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especially for women
- Thread starter scarlett
- Start date
Hello Everyone! My name is Heather and this is the first time that I have ever used CF.com. Just like everyone else, it does feel so good to know that there are others out there that are going through similiar issues that I am. I am 28 years old and have been married for 2 years. I was diagnosed with CF as an infant becuase I had an older brother who was diagnosed before me. Unfortuantely, he passed away at age 10. I am an extremely healthy CF patient. If I didn't tell someone that I had the disease they would never know. I have never been hospitialized, and don't really suffer from any lung complications. Digestion and my sinuses is where I have problems. I too have a "pregnant looking belly" and suffer from many aches and pains in my stomach. I have sinus infections every month and live on antibotics. I did have sinus surgery a year ago, however no less than a month later I had yet another sinus infection. I do plan on having children very soon. We have been trying for about six month now, but to no avail. I am an elementary school teacher and work out on a regular basis. I am curious to find out if there are CF patients like me who really don't suffer much with any lung complications, just stomach problems?
I am 17 w/cf and I plan on having children someday, not in the near future though. A lot of you are talking about being infertile though. I know most men with CF are, but I did not know that women really had a problem, other than the mucus down there being thicker. I want to hear from a woman that has CF and kid(s). How long did it take you to become pregnant and other things like that. I know 17 is young to think about children, but I just want to be prepared for whatever CF throws my way. Also about the pregnant belly look, I have that problem too. I don't really tell anyone about my CF and people make fun of me and tell me I need to do sit-ups and stuff. It hurts my feelings. I guess I don't talk about it b/c no one in my family does. My mom gets mad if I talk about it. My brother, 16, also has CF. We haven't had a lot of problems. I have never been in the hospitol, but I am pretty much always on antibiotics. He was in the hospital 9 times as a baby, all before he turned 2. He doesn't really have a lung problem, his is mainly digestion. My problem on the other hand is respirtory. I have not had a problem at all gaining weight, my only problem with my digestion is the bloated belly. I started my period when I was 12 and developed pretty much the same time as my friends w/o CF. Before some of them. Also, I do not know anyone in my area, besides my brother with CF. If anyone is from MS or anyone that wants to talk, email me at sbr082387@yahoo.com Sara 17/CF
HollyCatheryn
New member
Kegel exercises, like they teach in childbirth classes. It helps, but I still have to make sure I am well-flexed before I cough, or risk it.
HollyCatheryn
New member
I have had very irregular periods ever since I got mine at almost 15. I have been known to go as long as 6-7 months without a period. More usually it is 6-10 weeks between and then pretty light. The only time I was regular was for about 6 months before I became pregnant. But even then, I skipped a period before I got pregnant (so my due date was really screwed up). My daughter is a little more than 2 yrs old now, she still nurses - yes, I breastfeed. I breastfed her exclusively until she was about 14 months old and she started getting interested in what was on my plate. I normally have trouble gaining weight or keeping it on, but I was able to gain 30 lbs during my pregnancy. I lost it all nearly immediately. It seems to me that getting pregnant was the best thing for my health. I've only been in the hospital 2 times in over 3 years which is way better than before (usually 2 times a year). I've tried to learn to chart my fertility signs, but I'm having some trouble with the mucus consistency. I suppose that is to be expected. I had no diabetes during my pregnancy even though I've had diabetic reaction to other things in the past. I wonder about other women having breastfed their babies. What about being pregnant with multiples, I know one lady has twins and another has triplets!Also, what aboutport placements. You know, most of the guys get theirs right under their collar bone, but that always seemed yucky to me for a girl. I've had my two in more hidden places (under my bra line on the left side and on my right side even with my nipple below my armpit - I like that one better).What about dealing with dark circles under your eyes during a sinus infection. Sorry to ask so many questions in one post. Thanks for the GREAT topic, Scarlett.Please get that website up and running. We need it and I'd refer everyone in my clinic. Let me know if you need help and I'll see what I can do.
