What is on your medical calendar for July?

[Cris]

I have a CT scan in mid July. I have pretty bad RA and they panic over nodules in my lungs. Then at the end of July, I have a pulmonologist appointment just for follow up. THEN, I get to have a week of fun. My sister is coming in so that will be extraordinarily fun. She lives on the Gulf Coast, I’m in Cincinnati so this doesn’t happen often that we’re physically in the same room. Watch out, world!

[Colleen]

@Cris Dingman How are you feeling? Do you have any concerns about the cautionary CT scan? I am hoping for good news and hope you will update us when you can.

It is awesome that you will get to spend time with your sister! What sort of trouble…I mean fun do you have planned? I’m excited for you!

[jen-cueva]

Hi @Cris Dingman , it sounds like you have a busy month planned. But I am happy to hear you also have some fun adventures mixed in, too. How are you feeling about your upcoming CT scan? How often have they been doing those for your lung nodules? Sending you extra positive thoughts and prayers as you undergo your CT scan and follow-up appointment with your pulmonologist.

That sounds like such a fantastic time for you and your sister—catching up and creating a little chaos, haha. Which part of the Gulf Coast does she call home? I was born in Mobile, AL, and still have family across the Mississippi and the Florida Gulf Coast. Be sure to take plenty of pictures! If you’re both comfortable, you could even share one here for us to enjoy.

Have a wonderful weekend, my dear PHriend!😎🌞

[carol-volckmann]

July! How can it already be July? My calendar I guess is quite busy. I have a bunch of test: PFT, some more tests to find out what is causing my bloating as nothing seems to be working. Need to swallow some radioactive material and find out what is happening in my gut (it looks like I am nearly 6 months pregnant!), and more labs, of course.

New meds added now for osteoporosis and more vitamin D. Fortunately I am able to tolerate the oral meds, once/week so I do not have to have the injections nor infusions.

Making it a point to get together with friends and taking Cloud (training continues) to new places, and new environments. He really is doing so much better.

Happy July everyone – stay well be safe and enjoy each good moment! 😊❤️

[Colleen]

@carol-volckmann Has your PH specialist chimed in regarding the bloating, because distension can be a symptom? Here is a link to a discussion about this in case you are interested.

https://pulmonaryhypertensionnews.com/forums/forums/topic/do-you-manage-uncomfortable-swelling-and-bloating/?no_frame=1

Visiting friends and adventures with Cloud sounds like a nice summer to me, minus the health concerns, of course.

[carol-volckmann]

Hello @Colleen , it occurred to me what does your calendar look like for July? It is crucial that caregivers take care of themselves and their health issues. As a

patient/caregiver sometimes I forget what I need to do and tend to put off appointments when I see what Dick (my caregiver/patient) needs are to see to his health issues.

How is Cullen doing so far this summer. I know the heat and humidity must be taking is toll. Are you both able to get to the shore for cooling off?

Thinking of you Colleen and sending you lots of positive energy ✨️ and love ❤️.

[Colleen]

@carol-volckmann You are so sweet for thinking of me! I appreciate it!
July has been busier medically for my parents but not too bad with Cullen. We both had denist appointments this week and next to schedule are eye appointments.

We haven’t made it to the shore yet but it is in our plans before summers end! The heat has been managed thanks to air conditioning! How is the heat treating you and Dick?

[carol-volckmann]

Thank you so much @Colleen for your sweet thoughts. Here on the peninsula we are not getting the high temps. Our honest day was yesterday and our high was 81 today high 71. We have been really lucky.

So glad to hear your AC is doing its job and keeping you and your family cool.

You are sonthoughtful in sending me the thoughts of how others on the Forum are dealing with swelling and bloat. I am also on Lasix and do not have any swelling. It seems, so far, no one has any new ideas for my bloating.

I have been on the food map, various and numerous antibiotics, I am not constipated nor have diarrhea, I am not in pain just very uncomfortably distended. It is very frustrating 😤 It looks like Iam 5-6 months pregnant 🤰 😳. I am just hoping someone, somewhere is going to figure this out.

Colleen, you are in my thoughts and prayers taking care of your folks. Wishing positive outcomes, energy snd always sent with loving ❤️ hugs 🤗.

