My name is Kat and i have Adult Cystic Fibrosis and Marfans Syndrome. I am a single parent of 2 children, Tristan is 12 and has a heart murmur, jasmine is 3 and also has a heart murmur, and also has autism.
nice to meet you Kat. I have 3 kids. Alisa is 4 1/2, Kevin Jr is 2 and Abbey will be 1 on Oct 22. How bad is your CF? Do they think your kids have marfans too? Is your heart ok? How old were you when you had your kids? A big factor in me having mine when I did was just that I physically could do it. I was so afraid of not being able to do it later. Anyway hope to talk to you more soon.
Re: G'day
I hope i am using this ok, i am still a tad confused. :-)
I got CF after the birth of my daughter in 1999. Same with Marfans. I have 2 different diseases affecting one lung. At the moment my lungs are currently on 60%. If they drop to 30% it will be a lung transplant style.
Regarding Marfans syndrome, Tristan has to get tested after puberty, and jasmine will eventually be done as well, though the Dr said she will be 6'4 in adulthood. Both have heart murmurs and have to take it easy. I have no problem with my heart what so ever.
I was 21 when i had tristan, at 31.4 weeks, weighing 3'10, and 32 when i had Jasmine, at 27.4 weeks, weighing 2'14.
Due to Marfans and CF , i am unable to have anymore children. It doesnt upset me as i plan on having no more anyway. The only thing i hope, if that my kids havent got both diseases. It will kill me inside.
I have heard of one of your conditions, the one beginning with F, as i used to chat to another net user with it, named jill, but i lost her addie. Whats the other 2 that you described,as i have never heard of them b4.
Have you children got what you got?
I was diagnosed first with Chronic Fatigue Syndrome. Later I developed CIP, chronic intestinal pseudo obstruction. Thats a problem where my stomach and intestines dont empty normally. I had to be iv fed for 7 years but its a bit better now. I had a surgery that made it almost impossible for me to throw up so at least I can eat now. Dysautonomia is when the autonomic nervous systen is screwed up. So I cant regulate my heart rate, blood pressure, temperature etc well. I also have an immune deffiency and I had surgery for an Arnold Chiari Malformation. There is info about all of it on my web page. Just click the link after my name at the end of this post.
Did your kids have any problems from being preemies? How long were they in the hospital? Are they normal size now, and when did they catch up?
malilibear
Unregistered User
(10/11/02 7:10 pm) Reply
Hi everyone!
I am almost 25 yrs old and have had multiple chronic health problems since the age of 14, which are possibly a result of a mitochondrial disorder. I primarily have autonomic nervous system dysfunction and GI dysmotility. I have been on TPN (IV nutrition) since the age of 16. I also have a g and j tube.
I graduated from college with my RN/BSN in May of 2001 and took grad school classes at Univ of Penn this past year to obtain my nurse practitioner's degree. I am half way there, but need to get a year's worth of work experience as an RN before I can continue.
I want to work in peds and am now looking for jobs that I may be able to handle. Many jobs require full time orientations though, which is too much for me right now.
Becki....I have seen you on another board, I think, and if I am thinking of the right person....you are a peds nurse, right?
How did you get through the orientation part successfully? I am having a hard time finding enough energy to even think about this. It is one thing to go to classes and feel awful b/c I am only responsible for myself, but as a nurse, I am watching over other people and feel like I could be compromising their health, if I am not feeling well myself. How were you/anyone else able to handle this? Any suggestions?
It's good to see everyone posting!
Malisa
rmooreny Registered User
Posts: 1
(10/15/02 7:49 am) Reply
Re: Hi everyone!
Hi everyone
Nice to meet you all. I'm Rebecca. I've been friends with Sharon and Heather for a number of years. I'm glad this forum is open.
I live in suburban New York, in the U.S. I have CFS and a bunch of related conditions. Sometime in the past few years I caught Lyme, so things have been complicated.
I read your homepage, sorry for the lateness, but i have been up most nights, with a night cough. My eyeballs are virtually hangin out.
Some of the things in your homepage i can relate to. When i was a child i was sexually abused and in my young years to teens, i used to slice my arm with a razor blade. Tried to kill myself by slashing and taking an overdose. I thought i was the only one who used to " do self injuries". I can understand where you were coming from in. Another thing i can related to is that we both got ill after the birth of the last sibling.
Mustve been a nightmare getting IV feed for 7 months. I cant imagine it.
Jasmine is autisic now from being a premmie, but which the special classes and schooling, hopefully she can go to a normal school. It more spetrum austism, 6 months behind in developement.
Tristan was in hospital for 8 weeks and jasmine was in there for about 3 months.
You kids are adorable.