SOOOO happy for this topic!I'm 28 w/CF. Diagnosed at 6 weeks. Older sis had CF - died at age 7. No one else in the family has it. I've been married 3 years this August. No children. I stopped working a little over a year ago and went on disability so I could concentrate on my health. I do not have pancreatic insufficiency that causes me to need enzymes - I do have cranky intestines, though.Anyway - here are my comments:a) TESTING: if anyone in your family has CF but you don't, and you have kids - test them right away. My sister wasn't diagnosed until 2 or 3 years old because the doctors kept saying it wasn't CF (even though my parents thought it was). I got tested right away - to be blunt - I'm still alive, she is not.b) SCHOOL: all of my teachers knew I had CF - they had to in case I had a coughing fit or problem in class. Also - I'd come to my first class late, often, because of treatments or coughing. No one minded. I never received special treatment other than being able to come in late or being allowed to go out in the hall or bathroom to cough. Never did they act like they pitied me. They never went easier on me. c) EDUCATE: Regarding those CFers and their family members who don't talk about CF - I used to hate talking about it because I was embarrassed, my parents, however, felt comfortable talking to people about it. One day my Dad said - how else will people be educated? So now - I get frustrated when I hear CFers aren't comfortable talking about their disease - it's important to talk to people about what you are going through. Also - how on earth can we expect to raise money for CF research if you aren't talking about it???!!! I encourage all of you to educated as many people as you can about your disease. If you have a biology teacher talking about CF and not giving the right info - either tell them in class so the students don't go off with the wrong info, or tell them after class privately so they can bring it up the next day. Breast cancer, AIDS, etc. all get an incredible amount of funding - why? Because people are so aware of the diseases. Let's get CF as "popular" as those other diseases!d) BELLY: I hate bloated belly. I have it right now. It makes it hard to breathe because it's pushing on my diaphragm. Most of the time - I have a nice 6 pack from all my coughing, but for some reason, and I have no idea what sets it off, I get bloated belly for long periods of time. I mean - I can go from wearing a size 2 pant in the morning, and needing a size 10 in the evening. It's depressing. I have no suggestions as to how to dress nicely and still have this (other than wearing control top panty hose), especially when you have to wear a fitted evening dress for a special occassion and it looks like you are 4 to 6 months along... I tend to wear a drawstring pair of pants on my bad days - the drawstring sticks out and the waistband is gathered a bit because of the drawstring, so it kind of camoflauges that my belly is actually what is making it stick out! I have also noticed that I have a tendency to hold my belly like a pregnant woman does (putting her hand on her belly and rubbibng it slightly or whatnot) when I'm having my bloated days. I think it's just out of the want to be pregnant <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's kind of a weird thing I don't often realize I'm doing.e) BEING FEMALE: I often don't feel womanly. I feel like a walking laboratory between the crap coming out of my mouth and the crap coming out my other end <img src="i/expressions/face-icon-small-smile.gif" border="0"> between all of the meds I have to talk and all of the breathing machines next to my bed, between having to LOOK at what I cough up and poop out, having to assess my health everyday. Plus - I hate the fact that we have to cough up mucus through our mouths - why on earth would my husband want to kiss me?! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Not to mention bad breath from sinus infections and just plain being sick. But, other times, I feel darn sexy. And still other times, I'm not breathing well enough to be intimate with my husband. When I cough in public - I feel like the most disgusting person in the world. When I have to cough up into a kleenex in front of people - ugh. How to cope with this? Well - now I try to find it intersting - as in, hmmm - my cough sounds tight today, or - my sputum tastes saltier today, or - hmm my poop is an interesting color, I wonder what I ate that caused that, or, I'm having difficulty breathing - what set it off? So now, I'm trying to hear every little thing my body is telling me. I recently got assessed for lung tx and found out my body is VERY healthy and strong, except for my lungs. So it made me realize - my body is working darn hard to keep me going - so I better appreciate it. I've now viewed my body more as a machine that I'm in charge of - and I now appreciate that happens with it. f) BOYS: I never had trouble with boys - I always dated people I knew through friends or that I was already friends with - so they'd know. It'll come up on the first date when you're talking about yourselves. Don't be afraid to mention it - and don't worry about what to say - THEY will ask the questions. Every guy I've dated has been amazing with my CF - they've found out as much as they could and helped me with my meds. The onlly trouble I had