Hi @azad, it’s great to see you post an update. Usually, iron infusions are needed every few months, or some last every six months or longer. But just as iron is necessary, too much is not good either.

You mention your son’s doctor won’t give him the iron. Has the doctor suggested some iron-rich foods? What about any iron supplements?

Once… Read more

Hi @carol-alexander, my apologies; I’ll link some information about HHT, a genetic disorder, with abnormalities the blood vessels below.

CDC-HHT

PH and HHT- PHA

I put my feet in the sand and did a short bike ride in La Jolla yesterday. It was a beautiful day, even with the busyness of tourists trying to soak up those last days of… Read more

I am a care giver of IPH patient. He is my 20 years son Mr. Mahir. His iron level was very law near about 10. He received two  injection and his iron level had increased and oxygen level was also increased simultaneously. But his doctor refused to infused him iron. It may not be safe to infuse frequently. Any one have any idea to increase… Read more

@cdvol3gmail-com darn, I was hoping maybe you were starting to feel some improvement. I hope you are getting complete care and that all of your doctors are monitoring you. As you know, one thing can effect the other so they need to all be on board and pro-active in helping you through this.

Make sure you rest…that included constant rest… Read more

@colleensteele Hi Colleen, you always amaze me. You will always find the funny bone – Cullen when little making a happy face with your brusing!

Thank you for asking. I have not been feeling very well: very tired, fatigued, weak and my bloating just is not going away. I think a lot of those issues are due to how low my iron levels and… Read more

Thank you @jenc this was very helpful. I will certainly talk with my doctor about Heme iron taken every other day in the AM. I do not know what HHT is – would you explain please. And thank Scott for his input.

Weekend coming up – maybe feet in the sand! And maybe Friday night Taco 🌮 night!! Hugs.

Hi @terry, you’re so right! Our caregivers find themselves thinking like you, too. I’m also guilty of this, too.

“As you well know sometimes the best solution to ones own ailments is to worry about someone else. I’m really good. “

We tend to keep busy with something to keep our minds from worrying about our issues. We worry about… Read more

Just wanted to share some information that @scott shared in an update about this topic. Scott has years of experience with PH and HHT. We are grateful for his shared knowledge and experiences.

He says, “Unfortunately this is an issue known well by many patients with HHT as over 50% are anemic and/or iron deficient. That number is… Read more

Hi Everyone,  Jeez Terry you’ve got a lot to deal with – chin up.  Hope the Boss is well too.   My Pacemaker will be replaced in next couple of months, as my battery runs down.  We’ll be driving to SA to see all the old friends and relatives that like me are starting to fall to bits.  A favourite part of the visit is with 2 old girlfriends… Read more

@jenc happy to hear things went well today. I remember not being very hungry after mine. I think it’s all the yucky stuff you have to drink beforehand. It takes a while for your body to be ready to consume anything else. That’s my theory anyway.

@terry as much as we like to discuss the positive please remember these forums are to help everyone through their difficult health journey. Please, never hesitate to update us about the good, the bad and the in-between. Post every day if you need and feel up to it!

You and your wife have been through so much! I’m sure worrying about each… Read more

Thank you @cdvol3gmail-com . Except for when I was pregnant and nursing I don’t think my iron deficiency is worrisome. My major symptom is bruising. On a light note…when Cullen was younger he thought it was funny to press his thumb on my arm or leg and see if the next day I would have a bruised smiley face. Sometimes it worked! It never… Read more

Hi again @colleensteele I was just thinking about your symptoms of iron deficiency. I have not had any brusing and have not had any infusions yet but I guess my levels are so low that looks like I will need them.

My Pulmonologist put me on iron supplements 325mg 3x/ day and it did help. I was reluctant to have infusions. My PCP had me taking… Read more

Hey sweet friend @jenc so glad to hear your procedures went well and now you can put those procedures on the back burner for 10 years. See, one thing about being 79 they tell you don’t worry about it, you’re done!

Sending you thoughts of “negative” for the biopsies on the polyps.

How are the rest of your labs holding up? Good positive wishes… Read more

Oh no, @terry, I hate to hear about the issues The Boss Lady has been having in recent months. Wow, that’s so frightening. How are you both doing now, Mate?

It sounds like it’s time to schedule and get your iron infusions. How many does your doctor usually order? That certainly will also affect our breathing.

