Lungs
IV infusion (SOLUMEDROL)
Hello everyone, I am new to this website so here is a little about me. I am 35 years old. I was diagnose with idiopathic pulmonary fibrosis around June 2021. Save to say my lungs did not least that long. I ended up getting a double lung transplant on 4/21/2022! I have had 2 bronchoscopies and 1 procedure on upper left lung with a balloon to open up an airway of the new lungs. The surgeon said was narrow when they did the first bronchoscopy back in June. I am also showing A1 rejection. Per the surgeon notes it's very little. They started me on prednisone taper for the 1st bronchoscopy back in June. On June 10th was the bronchoscopy balloon dilatation. It worked right away opened it up 75% from where it was at (I do not remember where it was at). I did the 2nd bronchoscopy on June 23rd. The upper left airway went back to the starting point. The surgeon told my wife that once they pass the "narrow airway", all the other airways on the left side are OPEN. The bronchoscopy biopsy on June 23rd showed A1 rejection again. So that brings me to today, I did the 1st of 3 IV infusion (solumedrol).
My question about the IV infusion. I guess I would like to hear everyone and anyone story if they have done it. The good, The bad, The okay. I have another bronchoscopy set for the 21st of this month. Just want to wrap my head around the news the doctor gives me. What steps to look out for. MAYBE what questions I can ask.
Thank you for letting me on this website and group. My wife and I have no idea what to expect and really what questions to ask.
I am 2 months and 15 days post transplant and I know in my soul I have a long life in front of me!
Transplant was done at CHI ST. LUKE'S BAYLOR in Houston Texas
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Transplant Patient
Congrats on being #blessed with the #giftoflife, @Daniel4212022
So sorry to hear about the A1 rejection issue, hopefully the infusions will rectify the situation.
Life after transplant, can definitely be full of ups / downs. The important thing is to try to stay positive through it all, and be your own advocate - like you are being!
While no two transplant journeys are identical, there are similarities & you're doing the right thing by asking questions on platforms like this.
Take care, best of luck & please keep asking questions! both, on social platforms like this as well as to your transplant team members. No question is too petty/silly/small to ask!
Hey, @Daniel4212022. Congrats on the new lungs and the next phase of life!
My experience with solumedrol wasn't too awful. I didn't have immediate side effects. I did have significant body swelling and insomnia for the next 2 weeks or so. Each person can react differently to the infusions. Dosage/length of infusion time also a factor. I've been on 80 mg tapers. You might already have had solumedrol immediately post-transplant and maybe not have known; could ask your team. I know some who have had unwanted temporary mood swings as a result. I've also had A1 rejection within the 1st year which my transplant pulmonologists have said is fairly common for lungs.
I think it helps mentally to know what comes next so you're prepared and not surprised. The unknown is often what is unsettling. For instance, you could ask what the next step is if the bronchial dilation doesn't work or what the treatment would be for you if the A1 progresses to A2 (when I was in the hospital, I was given a small card with each severity and likely treatments).
The infusion itself usually took me about an hour. Hope it goes well for you. Keep us posted!