was some of them would feel like they couldn't control the disease, so they'd try to be more controlling over me. g) LEAKAGE: Peeing when I cough - I always used to use pads meant for your period - this never worked real well. I finally started using pads that were meant for this sort of thing (like Poise or Serenity). WOW - they are amazing! I just use the extra strength panty liners and boy can they hold their pee! And - no smell! I highly suggest using these. And of course - cross your legs or try (if you are sitting down) to kind of use the heel of your foot to "plug up" that area.h) YEAST INFECTIONS: I get yeast infections all the time from my meds. Diflucan is awesome. Also - I get it in my mouth - and the Mycelex Troches work great (they also work for when you get sores in your mouth from inhaled steroids like Azmacort). I've noticed that the typical dosing for Diflucan (100mg, for one day) doesn't work that great - you can take up to 400mg in one day - I recommend (talk to your doc of course) that if the 100mg pill doesn't clear it up after 24 hours - try taking 2 pills the next day - that usually does the trick. First thing I request when I'm going on IV antibiotics is enough Diflucan to run the course of the meds.i) CHILDREN: I am still coping with the fact that I'm not going to have kids. My docs said it wasn't the best idea for me, and I've decided adoption also won't work because kids are always sick and they will bring those colds home. When I have my transplant - I'll be on meds that lower my immune system - which will make it all the worse if I catch all of their colds. Also - I barely have the energy to take care of all of my health stuff - I don't see how I could spare anything for my child - who I would want and need to give 100% to. I still think about it, and I'm hoping there will be a cure soon or something will happen that will make it safe for me to have kids...in the meantime, it's really depressing when family members or friends have children - I love kids and would give my arms and legs to have one with my husband.j) FRIENDS: I've been open with my friends and they've all been great. But - I have pretty much opted not to have friends - I don't know anyone my age who is married, so everyone my age seems to only want to go out and drink and stay out late - I can't drink and I don't want to stay out late and I don't want to be in a crowded bar inhaling smoke. Plus, I just feel I don't have much to offer - I don't work anymore so I don't get out much. I've had to stay in my apartment for the past year without going out (up until recently) because I was avoiding cold season and I was ill....I finally talked to my friends about it and they said I had lots to offer and not to worry about it, and they all understood me not wanting to go out to party, so they work with it. I still don't socialize with them much - I've become a hermit. I don't like it. It's also hard because I don't work anymore, and they all do. So during the day - it's really just me. Luckily, and oddly, my Mom's friends meet me every after noon to do chest physical therapy and help me exercise (they are nurses) and I get along with them SO well. I think everyone is right - we mature faster - so it makes sense that I could get along with 50+ year olds better than girls my own age!k) EATING DISORDERS: I suffered anorexia for about 10 years, an bullemia for a brief period. I found out many CFers go through this. It's mainly a control issue. Eating is one of the things related to our lives and our health that we CAN control so it is actually not suprising to have an eating disorder. My advice is that - we do a heck of a lot better with more weight on our bones. My PFTs went up dramatically and I stayed off IVs for a long time once I put on weight. I still tackle these issues. Especially with the bloated belly thing. But - as I said before - my body is working so hard for me, I need to treat it as best I can. It deserves it.Ok, now that it is 1am, I'm signing off now. Feel free to email me - though I do suggest everyone try to put their thoughts here and not just email them to people so that those women visiting this site can read through all of our thoughts. Anyway - you are all amazing people, and it's fascinating how alike we seem to be. Not only in our symptoms and problems, but how we deal with what is going on with our bodies. We are not only marvels, we are marvelous! (ok I just came up with that and my only excuse for being such a nerd is that it's 1am, though I can't use that same excuse all the time). Blech, my belly is bulging over my underpants. Soooo sexy. <img src="i/expressions/face-icon-small-smile.gif" border="0">Love to all of you,Piperpmcp@comcast.net
