rmlyonsfamily Posted November 29, 2011 Report Share Posted November 29, 2011 She started having trouble breathing over the weekend and complained of extreme fatigue. I told her it was probably her Dysautonomia and part of life now. Boy do I feel bad now....Took her to the doctor this morning after continued complaints. A chest xray revealed a good portion of her right lung was COLLAPSED!!! She was rushed to the hospital where they put a chest tube in the in the ED and we are now awaiting surgery in the morning for a permanent fix. Cardiology will be in to clear her before they will take her down to surgery.Any other POTs/PAFs have this happen for no apparent reason??? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 29, 2011 Report Share Posted November 29, 2011 I heard sometimes it is just a random event. My friends mother had it happen and never had any other health problems before or after it. I hope she gets better soon! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 29, 2011 Report Share Posted November 29, 2011 I'm so sorry to see this. She and you have been through so much. I hope she feels better soon.I'm not aware of any connection to dysautonomia. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted November 29, 2011 Report Share Posted November 29, 2011 { really big hugs for you and your family }I'm not up on this, but wanted to wish you all the best. Just in case you're feeling guilty, I told my daughter to stop pretending she couldn't breathand get ready for school. Within a few minutes I was calling 911. It was her first episode of anaphylaxis.And she reminded me of this for the longest time .. being a parent is never easy. Hang in there ... DPs. I wonder if this will give her better clues on what.s causing her dysautonomia. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 29, 2011 Report Share Posted November 29, 2011 I had my left lung pierced when they put my pacemaker in. What terrific pain! My best wishes that Kayber's surgery goes well and that's she's feeling better soon. Your family is in my prayers. Please keep us posted on how things go... Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 29, 2011 Report Share Posted November 29, 2011 How frightening- so sorry! I pray this is just a freak occurrence, but collapsed lungs can be associated with EDS. Once she is recovered, she needs to see a geneticist. I'm sending good thoughts and prayers-Julie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 29, 2011 Report Share Posted November 29, 2011 Wow, how random of a thing to happen! Please keep us updated on how she is. And, on what in the world they think caused this. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 29, 2011 Report Share Posted November 29, 2011 Collapsed lung is something that can happen with connective tissue disorders like EDS. (not that I'm saying that's what she has!)Praying that she recovers quickly!!! Quote Link to comment Share on other sites More sharing options...
lissy Posted November 29, 2011 Report Share Posted November 29, 2011 Sorry, and hope she gets well soon! I have had many little collapses never had to have a tube put in thank god. Mine are involving my menstrual cycle, so I was wondering if this could be a possibly in her case also? If so, there are some rare cases of endometeriosis that can cause pheumothoraxes.I'll be praying for her & your family. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted November 29, 2011 Report Share Posted November 29, 2011 I'm so sorry Kayleigh is in the hospital again!My husband had his lung collapse when he was 14. He was told it was because he was growing too fast, and his lungs got "stretched" and formed a bubble and it popped. He hasn't had anything like that happen again, so hopefully this will be an isolated event for Kayleigh.Don't feel bad, we are moms, we are not perfect. Kayleigh will be okay.Angelika Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 30, 2011 Report Share Posted November 30, 2011 My Prayer are with her and your family, if there is anyway i can help let me know!Has she had breathing issues in the past. My major POTS symptom is shortness of breath and it's very scary. I'm investigating Pulmonary Hypertension as a cause. Please make sure they check for that. What is your location, I'll look for a expert around your area that you can contact?Rich Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 30, 2011 Report Share Posted November 30, 2011 Hope the surgery went well today. So sorry you are all going thru this.My son's friend had a lung collapse from a spontaneous hole that appeared when he was about 15. Scary at the time but he seems to be fine now and no long term effects from it.Sending you all lots of hugs. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 30, 2011 Report Share Posted November 30, 2011 My Prayer are with her and your family, if there is anyway i can help let me know!Has she had breathing issues in the past. My major POTS symptom is shortness of breath and it's very scary. I'm investigating Pulmonary Hypertension as a cause. Please make sure they check for that. What is your location, I'll look for a expert around your area that you can contact?RichIf you look for pulmonary hypertension, make sure you get the heart cath. I had two ECHOS that showed I had it, but they told me that its not an accurate assesment. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted December 2, 2011 Author Report Share Posted December 2, 2011 Update on KayleighShe had surgery on Tuesday after the initial chest tube placement didn't work. She had some complications that landed her in the ICU for 24 hours, but she's back on the floor now. Unfortunately, so far they've not been able to get her off the vacuum seal. They've tried, but the xray a few hours later continues to show that the lung isn't inflating on it's own the way it should. Tomorrow, we'll try again. Not sure what happens from there.On the upside - she LOOKS a little better despite what her lung wants to do. She's talking in complete coherent sentences again, had her hair "fake washed" with a spray in shampoo, sat in a chair for 2 hours, and has on her own jammies today. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 2, 2011 Report Share Posted December 2, 2011 I'm glad she's starting to feel a little better. Thank you for the update. Hopefully, the next time we hear from you her lung will be inflated!!! Quote Link to comment Share on other sites More sharing options...
Rachel Posted December 2, 2011 Report Share Posted December 2, 2011 Oh, I'm so sorry. What a scary ordeal. I'm glad to hear that she is doing a little better today. I will be praying for Kayleigh, for wisdom for her doctors, and strength for you.Rachel Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted December 2, 2011 Report Share Posted December 2, 2011 Sending loving thoughts your way - hope this is all resolved soon. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted December 2, 2011 Author Report Share Posted December 2, 2011 Woo-Hoo! Chest tube is OUT! Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 2, 2011 Report Share Posted December 2, 2011 Yea!! That's great news. Hope she's felling better in the very near future! Quote Link to comment Share on other sites More sharing options...
jenglynn Posted December 2, 2011 Report Share Posted December 2, 2011 I am relieved to hear that she is improving but what a scary thing for your whole family to go through. Lots of hugs and prayers sent your way. Nothing is worse than watching our children suffer! Quote Link to comment Share on other sites More sharing options...
surfgirl14 Posted December 3, 2011 Report Share Posted December 3, 2011 Hey. I really hope Kayleigh gets better. I can understand what it is to be only a teenager suffering from it. Please tell her that she'll be in my prayers. It is not fun being in the hospital. From experience :/ But I hope that she will recovery quickly and fully.....best wishes for kayleigh, you , and the family. So sorry you guys are having to go through this. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted December 4, 2011 Author Report Share Posted December 4, 2011 She's home. We follow up with the surgeon in 2 weeks. She did develop an area of swelling on her lower back out of the blue. They xrayed it before we left and didn't see anything - so we are watching it VERY closely! Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 4, 2011 Report Share Posted December 4, 2011 Great news .. I'm sure she prefers being home .. Hugs ... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 4, 2011 Report Share Posted December 4, 2011 I think it takes awhile to be weaned off, don't worry we are all praying for speed recovery, she is a fighter! May God rush her to a speed recovery! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted December 5, 2011 Report Share Posted December 5, 2011 That's great news! What a fighter! Thank you God and I hope she has a complete and speedy recovery! Quote Link to comment Share on other sites More sharing options...
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