uptravi Eliquis and an inhaler daily.

Talk about side effects, but if it keeps the progression down, it is worth the side effects.

Good luck to you and I hope you are feeling better soon.

 

 

[jen-cueva]

Hi @joyce-sandberg, thank you for sharing your experiences with CTEPH. I know that he appreciates it as well as others who may also have CTEPH.

Yes, so many things to figure out when on oxygen 24/7. Have you caught yours in the fridge or freezer yet? That and getting hooked on my kitchen cabinet handles are going to hoke me one day. I think that my hubby may remove the knobs for this reason.

Are you finding that the Zyquil is helping you sleep?

When is your next cruise? In December maybe or your birthday celebration? Where to? You and @ripple76 are both celebrating big milestone birthdays this year. Congrats to you both.

[randolph-reynolds]

Joyce

I am surprised that you are able to take a cruise.  Being on oxygen would seem to prevent that from happening.  How are you going to manage it?

I am on Adempas and take Remodulin subcutaneously.  When I begin to feel ‘tired’ or listless I check my oxygen.

I turned 80 about a month ago. It is nice that you reached out to me.  I cannot attend my son’s wedding due to the multiple problems of having to take my large concentrator and all the necessary other things like O2 tanks and Remodeling pumps.  We live in Arizona but he lives in San Francisco. If you have a workable scheme for going on a cruise I would appreciate some guidance.

My wife and I have been on numerous cruises before I had go be on oxygen 24/7.  She misses not being able to do that.  I wish you the very best.

This little sub-forum was supposed to be entitled Plateaus in PAH.  I hit the enter key too soon.

Randy

[v-r-peterson]

@ripple76, you may want to check with your oxygen supply company and specialty pharmacy, so see if they can send oxygen and your Remodulin to the motel/hotel where you’d be staying. Before you do, check with the hotel and ask if they’ll hold your supplies for you should they arrive before you do. Different hotels have different rules for that type of thing.

[jen-cueva]

Hi @ripple76, I know that you appreciate the information that Joyce shared. I do know that many have traveled on a cruise with oxygen. As @mamabear007, calling your oxygen company ahead of time and having them have the tanks delivered to your destination before your arrival works well with most.

Would you be flying or driving? When we had to evacuate for a hurricane one year, I had my hubby, my home concentrator, and a ton and variety of sized oxygen tanks. I did not have my POC at that time. That worked well. I also met a PHriend at one PH conference who traveled 10 hours, and her vehicle was loaded with portable tanks of all sizes, too.

I do think that these things can be planned for ahead and will work. Please let us know how we can best support you.

I will edit the title of this sub-topic, No worries.

Thank you, @mamabear007, for the information about calling the hotels ahead of time. Excellent tip

[randolph-reynolds]

Jen

I appreciate all the advice.  I’ve made a detailed investigation how to get from northern Arizona to Sonoma CA for my son’s wedding.  These are the problems I encountered.

1. I looked into renting an RV and carrying tanks then exchanging them in California but my oxygen supplier is only local (Phoenix and Prescott).  In order to get a national supplier like Rotec I’d have to go through a complicated process with Medicare, my pulmonologist, and the supplier.  Probably not doable.

2. My night time concentrator that I would need to take is heavy and the RV would have to be modified for AC current.  Some sort of inverter would have to be put into it.

3. I would have to move the concentrator three times as I would go from my brother-in-laws house to the hotel then back to my brother-in-law.

4.  Carrying my Remodulin supplies I have worked out but there is some risk and living with it at home is complicated enough.

5. The events planned for the wedding are going to take place over two days and in two different places.  The number of tanks I’d need was problematic.

Considering all those issues I concluded it just was not going to work and my wife would be concerned the whole time.  She will be attending.  Since my son and his bride to be are visiting now they understand the issues and we are now celebrating our 54 anniversary.  I’ll watch the wedding on Zoom.

Randy

Ra

[jen-cueva]

Oh, @ripple76, I knew that you had checked on many options. I do hate that you didn’t find a solution to get there.

I am grateful that they will be on Zoom. Wow, times like this make a world of difference for so many.

@mamabear007 attempted to respond to you but wAs not successful. Here is her response to you, Randy. She has some helpful tips and shares her experience with her son and CTEPH.

