💬 What’s on Your Calendar This June? Let’s Check In! 💜

[carol-volckmann]

Love how you presented your questions @jen-cueva , you are always so creative!

Let’s see June … weather is perfect right 🌝 now high 60’s/low 70’s and 50s at night 🌙

I have pretty much the usual: Rheumatologist, PCP, labs, nothing really exciting. I am anxious to see my Rheumatologist as my Sclaraderma seems to be acting up and giving me some worries 😟.

Our daughter is coming for a short visit which will be good fun. We do not have any plans for getting away – we love this time of the year, so we will enjoy!

Sending hugs and thank you for your post 😊❤️

[Colleen]

@carol-volckmann I’m sorry to hear that your Sclaraderma is acting up. Does it react to changes in seasons? I can’t believe it’s June already!

[Lynda]

Good Morning Carol,

I was wondering if they have related your PAH to your Scleroderma? I started out with Scleroderma and CREST syndrome around late 2018 then diagnosed with PAH late 2021 Jan 2022?

Thanks and make it a great day!

Lynda

[carol-volckmann]

Good afternoon Lynda@gizzmopt. 😊 Just saw your post. Yes, after I was diagnosed with PAH I learned that my PAH was/is caused by Sclaraderma. My PH has been quite stable for years but the Sclaraderma is progressing and has effected my internal organs which is the most concerning. Fortunately I have a great Rheumatologist who specializes in Sclaraderma and up to this point has not put me on any medications – husband words, why give you poison when you don’t need it yet. I am scheduled to see him this month and need to update him on the progression of this disease.

Sclaraderma is a nasty one, but so far I am dealing with it. I am 81 and plan to be around for quite awhile.

What has been your prognosis and how are you doing? Do you have a good team you are comfortable with?

Be glad to share anything I can to help. Sending you positive energy ✨️ and warm hugs 🤗.

Carol

[jen-cueva]

Hi @carol-volckmann , so kind and thoughtful of you, my dear PHriend. I am not that creative, but I tried to make it appear that way. I guess that worked. Hehe.

I’m sorry that you continue to deal with those scleroderma flares and issues. When is your rheumatologist appointment? I hope she has some answers and some suggestions that could offer you relief.

That sounds lovely, having your daughter visit this summer. Will you simply enjoy each other and go with the flow while she’s there? Or do you have any specific plans while she’s in town?

Yes, as I am typing. I’m out on my patio and it’s a beautiful 70 degrees with a light wind -enough to hear my chimes. 🌞 Perfect, so no complaints for me today.

Update: I am having some tests done within the next 4-6 weeks, but then it sounds like we will begin a new treatment for my PH. 💜

[carol-volckmann]

Oh boy @jen-cueva your typing!!! 😊 Sitting out on your patio, 70″‘ listening to your wind chimes in how good can it get. How wonderful my sweet friend.<div>

Having Kris here is a special delight. We are a good time hanging out, playing with Cloud, and seafood lunch at a marina. We all had Clams/Muscles linguini – mouth watering delicious 😋

I am so looking forward to your being able to go onto the new HP meds. I just hope all the tests come back saying you are ready! Fingers crossed, prayers 🙏 and positive energy with lots of love ❤️ coming your way.

Any plans to enjoy for the weekend? Love to you and Manny you are in our thoughts.

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[jen-cueva]

Hi @carol-volckmann , it sounds like you and Kris are enjoying a wonderful time together! Where does she live? NC?

And, oh my goodness, your seafood linguine at the Marina sounds mouth-watering, as you described it! It also sounds like @Colleen ‘s favorite Italian dish. She always had it at this one Italian spot in WA. Is it similar to seafood linguine, Colleen?

You ask about my weekend plans- I’ve been wanting to go have some good Italian food. So, after your post, it sounds like our plans may include an Italian spot, possibly near the water. Thanks for the craving inspiration.😋

Unfortunately, there is no update yet on the new treatment and when it will be available. They are figuring out titration with current meds and, of course, all the insurance dealings. But I’ll keep you posted. Thanks for your love and support, my sweet PHriend!🤗

[carol-volckmann]

So happy @jen-cueva that I was able to provide you a mouth watering 😋 hint to Italian feast over the weekend hehe yum yum 😋. I know you and Manny will enjoy.

Sending warm living hugs 🤗❤️❤️

[carol-volckmann]

Thank you @Colleen for reaching out. My Sclaraderma is just progressing which is not fun. The seasons do effect my PAH both cold and hot are not tolerated very well.

