Tuesday, May 19, 2015

Still Going Strong!!

Thankfully, we are still bleed free since Thursday at 2:30AM!! We are so thankful that this is the case!! We now are getting back to his CF tune-up, and going to see what happens regarding the bleeding. They can't tell us why it stopped on its own, and they can't tell us if it maybe just healed on its own. They also can't make a guess as to when/if the bleeding will start again....5 days or 5 years. So here our current plan of action:

- Ease back into treatments - Today Ronnie will start his vest, on a very light setting. In a couple days, he will start inhaled antibiotics (which antibiotic is still TBD), and then Pulmozyme (that will be last added back since literature does note some hemoptysis with it).
- Hypertension medication - He doesn't have hypertension, but some other docs they consulted said that they have found it can help with the bleeding by lowering the heart rate. So we are giving it a try.
- Switch from Tranexamic Acid to Amicar Syrup - Tranexamic Acid helps clot your blood, so he's been on it. But it's not a great longterm option. So they are going to switch him from that to Amicar Syrup, which apparently works by a similar mechanism, but isn't as potent.
- 2 weeks of IV antibiotics - One of the teams Ronnie's team consulted with said this is their standard treatment post-hemoptysis. So they are going with that.
- Hemoptysis Guru review scans - We are having a Dr. from the University of Washington review Ronnie's IR scans, as well as their IR team, to see if there's anything that was missed or something they think they could do, proactively. This was the team recommended to us by our CF team after they asked around and researched to find the best to deal with this specific situation.

Right now we are working on managing lung pain, building strength, and working through feeling like a ticking time bomb. We are all doing well. Just taking each day as it comes! We are eager to get back to normal tune-up mode and then normal life mode. We inch closer every day, so we are thankful for progress. Please join us in praying for a continued lack of bleeding, strength that grows exponentially each day, increased appetite, and daily progress!

Comments (5)

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Fingers crossed for you the bleeding has now stopped and you can start building up your strength. Keep fighting the good fight Ronnie!
Ronnie! Listen to me, I've been embolized 4-5 times and I have discovered that in my particular hospital the air is super dry. My hemoptysis usually calms down and heals much much faster if I bring my own humidifier and put it on full blast in my room. You should consider this, the best one that has the most output is the Crane Humidifier. You can get it off Amazon for around $45. Also I would suggest buying a humidity tester to monitor the humidity in the room. I try to get the humidity to around 60-70% if i'm having hemoptysis. I do know that the hospitals usually circulate the air so sometimes it's hard to get the humidity above 55%. But any bit helps. Usually my hospital air humidity is around 30% if I don't use my humidifier.
I'm sure you can relate, but dry air is hard on your airways and induces hemoptysis. And it makes it extremely hard on your airways to heal with dry air. Remember, normal lungs are nicely coated with thin mucus all throughout, but our lungs don't have this. We have globs of thick sticky mucus in some parts, while other parts are not protected with a coating, this is why breathing fumes and other things are so much harder on cf lungs. Anyways I hope this helps, God bless!
If the bleeding continues, you may be able to request a "high output oxygen" machine be brought to your room, those machines put out great amounts of humidity along with the oxygen, you can adjust the levels and it also warms the air to body temperature before it reaches your nose. Maybe consider requesting this if it gets bad again.

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