What is on your medical calendar for May?

[Rivegauche610]

Sotatercept, I hope.

[Colleen]

@Rivegauche610 I’m keeping my fingers crossed for you, and I hope you will keep us updated!

[jen-cueva]

Hi, @Rivegauche610 , when will you find out if you will start sotatercept? Any updates you want to share?

[Rivegauche610]

Waiting for VA approval.

[Debra]

I am scheduled for umbilical hernia repair on May 15th. I was cleared for surgery by my Pulmonologist.

[Colleen]

@Debra Gonzales I remember you mentioning this, and it is good to hear it was cleared. How are you feeling about it? Hopefully, you will feel a lot better after recovery. I will keep you in my thoughts and prayers on the 15th! We will be anxious to hear an update when you feel up to it.

[jen-cueva]

Hi @Debra Gonzales , thinking of you as you prepare for your surgery this week. Are you ready to get in and have this done, or are you anxious about any part of your procedure? Please update us when you can- hugs and prayers are with you, my PHriend!

[Vicky Olsen]

I am seeing my cardiologist on May 22 after his vacation. I had a cardiac mri early April and my ejection fraction had dropped from 35 to 30. Since then, I went into atrial flutter (on a cruise ship) and had to be cardioverted. I have mild/moderate ph. I am not sure what he will recommend now. He had said before that I may need a mitral valve replacement. I had a mitral valve repair in 2013. I am 71.

Meds: Lasix, Entresto, Dapagliflozin, Lancora, Apixaban, Bisoprolol, Spironolactone

Is there a ph med that could help to increase my ejection fraction? Any recommendations? Thank you. ❤️

[Colleen]

@Vicky Olsen I don’t know if your low ejection fraction is considered heart failure? My son was placed on IV Milrinone which helped him considerably but it was just to keep him stable enough until he received a heart and double-lung transplant. I’m not saying you are this severe but that Milrinone, if your doctor mentions it, did help my son. He was in 8th grade at the time and was able to attend school with both a pump that administered Flolan and a pump that administered Milrinone.

Hopefully other members will jump in with advice. Please keep us updated. My thoughts are with you!

[Vicky Olsen]

Thanks Colleen. Yes I am in heart failure. – And on all the meds for it. I am searching for something more to possibly help me. I will do some research on milrinone and discuss it with my Dr.

[Colleen]

@Vicky Olsen If IV milrinone is considered, please feel free to ask me any questions or concerns you might have. I would be happy to help.

[jen-cueva]

Hi @Vicky Olsen , I’m so sorry you have been experiencing heart complications and also a decrease in ejection fraction. How scary that this occurred while you were on a cruise ship!

To answer your question, several PH treatments can increase ejection fraction. This can often improve ejection fraction because they work to decrease the load our hearts need to do. I would be interested in which treatment your cardiologist thinks would best benefit you.

Gentle hugs, love and prayers are with you, dear PHriend!

[Terese]

Hope all is well with all PH friends, and Happy BD to Jen and Colleen! I have begun my 6-mo medical marathon. Passed my 6MW with 99%! and no bloodwork problems. Still have Cardiologist, hematologist, allergist, opthamologist, and my PCP this month. Not anticipating any difficulties.

[Colleen]

@Terese Tuohey 99%! That’s amazing! It hints at all the positive results you will receive for everything else!

Thank you for the birthday wishes but our b-days are in October! Today I am celebrating 6 years with BioNews! Time flies when you work with good people!

[jen-cueva]

Hi @Terese Tuohey , wow, what an exceptional score on your 6MW! You are doing such a fantastic job with your appointments, my PHriend! Please keep us posted on how you are doing and what’s new.

And thanks for the early birthday wishes, October will be here before we know it! Right?

[Terese]

Colleen, Any reason is a good reason for a celebration! Enjoy your anniversary date! We’re glad to have you here!

[Colleen]

@Terese Tuohey Thank you so much! 😊

[carol-volckmann]

Wow @Colleen 6 years with BioNews! We are so blessed having your support, your prayers, your love and for sharing your own journey – the ups and downs and everything in-between.<div>

Thank you for your birthday 🎂 wishes. A beautiful, sunny day. Dick always makes it special and fun. And Cloud, always the Clown.