Are you effective by the seasons’ changes? Cullen must be. How does he cope with the extremes of hot and cold?

And … how are you doing in keeping up with your check ups? Now that summer has begun, have you been to the shore? I can smell the ocean from my memory. The Altantic has a whole different smell from the Pacific.

Thank you again Colleen for checking in. Sending warm hugs back to you filled with positive energy ✨️ and love ❤️.

[Colleen]

@carol-volckmann I am so sorry to hear that your Scleroderma is progressing! It’s not fair all that you have had to deal with medically!

Cullen has not been feeling well for the past week. He has labs, tests, and appointments on Thursday. We are hoping it’s dehydration and a simple IV fluid infusion will help him. He’s worried he might have an infection. There are also the fires in Canada that are making it’s way through PA. We are in South Jersey and I don’t think it’s reached us yet but Cullen swears the air has changed and asked that all windows be closed. Did I mention our air conditioning is on the fritz?

We shall not discuss my appointments because I haven’t made any. 😬

[carol-volckmann]

@Colleen So sorry to hear Cullen is not feeling well. Fingers crossed and pray all he needs are fluids to jump start his system. Please let us know how it goes tomorrow, you both are in our thoughts.

On top of everything here it is summer (or almost) hot and humid and your AC not working 🥵! Oh, I hope you are able to get that fixed – sending you positive energy for that, soon and not very costly!!

Thank you Colleen again for reaching out, please take care of yourself. Lots of hugs and love ❤️.

[jen-cueva]

Oh no, @Colleen , did you not get the AC fixed yet? I am so sorry, it seems you can’t get a much-needed break, my friend. 🤗

How did the update with Cullen’s team regarding his BP issues go? Was that today? I thought about calling to check in, but I didn’t want to intrude on your self-care time, though it doesn’t sound like you’ve had much of that lately. How can we best support you at this time?

I’m not at all surprised you haven’t scheduled any of your own health appointments, my dear PHriend! You’ve had so much on your plate, and being unwell on top of it all must be overwhelming. Please know that my thoughts and prayers are with you, Cullen, and your family. I hope you all catch a break soon and start feeling better. Sending love and the biggest hugs your way,

Colleen ❤️🤗

[carol-volckmann]

Hello @Colleen , I hope Cullen’s appointments and labs yesterday have ruled out anything serious. You snd Cullen have been in my prayers 🙏 and thoughts.

Hope you have a wonderful weekend where you are able relax and rest, maybe take in a walk along the shore line ⛱️🌊. Warm thoughts and hugs.

[Colleen]

@carol-volckmann he wasn’t admitted and they haven’t requested an infusion yet. Instead, they changed the timing and dosage of one of his BP meds to see if it helps. He started that change tonight so we shall see.

I hope you have a relaxing weekend and feel well enough to enjoy it!

[carol-volckmann]

Fingers crossed 🤞 and prayers 🙏 are with Cullen and yourself ❤️.These times has to be really tough on you Colleen and, of course, Cullen. Positive thoughts and warm hugs.

[Colleen]

@carol-volckmann Thank you. That med change has helped his diastolic but not his systolic. He will be updating his team tomorrow and see if they want to make more changes or try an infusion to see if we can get him better balanced.

[carol-volckmann]

Good morning @Colleen The Rollercoaster just keeps on going. I am so sorry Cullen’s system is still off balance. Hopefully he and his team will figure out what to tweak today! My heart, prayers are with you and I am sending you ❤️, positive energy and always with a warm hug.

[Colleen]

@carol-volckmann Thank you. How are you feeling this week?

[carol-volckmann]

Thank you @Colleen for asking. I am feeling pretty good this week. Dick’s daughter, Kris, is visiting which is a delight. <div>

Health issues are not too bad this week. I will be seeing my Rheumatologist next week and hopefully work up some defense from my Sclaraderma. This morning I kinda had a major head bleed for no apparent reason. Under control now, but that is never fun especially because your head bleeds so easily. This is the main reason I am not a candidate for the injection of remodulin.

Hope your week takes a positive turn! Lots of love coming your way.

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[Colleen]

@carol-volckmann A head bleed sounds so scary! Do you know how to care for it when they happen, or do you have to go to the ER? I really hope you have a peaceful weekend free of major health issues!

[carol-volckmann]

Yes, you are so right @Colleen , head bleeds are scary 😨 Dick was right there and could pressure on it and then got that stytic power. Even after my shower a day later a combo of the power and dry blood is still doing its job. <div>

The bleeds are another Sclaraderma cause. So far we are able to control it so don’t have to go to the ER.