A few more:l) CLUBBING: I've always had mild finger clubbing, but I've noticed it's gotten worse this year - clubbing does get better and worse depending on infection. My rule of thumb has always been - no nail polish (which is handy because I use a pulse oximeter daily and it doesn't read correctly through nail polish) or light colored nail polish, and keep them short (which is also good because long nails tend to harbor bacteria). But - if it doesn't bother you - than don't worry about it. Guarenteed the only people that will notice your clubbing are other CFers. This is because fingers and nails come in all shapes, heck - my husband's fingers look almost like they have clubbing because he's dropped things on his nails (hammers and things) so much!m) VOMITING: I puke when I cough. Sometimes it's bad, I'll puke all over the bed. Sometimes it won't even need to be a hard cough. I've heard there are ways to cough so as not to cause you to puke - one respiratory therapist suggest putting a pillow against my belly...I don't know if this works or not - but certainly I don't carry a pillow with me in public or in the car (driving is a whole different issue - between puking and peeing when I cough!!). Anyone else have experiences with this?n) STEROIDS: I've taken steroids a few times in my life. Once, when I was in 5th or 6th grade - I was on them for a year - this was terrible - I got so fat and hat that moon face thing - kids were SO mean to me. It was scarring. I've kept those scars with me, unfortunately. Now when I'm on steroids - I try to avoid going in public. Luckly I will only be on them for about 30 days. I know with the lung tx I'll be on them constantly. My husband said he never noticed my last moon face or the fact that I was bloated - ahhh love is blind.o) MORE PEEING: I drink a lot during the day, thus, I wake up every 2 hours during the night to pee. It's annoying, but there is nothing I can do about it. Women tend to need to pee more at night anyway. Anyone else deal with this?p) THROAT CLEARING: When I have a sinus problem or it's just a phlegmy day - I clear my throat - a lot. It sucks when I'm in a movie theater or someplace there is quiet and there I am breaking the silence with my lovely throat clearning. My parents tell me to drink water to help, but it only helps while I'm actually doing the drinking <img src="i/expressions/face-icon-small-smile.gif" border="0"> Anyone have quick cures for this?q) MORE BELLY: I think it's because I swallow mucus - but my belly makes some fascinating and LOUD sounds. I can't burp (for some unknown reason), but my belly makes really loud bubbly sounds that sometimes keep me up at night because the bubbles go up my throat and aren't real comfortable (it's not acid reflux though). They are embarrassing too - I used to hate test days during schools because my stomach would make such noises. Any thoughts?r) GAS: I go through periods of lots of gas - I did especially in high school. Luckily, my friends would feel comfortable to let one go around me - so I didn't feel as bad. Nowadays, I keep myself regular and "cleared out" by having prune juice or prunes or dried fruit everday - big help. I try GasX and all that stuff. I've heard coated charcoal pills can help greatly...s) MARRIAGE: I have been married, like I said, for almost 3 years. He's been great - his familly has been amazing too - they've all offered to be donors if I need a living donor for lungs. They've called the CF Foundation in their area to get more info, they give $ to the CFF as well. I couldn't ask for better in laws. My husband has been great with it to - it's just a matter of training. For example - when I cough at my parents' house - they automatically get me kleenex. So I had to teach him that when I cough - to try to get me some Kleenex immediately. Or, on those hard cough days, something to puke into. He knows all my meds and what kind of pee pee pads to get me from the store. He doesn't complain when I puke on the bed - he just balls up the comforter so we can clean it. I've puked on his clothes before and he didn't care - we got a good laugh out of it. I've peed in the bed, peed in public...we just kind of get a kick out of it and laugh. He doesn't find my excretions un-sexy. The only issue we've had is that when I'm in the hospital - he tends to throw himself into work and doesn't visit as much as I'd like (granted - he still visits almost daily). One day he said - I work more when you're sick because that's all I can do - I can't help you, so at least I can bring in some more money for us. I finally told him - you being here for me does more than any of my medicines. That did the trick - plus, last I was hospitalized, I was hooked up to a heart monitor that was in my room - and when he went to hug me, my pulse dropped (I am always tachycardi) from 120 to 100. Now he has proof that I'm healthier with him around! He also told me this week that one morning while I was sleeping, he cuddled up to me, and could feel my heart rate immediately slow down. Ahhh... love.t) TACHYCARDIA: Anyone else have this? At rest - I'm excited if my heartrate is 105, it'll often be 115. It's always been this way, sick or not. We always figured it was my medications. My doc says though that my heartbeat is REALLY fast (as in not as fast as other CFers I guess). They did studies on my heart, though, it found it was strong as a horse, so I think it's just my body working extra hard to keep the rest of me going strong (as I said before - we found out that I'm darn healthy aside from my lungs - my aterial blood gases were absolutely normal!). We've tried changing my meds, but of course I'm always going to be on bronchodilators (I also have asthma).u) WORKING: I worked since I was 16, held full time jobs and followed a great career after graduating from college. As I said, I went on disability a little over a year ago. Anyway - I brought up this topic just to let you know - for those who want to work but can't work other than