[Rivegauche610]

My Yutrepia was approved by the VA and arrives tomorrow. I have to wait for an ACCREDO nurse to show me how to use it. Yutrepia involves twice the number of puffs as Tyvaso (and it is a little more complicated to assemble and use than Tyvaso) and I’m supposed to rinse and spit after my inhalations which I do not care for, but we’ll see (I am used to drinking cold water before a Tyvaso puff and then drinking and swallowing water again after). You also have to inhale twice for each dose and I will have two doses q.i.d which means four inhalations. So Yutrepia is a little more cumbersome, and it also has, technically, the same SEs as Tyvaso, but who knows? Gotta try it and see how it goes. Besides, I feel like my Tyvaso dose was in need of an increase anyway.

[Colleen]

@Rivegauche610 yes! I’m so happy for you that it was approved. I hope it makes a big difference for you and that the extra puffs and complicated assembly become routine and not problematic. I’ll be anxious to hear updates from you.

[jen-cueva]

Hi @Rivegauche610 , I’m sorry you are not loving the transition from Tyvaso to the Yutrepia. What was the reasoning for switching you over to Yutrepia? Were you on the Tyvaso or Tyvaso DPI before switching?

I started Yutrepia yesterday, and I take a sip of cold water before. I only do two breaths 4 times per day. Of course, I started at the lowest dose and will increase it each week. I was instructed by the Accredo nurse to wait about 20-30 minutes before gargling with warm water afterwards. I know she said it helps prevent the development of white patches on our tongue and in our mouth (thrush). Have you experienced any side effects? So far, only headache, lightheadedness, and cough for me.

Have you started yours yet? How’s it going so far? Have you found a better schedule that fits into your routine? I’d love to hear about your transition progress!

[Rivegauche610]

I was typing my previous entry before I had even received any Yutrepia. Now that I have used it for a week, I’m happy to say it’s excellent. Much better than Tyvaso, and much easier to tolerate. As with every pH med we take, I will titrate up until I feel uncomfortable, and then go back to the previous dose. And I don’t rinse and spit, I just drink some cold water and I’m fine and it doesn’t matter how many puffs I have to take because I know the medicine is working. I feel very different with Yutrepia than I did with Tyvaso and in almost every way better. This morning Dr. Lachant also told me that there is a twice daily inhaled treprostinil in the pipeline and that’s very exciting news.

[jen-cueva]

Hi @Rivegauche610 I’m so glad to hear that you’re already noticing improvements since starting Yutrepia—and it’s only been a week! I’m slightly behind you in my journey, but I’m hopeful for similar results. I’ve noticed that when I take those deep breaths, I can feel the medication working—you can sense it in your lungs and even taste a hint of it afterward. Do you experience the same thing?

Thank you for sharing your positive experience transitioning from Tyvaso to Yutrepia. I hope this continues to be an effective treatment for you and brings you lasting benefits.🤗

[Colleen]

@Rivegauche610 I’m so happy to hear that you have found a treatment that is working well for you. It is often a case of trial and error. What works well for one patient might not work well for another. You never really know until you try, and I’m so glad you didn’t give up on finding what is best for you!

[Randolph]

Greetings. This is as good a place to let you know where things are for me. I discovered in two on line meetings moderated by Cissy, that I was the only one with CTEPH out of 21 folks. I have finished my PT, somewhat challenging and back to having my INR mesaured once a month. Since my long stay in the hospital I am back to being active.

Today I had a CAT Scan checking my lungs. The pneumonia has long gone.

My prescence with my oxygen dragging behind me definitely sets me apart in the places I go.

Again I wonder what has happened to the men with PAH.

Blessings

[Colleen]

@Randolph Reynolds You have put a lot of time and effort into achieving this good news! I’m so happy to hear that you’re out of the hospital, active, and your test results are showing improvement. I know you wish you could kick the oxygen, but if it’s helping your lungs put one foot in front of the other, then it’s worth the love/hate relationship you have with it.

[jen-cueva]

Hi, @Randolph Reynolds , I’m so grateful to check the forums and see an update from you, my PHriend! It’s wonderful to hear that pneumonia is now behind you and that you’re getting back to being active. While having to carry the oxygen around might be a bit frustrating, it’s great that it allows you to engage in more activities again.