Thank you Colleen for your message. You are always right there reaching out. It really means a great deal

Weekend ahead will be relaxing, warm days cool nights

I you are able to have a restful weekend and pray Cullen is doing much better. Warm hugs 🤗❤️

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[Colleen]

@carol-volckmann thank God you and Dick have each other. As my Brian would say, “You make a great team!” I hope this will be a better week for you both!

Cullen has labs and an appointment with lung transplant today. His specialist just returned from vacation. She took one look at his labs and knew what was causing his BP issues. It’s probably due to a medication he started months ago and it’s not starting the side effect of messing with his blood pressure. Needless to say, she is taking him off of it and will try something else. We are hoping this will do the trick.

[jen-cueva]

Hi @Colleen , I’m so glad to hear that Cullen’s specialist identified the cause of his blood pressure issues. I truly hope that taking him off the culprit resolves the problem and that whatever medication she prescribes instead works smoothly without any side effects. Poor guy—he’s spent his entire summer vacation dealing with illness and health challenges.

Thinking of you both and hoping you can catch a break from health concerns and appointments. Wishing you at least a day (or more!) to relax and enjoy what’s left of his summer break.

🙏🌞🏖

[jen-cueva]

EEK- My apologies, @carol-volckmann, man, how did I miss “a massive head bleed”? That shows you how hungry I got reading your posts. That is scary as heck, I can imagine! Thanks to you, @Colleen for catching that and addressing the issue.

How frightening for you and Dick, both! What if that happens and he’s not home? Could you get to the phone to call 911 or for help? This is concerning and worries me.

I know with Manny, anything with blood is even more concerning for him. We are fortunate to have such incredible partners to care for us.

Has that happened any more since last week? Do they think your blood needs to be thicker? Are you on anything for that? With scleroderma, I know it can make things complicated with our PH treatments, and also for the blood vessels.

Positive thoughts and prayers are with you this week, and hopefully, no more bleeding, my dear PHriend!🤗🙏💜 Take care of each other!

[carol-volckmann]

Hello sweet PH friend @jen-cueva I have had bleeds before. Thank you so much forvyour concern and loving care! This time it seem to came without any reason and of course head bleeds are scary but seem to look worse than they are. This one was pretty bad.

Dick was right there and using pressure and lots of that stick to stop bleeds finally worked. This is the second reason I am not able to have Winrevair plus because of my low platelets.

If Dick were not here I would be able to call a neighbor and/or 911 and just keep pressure on it.

I will be seeing my Rheumatologist next week and see what he might have in mind maybe go off the 81mg Aspirin. I had not heard of a blood thickener.

Thank you again Jen, I promise I will try and nit scare you again hehe!

Lots of loving ❤️ hugs!!

[jen-cueva]

Hi @carol-volckmann , Please don’t scare me like that again—yourself, Dick, or me! I’m so relieved to hear there haven’t been any more bleeding episodes. Head bleeds are incredibly frightening. I experienced one a few years ago after a fall, though thankfully I don’t remember much about it, but Manny does!

It does sound like the ASA might be discontinued. Once you’ve seen your Rheumatologist, please keep us updated on the next steps to help prevent any future episodes.🙏

If you’re having trouble replying to one of @Colleen’s posts, try logging out, clearing your cookies and browser history, and then logging back in. If the problem persists, let us know. I checked and haven’t seen any recent reports of forum issues over the past few days.

Sending you lots of love, extra hugs, and sunshine as we head into the weekend! Take care.🤗🌞

[jen-cueva]

Hi @carol-volckmann , how are you this week? How have things been with appointments since your last update? Have you tried posting again and experienced any trouble?

Please let me know and I’m happy to help in any way I can.

Thinking of you and Dick this week (Mr. Cloud, the energizer, too), and sending you three extra gentle hugs, love, and along with positive thoughts and prayers for the weekend ahead, my dear PHriend.🌞💜🤗

[carol-volckmann]

Good morning sweet friend, you are always there with your support – thank you.<div>

It has been a busy week, I am glad it is almost over. I had my appointment with my Rheumatologist which lasted for over an hour. I will now need to be on meds for my Sclaraderma – infusions. Actually the infusion is only approved for Rheumatoid Arthritis and not Sclarderma, Dr Furst is putting in my notes that I have RA so it will be covered by insurance. I am not looking forward to this, but will deal with it if it is going to slow down the effects of Sclaraderma.

I also now have osteoporosis in both hips so will be going on some oral new meds.

