Lukkychrm42 Posted November 26, 2006 Report Share Posted November 26, 2006 Hi everybody,I just wanted to let you know that an amazing young lady with post-viral dysautonomia and systemic mastocytosis passed away last Tuesday. She was on this board as CaitlinRose, but she didn't post very long as she got quite ill with the masto. I knew her through another dysaut. group, and I'm still sort of digesting the news myself. I'm still sending lots of love and hugs up to Connecticut to her family. Quote Link to comment Share on other sites More sharing options...
nikigrl8883 Posted November 26, 2006 Report Share Posted November 26, 2006 thats horrible.... how old was she? did she die from dysautomia or somthing else with it...do people die from masto.....? i didnt know that ....im very sorry for her family too Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 26, 2006 Report Share Posted November 26, 2006 i am so sorry to hear that. how sad. i hope her family is being comforted. which also reminds me of jan from michigan. thoughts and prayers being sent from me to both families today. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 26, 2006 Report Share Posted November 26, 2006 So so sorry to read this sad news. She was very young. I just looked back at all of her posts. Apparently she had post-viral POTS, along with the mastocytosis, the POTS was diagnosed as "progressive"--which is rare. My thoughts are with her and her family.Katherine Quote Link to comment Share on other sites More sharing options...
nikigrl8883 Posted November 26, 2006 Report Share Posted November 26, 2006 i hope i dont sound rude to ask this on this post but i figured i mine as well instead of starting a whole other post....i thought people didnt die from pots,,,,ive never heard of progressive pots whats that? how do doctors know if you have that.....this stuff is quite nerve wracking Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 26, 2006 Report Share Posted November 26, 2006 I am so sad to read this news. Thanks for the update. Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 26, 2006 Report Share Posted November 26, 2006 i just looked up caitlyn's qoute under her member name. i really think it is moving and would like to simply put it out there for all to see.... very powerful. i believe caitlyn is doing what she loved to do most here in this life (under her signature), sing worship in church. she is in her heaven home church today, i believe doing just that, with no pain, no illness, and nothing holding her back.so for you, caitlyn :"When you come to the edge of all you know, and you are about to step off into the darkness, Faith is believing one of two things will happen...There will be something solid to stand on...or you will learn to fly "believing you are standing solid today sweetheart, in heaven.may your family be comforted in knowing they will see you again, but in the meantime, may the winds from above catch hold of each note you're singing from the heavens, and fall a comfort and peace in the ears of all your loved ones, bringing them assurance that you are home - safe and sound. Quote Link to comment Share on other sites More sharing options...
Laura Posted November 26, 2006 Report Share Posted November 26, 2006 I'm so sorry to hear that. That is very sad news. I remember CaitlinRose's posts as very sweet and positive. Sending much comfort out to her family and friends. Thank-you Megan for sharing this news as I'm sure it is difficult for you. xo Laura. Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 26, 2006 Report Share Posted November 26, 2006 Hi,I just read her post. She was just 22 years old. So young! She was such a sweatheart. What a tragedy! Quote Link to comment Share on other sites More sharing options...
cardiactec Posted November 26, 2006 Report Share Posted November 26, 2006 nikigrl,i'm sure there must have been other factors. caitlyn had a post viral case of pots. usually people with post viral pots have the best chance at complete recovery. i know she had mastocytosis but i dont know enough about mastocytosis to really comment on that, it's severity, mortality rate, etc....... Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 26, 2006 Report Share Posted November 26, 2006 So very sorry to hear of this news Prayers to her family during this time. Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted November 26, 2006 Report Share Posted November 26, 2006 That's aweful news to hear...Makes me count my blessings... Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 26, 2006 Report Share Posted November 26, 2006 POTS, itself is NOT fatal. If you read carefully, she didn't die from POTS, but rather mastocytosis, which is when the body's allergic response goes haywire. I feel so sad for Caitlin and for her family that she left behind.Nina Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted November 26, 2006 Author Report Share Posted November 26, 2006 Hi,Thanks for clarifying that Nina. In addition to dysaut, she had small and large fiber polyneuropathy, and she was diagnosed with the masto less than a year ago. She became allergic to the plastic in her feeding tube almost a year ago, and allergic to all the medicines they tried to control the masto and everything else with. She was very sick for a long time, and she got a new oncologist for the masto in October, but they were unsuccessful in finding medications that could help. Additionally, she was unable to get adequate nutrition, and it got to the point that she was safer at home than in the hospital.As you all can see, she was an incredible person, and always optimistic and inspiring. She was truly beautiful inside and out. Quote Link to comment Share on other sites More sharing options...
persephone Posted November 26, 2006 Report Share Posted November 26, 2006 Thanks for sharing, Megan. I'm sorry to hear this news. It must be awful for everyone who knew her- you included. I'm sending thoughts to you and her family. Keep talking to us all about her if it makes you feel better. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 26, 2006 Report Share Posted November 26, 2006 thanks so much for letting us know megan.my heart & prayers most certainly go out to caitlin's family & friends. ~melissa Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 26, 2006 Report Share Posted November 26, 2006 Megan, thanks for keeping us informed.I hope that you will be able to pass our collective condolences on to the family.Nina Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted November 26, 2006 Report Share Posted November 26, 2006 My heart goes out to her family and friends. Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 26, 2006 Report Share Posted November 26, 2006 How heart breaking- she sounds like she was an incredibly strong and positive person. Peace and love to her family.Carmen Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted November 27, 2006 Report Share Posted November 27, 2006 may God bless her and her family and friends.dionna Quote Link to comment Share on other sites More sharing options...
morgan617 Posted November 27, 2006 Report Share Posted November 27, 2006 I didn't know caitlin, but it sounds as though she was a beautiful spirit. My thoughts and prayers are with her family....morgan Quote Link to comment Share on other sites More sharing options...
DancingLight Posted November 27, 2006 Report Share Posted November 27, 2006 Megan,Thank you for sharing with us. I did not know Caitlin either, but like Morgan said, it sounds like she had an amazing spirit.It breaks my heart to hear of her death at such a young age...Hugs to you, as I know you are grieving. Also, if you know of a way to contact her family, please let them know how many people are holding them in their hearts...Emily Quote Link to comment Share on other sites More sharing options...
Tessa Posted November 27, 2006 Report Share Posted November 27, 2006 I have not had the pleasure to know and share some postings with her, I am very sorry about this. It is a sad news for all.My heart and prayers are with her, her family and friends.Love,Tessa Quote Link to comment Share on other sites More sharing options...
Rachel Posted November 27, 2006 Report Share Posted November 27, 2006 Thanks for letting us know, Megan.Caitlin will me missed and remembered by many. My thoughts and prayers are with her family. Rachel Quote Link to comment Share on other sites More sharing options...
futurehope Posted November 27, 2006 Report Share Posted November 27, 2006 I appreciate you sharing this with us, Megan;you must have had some sort of relationship with Caitlinrose.What a blessing to have had such a lovely, caring person to grace our forum!Rest in peace, Caitlinrose! Quote Link to comment Share on other sites More sharing options...
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