Sclero-What Adventures With Barb & Randine

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@gwendolyn402 16 күн бұрын

Congratulations 🎉

@sclerowhatadventures 13 күн бұрын

Thank you!

@lisac2422 16 күн бұрын

Aw Barb! Congratulations! Blessings and prayers my friend!

@sclerowhatadventures 13 күн бұрын

Thank you!

@julieschmidgall2629 26 күн бұрын

Your Mediapolis friends are continuing to pray for you!!

@sclerowhatadventures 25 күн бұрын

Thank You so much for your prayers! Much appreciated!

@ashleymanss5579 27 күн бұрын

Sorry to hear this. Stay strong and get well soon

@sclerowhatadventures 25 күн бұрын

Thank You so much!

@aquibashams Ай бұрын

Where?

@sclerowhatadventures Ай бұрын

This procedure was done in Ankeny, IA.

@coralknitsfiberarts571 Ай бұрын

We have just brought a new exhibition to the Lincoln City Cultural Center that is even better than before. Stop by if you can! It's there until October 13th

@sclerowhatadventures 25 күн бұрын

Oh how I wish I could visit! I have passed along your information to my niece that lives in Waldport. Thank You!

@wadehamlin Ай бұрын

Are you on crutches?

@sclerowhatadventures Ай бұрын

Yes, Barb was on crutches for days 0-1. Day 0 was no weight bearing at all on leg. Day 1 was just assisted with crutches. Barb started walking on leg without the crutches on Day 2.

@sclerowhatadventures Ай бұрын

I will be listed on September 1, 2024

@gregnielsen1645 Ай бұрын

Awesome glad you are officially on the list

@leefogle4383 2 ай бұрын

Congrats!! Awesome epic ride!

@sclerowhatadventures Ай бұрын

Thanks! It really was an epic ride!

@LisaElwell-nu5qi 2 ай бұрын

God is against organ 🫁 swapping, it kills your soul

@TheValueBikeAdvocate 2 ай бұрын

You Go!!

@sclerowhatadventures Ай бұрын

Thanks so much! Barb did 242 miles!

@ra_themaori6454 2 ай бұрын

safe travels

@sclerowhatadventures Ай бұрын

thank you! We did have safe travels for all of RAGBRAI!

@agorist-710 2 ай бұрын

Are yall from Melbourne??

@sclerowhatadventures Ай бұрын

No we are not from Melbourne. We are from Des Moines, Iowa.

@EnjoyJapan1 3 ай бұрын

💞Wow💛💛🤍💛💛

@sclerowhatadventures Ай бұрын

Thanks!

@danieltait8564 3 ай бұрын

I’m surprised you’re not taking any immunosuppressants medicines.

@sclerowhatadventures 3 ай бұрын

I did for a couple years, I was on mycophenolate. However, it gave me terrible GI side effects and with what is happening in my lungs (suspected pulmonary capillary hemangiomatosis) there is no benefit to immunosuppression. I do not have “typical” scleroderma pulmonary hypertension, as my heart is not really affected.

@danieltait8564 3 ай бұрын

@@sclerowhatadventures I did a bit of research on this and the PCH is most likely a complication of autoimmune damage caused by scleroderma rather than medication. In fact, some studies suggest that immunosuppressive therapy may have a role in treating PCH associated with autoimmune diseases. Mycophenolate is well known to cause gastrointestinal side effects. However, some others don’t. For instance, rituximab infusions have shown great promise in treating scleroderma without significant gastro side effects.

@sclerowhatadventures Ай бұрын

Thank you for sharing this information. Unfortunately, immunosuppression would not have been helpful for me. However, I do know many scleroderma patients that have benefited from mycophenolate and rituximab infusions.

@danieltait8564 3 ай бұрын

Thanks for sharing your medications Barb. For the supplements, I take nicotinamide riboside (Tru Niagen), pine bark extract (Enzogenol), and Vitamin D. There was mouse study done recently that found nicotinamide riboside good for scleroderma.

@sclerowhatadventures 3 ай бұрын

I hope you find benefits from your supplements. I have not heard of Nicotinamide Riboside. Thanks for sharing!

@danieltait8564 3 ай бұрын

@@sclerowhatadventures no problem :-) Thanks for making these daily videos of your scleroderma journey. You have a beautiful smile :) Your husband is lucky to have you!

@sclerowhatadventures Ай бұрын

I hope they are helpful. I will continue sharing my scleroderma and Double Lung Transplant journey as we progress.

@MakaWatches 4 ай бұрын

Me looking what people commented 💀👀

@LorriBeaver 4 ай бұрын

❤️🤗🥰

@MarianaMaza-en4ie 4 ай бұрын

❤

@eudaimelnia 5 ай бұрын

That rain hit hard! Glad mother nature won't keep you from doing you!

@sclerowhatadventures 5 ай бұрын

You got that right!

@CamiNovachek 5 ай бұрын

Thank you, Barb for taking us along on this journey with you. You are the bravest warrior I know. I love you and will continue praying for you during this journey.

@sclerowhatadventures 5 ай бұрын

Thank you so much! ❤️ Your prayers are priceless!

@sclerowhatadventures 5 ай бұрын

Thank You so much sister ❤

@SuperCookiejo 5 ай бұрын

Prayers for you and sending love!!

@TT-cs7xq 5 ай бұрын

Stay strong! We are with you!❤Aloha, 🌺

@mesgs1940 5 ай бұрын

I had a friend/cousin who had a lung transplant. She followed doctors orders to a T and did well. She had years she would not have had without the transplant. I thanked God for all those years.

@XXTERIA 5 ай бұрын

Hi. 😊

@XXTERIA Жыл бұрын

Hi 👋🥰

@XXTERIA Жыл бұрын

Hi how are you 👋🥰

@sclerowhatadventures Жыл бұрын

All good

@XXTERIA Жыл бұрын

Hello 😊

@karenfragale7268 Жыл бұрын

You are amazing

@karenfragale7268 Жыл бұрын

Love you two

@Mamachipmunk132 Жыл бұрын

My uncle thought he had pulmonary hypertension and thought he was doing for 7 years but then my mom finally nagged him about that his symptoms lined up exactly with effects she had from taking lisinopril. He was taking it. Stopped. No pulmonary hypertension. He's still well 3 years later. Not going to be everyone's story of course, but worth putting out there.

@sclerowhatadventures Жыл бұрын

Good info! Just because you think you have pulmonary hypertension, does NOT mean that you do. Please make sure you are going to a pulmonologist to verify that is actually what is going on. So happy to hear that he is doing well now.