Before I was diagnosed with PH,… Read more

Hi @colleensteele, I’m not a doctor, but in my case, my body wasn’t absorbing enough iron from foods and supplements to keep my anemia at a reasonable level. This is why my infusions were started.

My hematologist would order more detailed labs, like total iron, ferritin levels, etc. When it started decreasing again, he knew it was time… Read more

Hehe, @cdvol3gmail-com, I didn’t get any ice cream until this morning. The procedure took longer than I thought, and even with a tiny amount of light anesthesia, I was out when I got home most of the evening and then went to bed.

I ate half of a grilled cheese that Manny made me about 9 PM when I woke up to go to bed. For some reason, I… Read more

Hi @auntlizzie, I’m so sorry to hear about the need for a new pacemaker soon. I hope and pray it is a simple procedure and you can get home shortly after.

Boring? That’s not bad. That means you haven’t been running around to multiple appointments, right? What about your DIY projects? I can’t imagine you, our DIY Queen, boring. Hehe

Thanks… Read more

Hi Colleen @colleensteele I guess I find it difficult to believe that your doctor has not prescribed iron infusions since you have been diagnosed with iron deficiency anemia. Further you have been struggling with this since childhood.

I am certainly not a medical professional, but just googling the levels I have and look at what the Mayo… Read more

Thank you @cdvol3gmail-com @auntlizzie for updating us on your Iron deficiencies. When is it decided that you need infusions? Do they only suggest that when you have a condition like PH?

I’ve struggles with Iron deficiency anemia since childhood. It was so bad when I was pregnant I had to express my wishes of what I would want if the decision… Read more

Hi @colleensteele. Thank you zcolleen for you and Jen bringing up iron/PH again. I gad not seen this. My iron levels tanked – my iron saturation went down to 8 – not too good. My Pulmonologist had suggested nearly 2 years ago that I have iron infusions, guess I can no longer push that away.

How was your weekend at the shore with your… Read more

Thank you Jen @jenc for the link of iron and PH. Guess thar is why my Pulmonologist suggest I have the infusions nearly 2 years ago. My iron saturation level is down to 8. Not so good. Thanknyou again for the link.

Hope all your scoping went well today and you’re on you’re way home to cozy in and rest. Time for Tacos and milkshakes can come… Read more

Hi Jen and others,  Yes, I’m doing well these days – doctors keep saying I’m stable, so that keeps me happy.  Will need a new pacemaker shortly and am not looking forward to that, but everyone says this procedure is not as bad as when they put the first one in.   I’m a bit of a boring person these days.   If you’re reading this Terry – I’ll be… Read more

Hi @cdvol3gmail-com, this is another topic about iron levels and PH. As you may recall, several members struggle with this issue.

How are our Mates doing in SA, @auntlizzie and @terry? Your descriptions about the old, old days and Aunt Lizzie were hilarious. Thanks for brightening my very early Wednesday morning. Hehe.

I hope you all are… Read more

I had not seen this post, but it is also interesting. But this is an older article. If you give it a read, let me know your thoughts. Do you think iron infusions will help your low oxygen levels? Why or why not?

My hubby, Manny has diabetes, but he doesn’t have PH. His diabetes was considered borderline. But unfortunately, after we both had COVID the first time, his diabetes went crazy. He was off all medications and is now on two to control his blood sugar.

Do we have anyone here with diabetes and PH? I thought we had heard this from several;… Read more

Hi @kygon, I thought I’d tag you to give you a heads up on some comments regarding the new PH treatment in case you’re interested. My doctor has high hopes for it, even with severe cases.

Sending love, hugs, and extra prayers and light your way as Bryan gradually increases his Uptravi. ❤️

Hi @cdvol3gmail-com, and others, I asked my PH specialist, Dr.Channick, yesterday about his thoughts on sotatercept, and he said this sounds promising. He did mention; we won’t know the side effects as it’s too new and early.

But he did say if I needed something else in the future, we would discuss this as a potential treatment once… Read more

Oh, @cdvol3gmail-com, what an extraordinary vision of you sailing and swimming again! That would be incredible and exciting for you to look forward to early next year.

Can you believe we are almost halfway through 2022? Unbelievable! I’ll be crossing all I can and praying this is an option for you, my sweet PHriend.

Thanks for your… Read more

It really be great if this could work for me – get rid of the IV. go swimming and sailing again.