The only other issue – SIBO bloating. My Rheumatologist was me to undergo some test to see if the bloating was caused by the surgery when I had my colostomy. The bloating stated shortly after the surgery. So, we shall see after some tests.

The good news is all my labs were good except the low platelets, so need to watch those levels.

Dick’s PT is working, but slowly. I try and take care of things that he normally did to give him a break especially those things that are more difficult for him.

It’s a great thing how we take care of each other – no fanfare, we just do it.

Meanwhile Cloud keeps us going as we must walk/run him for his exercise. He has a ball and is so happy – such a good boy.

The only person I continue to have problems answering on the forum is Colleen. It will kick back with “error cannot post” I hope all is well with her and Cullen – they have been through so much. And I do hope Collen AC is now fixed.

Thank you sweet friend for reaching out. Hope are you doing??? Lots of warm hugs, positive vibes and always with love ❤️.

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[Rivegauche610]

I’m more interested in the Cereno CS-1 Phase 2b trial. If you don’t know, this stuff REVERSES the PH vascular narrowing. Late 2026 target.

[Colleen]

@Rivegauche610 Thank you for sharing your knowledge on this topic! It sounds hopeful, just wish there was hope for it sooner for you and other patients.

[hkt]

No PH doc appointments this month. I am going on a short 5 day trip with my daughter (age 26) mid June. She got into KPop (Korean Pop) maybe about 2 years ago and has gone to many concerts in Canada, New York, New Jersey, and Washington, and since she is always listening to it, I wound up enjoying it. One of the biggest groups currently is Stray Kids and she was going to the Washington concert with a another family member in June. I could not afford the astronomically high ticket price (because they did VIP seating) and told her I would live vicariously through her. For Easter she made me a little basket with goodies and a plastic egg that had information about the New York City performance that she also bought tickets for her and I to go to. So, we are going to the performance and then staying in NYC overnight (I’ve never been to NYC) and doing something that day. Then we are driving to Washington, so that my daughter and relative can go to the Washington Stray Kids concert. We’re staying overnight and going to some museums the next day and then coming back home. I’m a little nervous, due to the fact that I have tanks that I use if needed, but I don’t have a portable concentrator and can’t get one now that my oxygen is above 88, with the 4 PAH meds I am on. It’s good, I know, but was hoping I wouldn’t have to bring tanks with me, as we will be walking to the subway/concert/around NYC/and then walking to the museums in Washington.

[Colleen]

@hkt You have an exciting month ahead of you! Your daughter sounds so sweet! I’m sure you will have a wonderful time. Have you told your doctor about your plans? I wonder if they can do something on their end to get you approved for a portable just for travel, or give you suggestions on renting one? It wouldn’t hurt to ask. Emphasize that it would make you feel safer to have one.

[Lynda]

Have you tried renting a portable O2 machine? That maybe your best bet. I had to buy a very expensive rolling portable machine because I needed continuous 2.0 O2. I know prior to that I could rent them for cruises etc. The Dr would write a note stating I needed one. Maybe your Dr knows a company or has ideas? Happy travels!

Lynda

[hkt]

I have not tried renting. Where do you rent from?

[jen-cueva]

Hi, @hkt , some links you can call and inquire about rentals are below. They are the only companies I’ve heard others rent from before for traveling. They are only suggestions, usually the best bet is to call whoever is providing your current oxygen supplies.

Oxygen to go – https://oxygentogo.com/portable-oxygen-concentrator-road-travel/

Advanced Eromedical -https://www.aeromedic.com/

Scootaround- https://scootaround.com/en/oxygen-rentals

oxygentogo.com

Rent a Portable Oxygen Concentrator for Travel | POCS | Oxygen to Go

No matter the unit you need or where you're going, we have the portable oxygen concentrator rental for your trip. Our support agents are licensed respiratory therapists and available 24-7.

[hkt]

My doc does know. He suggested calling my oxygen company, but honestly, they are a complete joke. Worse comes to worse, I will take my tanks.

[jen-cueva]

Hi @hkt, wow, that’s cool! I have never been to NYC either, and it’s on my travel list! What a fun and thoughtful surprise from your Daughter at Easter!

I know a few PHolks who, when traveling by car, carried the large tanks to travel. I had rented a portable oxygen concentrator (POC) a few times before I purchased mine, which I used for travel while flying. Let me find some posts that I think will be helpful for you, where I shared and others shared about traveling and renting a POC.

You can look through some of these conversations where others share their thoughts about oxygen.

https://pulmonaryhypertensionnews.com/forums/forums/search/traveling+with+oxygen/

Do you use Apria for your oxygen or another durable medical equipment (DME) company?

