Will you share your medical journey this month for RDD?

[jen-cueva]

Hey, y’all, has anyone had any appointments or milestones you want to share with us? Do you have other appointments since we are halfway through the month?

Also, I wanted to update y’all on @Colleen. Last night, she updated me that she is still in WA trying to get her house taken care of. She says, “<i data-stringify-type=”italic” style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>I honestly feel like I’ve been in my little world lately trying to work things out. I’m waiting on insurance to approve the work and cost of everything so the wall can go back up and the new furnace and water heater can be placed. Fingers crossed, I’ll be back in NJ before March and back to work!

Also, she worries about Cullen and both of her parents. She says,<i data-stringify-type=”italic”> “My parents aren’t doing well either. Both have dementia and Cullen has his hands full caring for them while I’m gone.<i data-stringify-type=”italic”>I miss all of you so much and I can’t believe how patient you have all been as I try to find my way back to normal.”

Let’s continue to send Colleen our love and support, as well as positive thoughts and prayers. She has so much to carry on her shoulders. While we worry about and miss her, she doesn’t need to worry about the forums. We will be here for you, my friend, and FWW; You are loved and cared for by so many. 🤗

[jen-cueva]

Here’s an update for the month from @Vanessa Vaile. Unfortunately, she had trouble posting, so she messaged me. I am happy to update her. Below is her update.

“I have a National Jewish Health appointment this month for a 6MW, another test — probably pulmonary function, and a consult with the specialist I have not seen in person in over 2 years. Still no word from UC Health about CTEPH/CTED. I’m feeling agnostic about both and keeping expectations realistic. Stressing does my heart rate no favors.

Thanks for the ”invisible battle” article. I’d completely forgotten about Rare Disease Day at the end of the month.

<b style=”font-style: italic;”>I should have checked in sooner but haven’t been getting email notices to remind me Not finding a sign up for email updates suggests the feature has been discontinued.”

Vanessa, I’ll check with our tech team, and if there are any changes, I’ll let you know, but the email subscriber should still be working. Thanks for your patience. Please keep us updated as you complete the appointments this month. You make an important, challenging, yet needed reminder by keeping your expectations real. Stress and PH don’t play well together, so true, my PHriend!

[Carol Volckmann]

First, my heart goes out to Colleen and I pray that all the issues with the insurance company are resolved and she will be able to get back to NJ and Cullen and her parents. Her plate is so full right now I wish we could help in some way. We love you Colleen, please remember to take care of yourself – that is so important!

Rare Disease Day – I thought that February was going to be pretty wide open after hospital stay and transfusion end of January. No one can figure out why I was loosing blood – PH or Scleroderma or ? Well, February turned out more test, labs, endoscopy, Rheumatologist, Gastroenterologist still red blood cells still way down then all of a sudden, breathing became really bad, weakness to the point I really could not do anything. Had a Nc-99 test where they take your own blood, nuke it put it back in and try to trace where the bleed is. No luck. Next lab showed I was in heart failure. Taking more Lasix will start iron infusions next week. Have reached out to my Pulmonologist and Cardiologist. Hopefully I will have some answers soon. Up until now my PAH has been stable for years – so this is a bit scary.

[jen-cueva]

Oh, my sweet PHriend @Carol Volckmann, hearing that you’re still feeling awful without any clear answers about your blood loss is tough. And now, heart failure on top of that? Surprisingly, they missed that during your ER and hospital visit.

Fingers crossed that your PH team reaches out today. Please, let us know how we can support you during this scary time. We’re here for you, sending extra gentle hugs, love, and prayers, hoping your team can unravel this mystery. And remember, keep an eye on the Lasix – we don’t want you dehydrated if it works too quickly.

It’s incredibly generous of you to encourage others even as you navigate these challenges.

Like you, I had hoped this year would mean fewer doctor’s visits, but our health has other plans. Taking care of ourselves must be our top priority.

[Jean]

I eat a Mediterranean diet. Lots of vegetables and fruits, lean protein and moderate carbs. Extremely limited added salt. Mrs Dash makes amazing seasonings that are either zero or limited sodium. You’ll love them and won’t miss salt. I also eat very little sugary food though allow myself a treat occasionally. Hope this helps.

[jen-cueva]

Hi @Jean, the Mediterranean diet is one I would love. However, the things I enjoy from that diet, like feta and olives, are loaded with sodium. But we usually try to eat lean proteins, veggies, and whole grains. Sweets, well, that’s a bad habit that became worse since my PH diagnosis.

Ms. Dash and also Flavor God have so many wonderful seasonings. I like the Flavor God ones much better than Ms. Dash. Have you tried those yet? Thanks for sharing.

[Carol Volckmann]

Thank you sweet friend @jen-cueva . You always can make me smile hearing your thoughtful and loving support 💕.

Pretty much my team is trying to figure out why my blood levels are so low. I am going to have some iron infusions. Pulmonologist does not think my weakness, fatigue nor shortness of breath if PAH caused. Cardiologist may put me on another med, but wants to wait to see if the infusions helps to get my red cell counts up and stable.

The Lasix has helped a little and thank you for reminding me not to become dehydrated. I am drinking a lot of water and try and remember to take the additional 40mg late morning or early afternoon so I won’t have to get up several times at night.

Oh, and thank you for the Flavor of God, I’ll try it – I do miss salt and still use it when I should not 🥵.

Warm hugs and extra positive vibes for you to have on your plate!,

🤗❤️❤️😊

Carol

[jen-cueva]

Hi, @Carol Volckmann . How are you this week? Are you also taking potassium with the Lasix? What new medication did your Cardiologist start? Have you noticed any improvements?

My apologies for the late response. I have been in the hospital. But grateful to be home and recovering and back to my sweet forum members. I’ve missed y’all!

Please let us know how things are going for you this week. I hope and pray it’s much better with the extra Lasix, water, and new med. Extra hugs and love are coming your way from SD!🤗