It’s fascinating that you were the only attendee with CTEPH in a group of 21 people. I hope the online meetings provided valuable insights. Were you also the only male with PH in the group?

Thanks for the update and take care, buddy!🤗

[Terese]

HI, Colleen! Long time, no talk. I’ve been on a medical marathon of testing since I had a spell of ‘not feeling right’. Whatever it was that caused rapid heart rate, lighthheadedness, and malais, it’s gone now. All my tests proved that though I’m not 100%, my heart has gone back to normal size and nothing is so wrong that is needed medical intervention. God is Good! How about you with your folks?

[Colleen]

@Terese Tuohey Well, I’m very sorry to hear you were forced to partake in a medical marathon, but very happy to hear you got through it with good results! Were you given any thoughts or results that pointed to what might have triggered the temporary decline? Now that you are feeling a bit better, what have you been up to? I hope you get to enjoy what remains of summer. It’s going by so fast!
My parents are doing ok. Thank you for asking! Dads dementia is worsening and I’m trying to find more help in caring for him but for now, I’m managing.

[jen-cueva]

What a blessing of good news @Terese Tuohey ! I am so thrilled to be online and read that your precipitating symptoms have resolved! I hope and pray they stay at bay! But wonderful that, although you aren’t 100%, your heart is back to its normal size – what a huge win! 🤗🙏

Now that you’re feeling better, what have you been doing this summer? It sounds like you should enjoy some fun and take a break from medical appointments, my PHriend!💃

[Terese]

Colleen,my Mom passed from dementia so I totally understand your situation. Get all the help you can, and when the time comes, don’t feel guilty about placing your Dad in a care home if it’s necessary. Re: summer plans, not much. Although Tim and I are going to try for a real vacation early in September and head north in MI to Mackinac Island and maybe some late summer beach time. Jen will be jealous, since I know how much she enjoys the beach.

[jen-cueva]

Hi @Terese Tuohey , yes, taking care of someone with Alzheimer’s and dementia takes a toll on us physically and mentally. I know Colleen will appreciate your support, and I couldn’t agree more that she should ask for all the help she can get! 💜

Makinaw Island sounds lovely, and you know you can share images in the forums- and you know I will want to see some. That is a place on my visit list, too! You know me too well, Terese!🏖 👙 Keep us posted and take care, dear, PHriend!

[Colleen]

@Terese Tuohey I am so sorry to hear that you lost your mother to dementia. It is an awful and heartbreaking disease. I appreciate your love and concern. I’m trying to find a care facility for my dad, but he has Medicare, and I can’t afford the out-of-pocket costs for all the places I have researched. I’m trying to get help from the VA because my dad is a retired Marine, but I can’t find his discharge papers, and I have received no response to the forms I filled out to get a copy. If any of our former military personnel have any suggestions, I would really appreciate it!

I think September is a lovely time to travel/vacation. You start to see hints of the seasons changing and it is usually cooler. I hope you get to enjoy your plans!

[jen-cueva]

This month has been quite busy, but the biggest update is that I started Yutrepia, the new inhaled treatment for PH, over the weekend. I’ll be gradually increasing the dosage each week for a while—just part of the process, as expected. I’m staying optimistic and patient, knowing that progress takes time.🤞

I had a follow-up with my bone specialist, who confirmed it’s osteoporosis. She mentioned the treatment options, but needs to discuss them further with my nephrology team, so I’ll keep you updated on that. This past month has been packed with lab work for the PH team, tests for my nephrologist, and additional evaluations for the bone specialist.

Fingers crossed that’s all for me this month! August will kick off with some PH tests and a clinic visit scheduled around the 12th. How has your month been, everyone? As we wrap up another month, let me know how we can best support you!

[Colleen]

@jen-cueva, I am so sorry to hear about the osteoporosis diagnosis. Cullen can empathize because he has it too. He has a bone density test once every year or every other year, and each time it shows that it is worsening due to his transplant medications. He can’t take any of the treatments for osteoporosis because it would interfere with his meds, and I think his kidney’s too. Don’t quote me on that, but it might be good to question this with your doctor before they start treatment. The best they can do for Cullen is Calcium and other supplements. He has to be very careful because he has been told he can break bones easily.

I’m really sorry that you have this additional concern, but yay to the new PH treatment! How are you feeling on it so far?