My medical calendar is already filling up. More Dermatology appointments, ultra sounds, bone scan showed osteoporosis is my left hip, labs – all the normal stuff. Aside from all of that, I am feeling a bit stronger and ready for many more birthdays. Eighty one will be a good year!

Thank you again sweet friend. Sending you a warm hug 🤗❤️

</div>

[Colleen]

@carol-volckmann Thank you so much for sharing that adorable picture! Dogs have a way of bringing out our best, most genuine smiles!

When you attend medical appointments do you ever treat yourself to something on the way home? Cullen and I will often stop at Starbucks or stop for lunch if we feel up to it. It’s kind of the adult version of a sticker or a sucker for getting through an appointment. 🤣

[jen-cueva]

Hi, @Colleen and @carol-volckmann I also try to “reward” myself when attending appointments. It can be on the way, stopping through the SBUX drive-thru. When KK comes along, or my driver as she says, we often have lunch afterwards, if I am not too short on spoons. I relate, Carol!

Colleen, I LOVE how you refer to these rewards like an adult version of a sticker or lollipop! 😂

[carol-volckmann]

@Colleen and @jen-cueva lover your remarks – lollipops 🍭, Starbucks treat and I run out of spoons! Dick told me just put all the used spoons in the dishwasher … and we will be all set.

You both are so great always looking for the positive – I am so blessed meeting you both on this forum. I cannot tell you how much you help me get through some days! Love and hugs kind, generous women! 💖

[Colleen]

@jen-cueva We are all kids at heart and deserve our rewards too!

[jen-cueva]

Again, Happy Birthday “‘season” to you, sweet PHriend, @carol-volckmann ! I am excited to be along this incredible journey with you! Who knows what you and Dick will be up to in year 81! Let’s not forget Mr. Cloud! He is so cute- always looks like he’s full of love!🎉

We are all so fortunate to be walking alongside you, thanks for your kind heart and sharing such a beautiful picture of your two guys!🤗

[carol-volckmann]

@Colleen I love how you and Cullen would treat yourselves to lunch or Starbucks after Cullen’s appointments – an extra sucker😃. That never occurred to me – I just want to get home!

Medical appointments take so much of my energy (too many spoons). Having to concentrate on all the details, trying remember all the questions I wanted to ask … just want to go home!

Now, you have me thinking 🤔 maybe I need to look into treating myself – ourselves – ice cream 🍦 😋 would be good. Thank you Collen, you are an inspiration! Lots of love ❤️ coming your way.

[Colleen]

@carol-volckmann I completely understand; I want to get home after an appointment. Cullen and I always ask each other what we want to do after an appointment. There are plenty of time when either one or both of us just want to go home.

[jen-cueva]

Hey PHriends! It’s wonderful to be back!

First, a huge thanks to our lovely moderator, @Colleen for holding down the forums while I’ve been MIA because of my cast! She has been managing all on her plate while ensuring you all feel supported. 💜

Forum members, I can’t express how important it is to know that you can keep the conversation going! You are all so supportive of each other and open to leaning on others when you need more support.🤗

My most exciting appointment this month was to see my ortho and have my cast removed on Friday! She wants me to wear the brace until we do X-rays again in a few weeks.

Happy 6th anniversary, Colleen! We are so fortunate to have you as a moderator and friend. There are no measurements to show how many people you’ve impacted since joining Bionews/PH News! You are loved and appreciated!🎉

I love the beautiful flowers you shared on this month’s post, Colleen!

[Colleen]

@jen-cueva Welcome back! Did you treat yourself to celebrate the cast removal day? How is it feeling since getting it off? Now, don’t go jumping back into routine. Take your time and give your wrist a chance to collect its spoons!

[Colleen]

@carol-volckmann “Put all the used spoons in the dishwasher.” I wish I had that quote while writing my column about spoon theory and circadian rhythm! With Dick’s permission I would have used it! It’s so funny!

[carol-volckmann]

Anything I write or Dick writes, you always have our permission! He has always made me laugh 😃!