I am sending you positive vibes that you will be well enough next month to have an echo and the echo show improvement!! Please keep us posted good friend. Big HUG.

Hi @cdvol3gmail-com, no worries; I wanted to let you know us at PH News will be zoned in, awaiting the updates from the FDA on this one.

Yes, this treatment could benefit others when added to orals or others transition to it. Thanks for the reminder that, like all medications, it, too, will come with side effects.

I wouldn’t mind… Read more

Hi, cannot believe I missed this article. I was told about it by my Pulmonologist and saw anbarticle in The New England Medical Journal.

For folks on subQ and the IV Hickman line, this could really be a game changer plus sny PH patients on orals trying to balance th we sude effects. Of course these meds have their own side effects that may… Read more

Hi @cdvol3gmail-com, I wanted to tag you here. Before we moved, I also heard a talk about the positive results of sotatercept at a PH support group in Houston. The research nurses at the Houston PH Center also thought the benefits of this new treatment would be a favorable option for many of us in the PH community.

Incredibly, doctors… Read more

I wanted to share a recent column by fellow PHer and columnist Anna Jeter. Anna writes about things to consider before one agrees to participate in a clinical trial.

Clinical trials are essential for improved treatments and, eventually, a cure for PH. However, Anna reminds us to weigh the pros and cons and not to forget the personal impact… Read more

Hi @colleensteele, yes, this new diagnostic tool sounds promising. I would love to experience this versus an RHC. I would want to compare the findings of the two to see how well they align with numbers.

You can find out more from their website, including a picture. Ask, and you shall get my FWW, Hehe.

… Read more

@jenc it sounds like this has so much potential! I wonder where they go from here with the study and how soon we could possibly see it being used in hospitals. It’s wonderful that they ended up doubling the amount of people they originally planned on for the study but I’m guessing they need to develop the study further before the device… Read more

Sensydia, a new noninvasive device, may enable early detection of PH and heart failure. Recently our PH News team covered this story. The article reads,” Sensydia has completed a study to assess the effectiveness of its Cardiac Performance System (CPS) in identifying people at risk for PH and heart failure.”

 

This article is about a… Read more

Hi @valeriekv, I also struggle with proving I’m human at times. Those things are always very sensitive; however, most websites are using that now to keep spammers away. You’re not the only one who struggles with this, hehe.

I do think PH and metabolism are related. Because it’s vascular and in our cells, this would be connected to our… Read more

Hi, @colleensteele, Hi, @jenc!
Thank you for your kindness! It’s very nice.
We don’t have any insurance or similar things. If I buy an oxygen concentrator, then I will buy it at the store. Now I have a small aerosol can with oxygen for emergencies (when I have very low saturation).
Thank you for sharing your email addresses! This may be… Read more

Hi @valeriekv, I’m sorry about your continued struggles with your MS treatment and oxygen sats. As @colleensteele mentions, wouldn’t this be covered by your insurance or medicare? Either way, you will need an order from your medical team, correct?

Yes, you are right, Valerie everything is interconnected inside our bodies. For those physicians… Read more

Yes, thank you @jenc for sharing this informative article!

@valeriekv it’s so good to hear from you but I’m concerned to hear how much you are struggling with your health. Hopefully your doctor can request a stationary concentrator so that it will hopefully be covered or at least partially by insurance.

We are here for you through the ups… Read more

Hi, Jen!
A very interesting article. I think this information is intended for those people who got LH not at birth, but later. But this article proves again that everything is interconnected in the human body. Last year I visited many different doctors and only two of them believe that everything is interconnected in the body. Thank you for… Read more

Hey, y’all, I wanted to share a link that may be helpful for those interested in reading more about metabolic disorders and how they can relate to PH.

This article was shared in Advances in Pulmonary Hypertension in 2021. You can read more here.

@valeriekv, I haven’t seen any posts by post in some time. How are you doing?

Thanks, @colleensteele, for your thoughtful encouragement. I love working with clinical, too. Connecting someone with a rare disease to a potential clinical trial and knowing that this may improve their lives and all those around them brings joy to my heart.

I’ve found so many new passions since I started working with BioNews. After being… Read more

How many of you were aware that @jenc in addition to co-forum moderator and PH columnist, also assists the BioNews clinical team? She briefly mentions it the column she just shared but I assure you, she puts her all into that as she does here in the forums.

It’s such important work! Participation in clinical trials is also important and… Read more