Re: G'day
Kat,
I have learned a lot about how common self injury is as a way of coping. It has really amazed me how many people have dealt with it. I was lucky to find a good hospital and partial hospital program that helped me soooo much. They really taught me how to get me stuff out without cutting. I don't know if the change in how I express myself shows or not but it feels so different to be able to begin to have a connection wih my emotions again.
My kids don't seem to have any effects from being preemies. Kevins hypoglycemia can be an issue. I have started putting him to be with a cup of Nuvim, which is a drink that has soy protein and sugar in it. I know it's bad for his teeth. I'll have to be extra good about brushing them, but last night was the first night in a long time that he wasnt screaming hysterically to get up in the middle of the night. Abbey and Kev are both small for their age. Alisa has caught up and is normal size now.
Malisa knows all about what it's like to be iv fed for years. We went thru adjusting to that at the same time. It really does become routine after a while. The iv pumps and stuff are portable and go in a backpack so it is easy to go out and do whatever you feel like doing when you are hooked up to the iv.
How is your cough? Is there anything that can make it better so that you can get some rest?
Talk to you soon. I hope you are feeling better.
~sharon
www.hometown.aol.com/SharonW1124/index.html
nysnowi Registered User
Posts: 3
(11/22/02 10:25 pm) Reply
Re: G'day
I thought i'd add myself to this thread! My name is Danielle (aka snowi, hence the Username). I am 19 and live on Long Island, New York (US). I live at home with my parents as I am unable to support and care for myself at this time. I am hoping to get back to uni and become a pharmacist (i used to be a pharmacy technician). Now I stay home and care for my puppy.
I have autoimmune disease. This is a broad term to use but some of it has yet to be given a name. I have Hashimoto's Thyroiditis (hypothyroidism), Anticardiolipin nNtibody (or Hughes) Syndrome and the chief at the hospital I've been going to thinks I have SLE-Lupus. I also suffer with Raynaud's Syndrome, Major Depresive Disorder, Panic Disorder, TMJ, severe joint and muscle pain, fevers, etc. I am getting over my second case of Mononucleosis. My first was in March. I was fatigued and in pain years before the mono hit me and the mono has just exacerbated my symptoms. I am seeing an infectious disease specialist about the recurring mononucelosis.
Ok first off since we have a bunch of dog people here I have to ask...what kind of puppy?...how old?...whats its name?
I am in NJ...so not too far away. It is so hard to have an illness that is confusing to docs. I am the same way. I have a lot of problems but no one is totally sure how they are all connected. So I try to treat and manage each piece of the puzzle without knowing how the pieces all fit together yet.
If you were on my web page you know how I have been struggling with depression also. It makes coping with the rest of your illness so much harder. So if you ever need to vent or really just need someone to talk to drop me a note. Post here or email me thru my web page. I know how the hopeless some days are if you feel alone and like no one in the world understands what you are going thru. Hopefully we can help each other thru the bad days. ... ...
Re: Sharon and all
Danielle,
My town is like 2 towns over from West Orange. It's not far at all. Sorry it took me so long to answwer your post, I have been in the hospital way more then I have been home since Thanksgiving. I hope that you are doing ok now. I know that when I was in the hospital we had 2 stomach bugs and a cold run thru the unit. It was really bad.
Anyway post when you can and let me know how you are and whats been going on.
~sharon :cub
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"'There isn't anything that happens that can't teach us something,' she said, ' that can't be turned into something positive. One can't undo what's been done, but one can use it creatively.' ... 'Scar tissue is the strongest tissue in the body...So I shouldn't be surprised if it's the strongest part of the soul.'" ~ Madeleine L'Engle, A House Like A Lotus
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"I've developed a new philosophy... I only dread one day at a time."
-Charlie Brown
worriedaboutsteph
Unregistered User
(5/6/03 10:06 pm) Reply
marfans syndrome
hi everyone my name is Brandon and I am worried about my girlfriend Stephani. she has marfans syndrome and I have tried researching it but I would like to hear from people firsthand. I want to learn more about this condition so I can help her. I have been talking to her about it but there are some things she cannot explain to me. I would like to ask some females some questions about how it affects certain actions. I am worried that someday it will hurt her. please feel free to e mail me as I don't always have time to check the website. my e mail is soccrplr@epix.net. please use marfans as the subject because I get a lot of junkmail. thank you so much... Brandon
Kelrox8616
Unregistered User
(5/21/03 12:34 pm) Reply
Jersey
Hey. I'm from Jersey too,near the shore in Monmouth County. I go into Manhattan for M.D. appointments. Ever been by the shore? ooh2
I am the same way. I have a lot of problems but no one is totally sure how they are all connected. So I try to treat and manage each piece of the puzzle without knowing how the pieces all fit together yet.
...
... 
Its at 
ooh2
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