I hope you take pictures while traveling and share them with us here. Please let us know if you need assistance.

pulmonaryhypertensionnews.com

Just a moment...

Just a moment...

[hkt]

I have Lincare as my oxygen supplier. They haven’t always been the greatest. I’ll def take pics and post. From photos and videos we are seeing of the concert, it’s massive and really impressive. But really, I’m just so thankful that my daughter wants to hang out with her momma. 🙂

[jen-cueva]

Hi @hkt , thanks for the update. I hope you will certainly share more about your trip with your daughter once you return. Oh, I know, my daughter (KK) was just here visiting for a few hours this morning and had lunch with me. It’s always precious time spent together. 💜

I can relate that grateful your daughter wants to hang out with Moma Bear. 🤗

[Lynda]

Good Morning to all!

I will be leaving for Africa on the 7th of June returning the 24th to travel to several different areas and countries for sight seeing and safari’s 😃 Before I was diagnosed I had been to South Africa in 2018 for a safari and it was the most amazing experience I had ever encountered! (not like going to the zoo) lol. I have always wanted to go back to see the Great Migration so now that I am stable that will be one of my destinations!

Make it a great day all!

Lynda Pinto

[Colleen]

@Lynda oh WOW! I am excited for you! Safe travels! I hope you will post some pictures here when you return. We will live vicariously through you, my PHriend!

[jen-cueva]

Hi @Lynda ,you should be on your safari adventure with your mom! I hope you have a wonderful time and create many lasting memories together! Please take some pictures for us all to share when you return!

I’m so grateful you are in stable enough condition to go out and enjoy such a fulfilling lifelong dream! Safe travels and enjoy every moment!🦓

[Terese]

Hi Jen and Colleen! My June has only a couple of dr. appts, lots of lunches out with friends, and a trip back to my hometown of Buffalo, NY to visit family. My cousin will be 80 and I’ll be able to see a lot of family all in one place! I hope Cullen is feeling better soon!

[jen-cueva]

Hi @Terese Tuohey , it sounds like you have a busy but fun-filled June planned. Summer trips to celebrate milestones, like the one you’re having with your cousin, are fantastic! I hope you have safe travels and enjoy the good days and rest in between. 💜

How are you feeling this week? Are you feeling pretty good?

Thanks for your update as always, love heariung what’s going on with you and your hubby!🤗

[rebecca]

I am protesting in Austin on Saturday. I am feeling good and am protesting while on portable oxygen.

[jen-cueva]

Hi @rebecca a whittaker , Wow, that’s such a big win! It’s amazing that you felt well enough to join the protests over the weekend. Do you live near Austin? How was the heat?

What do you think made the difference in helping you feel up to participating? Have you recently started a new PH treatment, or has something else changed? People always love hearing about how our PHriends are doing better, even if progress can vary from day to day. Your story could be so inspiring to others! Thanks for sharing your update with us.

[Terese]

Here’s one for you. … Tim and I just bought new beds. Old mattresses were giving us body aches. Decided on a Sleep Bed. Found one, bought it and got it delivered yesterday. NOW they hand us the ‘user guide” and it says: NOT RECOMMENDED FOR USE WITH O2! (because of the motor and electrical stuff that works the bed) Why didn’t they tell us? Because I didn’t mention this to the salesperson. I used O2 at night…. So now we set up the bed and have to unplug it at night so I can use my O2. That means no bed adjusting at all during the night. But it was pretty comfortable. So I guess we’ll figure it out. We have 100 days to test it and return if needed.

[Colleen]

@Terese Tuohey wow! I had no idea that would be a concern! We almost bought one for Cullen when he had PH in an attempt to make him more comfortable. I wonder what other products are out there that we don’t realize would be a concern when using oxygen. This would make an interesting column! Thank you for sharing! This is important and unknown!

[jen-cueva]

Hey @Terese Tuohey , Weird, I had no idea about that! Manny and I got an adjustable bed about six years ago, and no one ever mentioned it to us. Every night, I use my oxygen and elevate my head with the adjustable bed—it’s been a game-changer for me. But it is getting old, and we think we need a more comfortable one, which we hope to purchase soon.

Now I’m curious if your bed is a “Sleep Number” Bed, which is more of a “smart” bed, as mine is only adjustable. Let me know when you get a chance and what your plans are with yours. That’s valuable information I’ve never considered, but then again, all this innovative technology has better brains than mine, most days. LOL.

Thanks for sharing, and I’m hoping you both are sleeping better and can figure it all out soon.