Everything below is the text of my attempted answer to him: @ripple76, my son has CTEPH. When he started getting more tired than normal, it was because the surgeons weren’t able to get the most distal clots during his PTE (Pulmonary Thromboendarterectomy) surgery. He went on to have two BPAs (Balloon Pulmonary Angioplasties) to open up blood flow in his pulmonary arteries. Some other CTEPH patients in the PHA CTEPH Facebook group have mentioned that this was an indication either that they have re-clotted or that they needed a new medication added to their regimen. Have you had either PTE or BPA? In any case, I recommend you see your PH specialist ASAP. It could be minor, but it could be something that needs attention. When my son experienced this, his specialist ran the RH cath and VQ scan just to make sure his pressures hadn’t worsened after the surgery and that he hadn’t gotten break-through clots (which sometimes happens).

In his case, it was neither. As far as old age causing it? My son was in his early 30s, so that wasn’t it for him. One more suggestion… If you don’t have an oximeter, get one. If you write down your oxygen level at various times during the day (along with what you were doing when you took the reading), that will give your doctor helpful information, so he/she will be able to better help you.

[v-r-peterson]

Thank you, @jenc. The problem with posting seems to be the longer posts.

@ripple76, I think you’d find lots of help on the PHA CTEPH group, as well. We have more than 1,000 members who are willing to share their experience to help everybody. The link is https://www.facebook.com/groups/PHACTEPH/

If you decide to request membership, be sure to answer all three qualifying questions, as that will expedite your membership.

[randolph-reynolds]

Not sure what is going on. Sometimes my posting works sometimes it doesn’t

[jen-cueva]

Hey @mamabear007, and @ripple76, my apologies that you both continue to have issues posting. I have sent this feedback to our IT team, hoping things work better this week. I realize that this can be frustrating.

@mamabear007, Randy wanted to share this message with you. It would not allow him to respond with that answer.

I suspect that you haven’t picked up on the fact that I was diagnosed with CTEPH seven years ago. I was deemed ineligible for PTE. The management of my PAH is going well with my specialist. Your son’s experience with the surgery must have frightened you. I presume he is doing fine now.

[v-r-peterson]

@ripple76, I’m sorry you’re ineligible for PTE. Yes, I was a bit of a basket case during my son’s surgery — mostly because the surgeon told him that they could help him but not cure him. Seems some of his clots were too distal to be reached. Even so, the surgery improved him much more than even the surgeon expected it would. It dropped his pressures from more than 100 to 27. A year after his PTE surgery, he went on to have two BPAs, which helped a bit.

[jen-cueva]

Thanks for sharing that experience,@mamabear007. I can only imagine how much of a basket case you were. I know that you had hopes of some improvements.

I am grateful that his PTE surgery and his BPAs have been beneficial. That is a massive pressure drop, amazing results!

How is he doing now? Is he still managing the meat department? I am certain that you continue to worry about him no matter how good he is feeling. Your name is “mama bear.” We always tend to worry, so having a health concern like this must make it more worrisome.

I am certain that being married to a nurse helps you both.

[v-r-peterson]

Thank you, @jenc. He’s doing well. Yes, he’s still managing the meat department. As a mom, I have to admit that I worry about all my kids. Thankfully, I don’t worry any more about him than my other two. Maybe even a little bit less, because the other two live several states away from me. He lives a 20 minute drive from me. Knowing that he’s married to a nurse helps a lot! He’s always been one to play down health issues, and she just won’t let him do that. I bless the day he met her!

[jen-cueva]

I can understand the worry, @mamabear007. I only have one, and she is now in California for 6 months, so I worry bout her more. When she is local, and I can see and visit her in person, I am happier and less stressed.

I am happy to hear that your son continues to do well and manage the meat department. Yes, I bet having a nurse keeps him in check much more than he wishes. I am so grateful that it happened that he did marry a nurse. Plus, it is less worry on your end, most definitely.

Is the youngest of your children?

It sounds like you see them often. Or, do they keep busy with working and other things?

[v-r-peterson]

Yes, @jenc, he is my youngest. I get to see him whenever I go grocery shopping. I don’t talk to him much because I really don’t want to take him away from his responsibilities, but I can at least see (with my own eyes) how healthy he looks. ????

[jen-cueva]

Aww, yes, @mamabear007, I agree. Looking at him with your mama bear eyes, you know enough on a few minutes and just seeing his in-person to not worry so much about him. I get that. I am happy that you see him when you do shop, even if it is for a few minutes.

I thought that he is your youngest but thought I made that up, so maybe my brain is working today, hehe.

Enjoy a nice realizing weekend—big hugs are coming your way.

[v-r-peterson]

Awe thanks, @jenc! ????

[jill-upshaw]

Don’t know if you are on oxygen or not but I am and I am on Adempas, etc. Definitely tired, dizzy, and short of breath from lack of oxygen. The oxygen helps clear it out but rest is needed for sure.