from their home - I've just started a course for Medical Transcription. I have heard that you could do it from home but never believed the hype. Finally, I asked my Mom, who is the CEO of a hospital, if it's a real job. She said yes and encouraged me to talk to a career counselor. So, I met with one, we talked about it, she showed me some of the coursework and helped me get in touch with schools. I wanted to do a course either via correspondance or internet - so I found one through my counselor, ended up earning a scholarship to take the course - and I've been truly enjoying it. I've met other people who do this from home and they do make a comfortable living from it - a lot of stay at home moms do it, and there is actually a big calling for people who do this. Anyway - just wanted to let you girls know it's a job option. I actually plan on, once I've done it for a year or so, beginning my own transcription company, and helping people with disabilities get trained for it, find sponsors to set them up with a home office, and get them jobs doing it. Ok - I'm really signing off now! Sorry for such long postings - I just thought if I shared everything I was going through - maybe I'd find out that some of you had the same problems. Plus, I like to share my experiences with other CFers so we can learn from each other.Piperpmcp@comcast.net
Ohmygosh! It's almost 2am. I swear this is my last posting for the night! You are all probably sick of hearing from me at this point.Anyway - a couple more I thought of:v) HAIR LOSS: Anyone else have this? I have VERY thin hair (didn't when I was younger), I noticed it start coming out a lot in my early 20s. Now, I have basically areas so thin they are pretty much bald. I always thought it was my meds but my docs said no and no other person had complained of this. I finally found out Atrovent (Ipatropium Bromide) can cause it. Anyone else have hair loss issues? I'm trying to pinpoint if it's medications, health, or what.w) BREASTS: I have none. This is mainly family related - my aunt seems to have gotten all the breasts in the family. The rest of us are very limited in that area, I'm probably even smaller than I should be because of CF. Anyway - I hate HATE bras. I hate anything that constrics me around my chest. I don't need bras really (except during my period when they are a bit bigger, but even then I don't wear bras), so I wear a tank top under my shirts. Anyone have other solutions to getting around a bra but not just having one's nipples out there under your shirt for everyone to see? The tank top method works ok for me but sometimes it feels a little bit bulky. x) DRINKING: I avoid alcohol like the plague - it makes my airways irritated, makes me cough immediately, and dries me out. I highly suggest CFers don't drink because it is really really really bad for them. I went through the typical teenager phase of partying - but got over it. Now, even a sip of champagne makes me wheezy. This is actual normal - even nonCFers have trouble because alcohol sucks out the fluid from your body. I always put up on the CF boards that we all need to drink lots of fluid. The recommendation for a healthy person is at least 64 ounces. I drink double this and I can't tell you how much this has improved my health. My parents always told me to drink but I'd be happy if I had two bottles of water in a day. Now, I drink the equivalent of 6 or 7 water bottles a day (not just of water, I include juice and tea and things like that). This helps flush the crap out of my lungs that my mucus can't get out because it's too thick. It keeps my kidneys healthy too. It helps with constipation. I also feel better. I don't suggest drinking all of this in water because it can actual cause problems. Try mixing a little salt or some juice in your water to help it "stick" in your system. Or, drink Pedialyte or Gatorade cut with some water, etc. Also - I personally avoid soda - it causes severe bellly bloat and gas. I get so bloated it pushes on my diaphragm and causes it to be hard to breathe. So - if you notice you don't feel great after having something bubbly to drink, trying going without soda to see how you feel.Alright, I'm going now. Sadly, I still have a treatment and exercise to do!!!Piperpmcp@comcast.net
So I lied...y) REAREND: I get hemorrhoids. I get yeast infections. I have trouble "cleaning up" down there on those cranky intestine days...I highly recommend using Preparation H wipes. They come in tubs or individually wrapped for your purse. They feel very nice and they help when you can't quite clean everything after having the runs or something like that, and they really help when you get hemorrhoids from having to over wipe. Plus - when you have a yeast infection, that entire area can itch, and it helps soothe the area.z) PERIODS: I got mine at a normal age. Other than when I had eating disorders, I have gotten them every month. They do get off schedule quite a bit, however. Where I'll get them two weeks apart or something like that. Anyway - I know women have mentioned it, but I'm trying to pinpoint at what time it happens - I know our lung function changes at some point during our cycle. I think mine is when I have PMS - like the week before, and somewhat during. I once read in a magazine a breakdown of the weeks of our cycle - as in week 1 we'll have bloating, lethargy, etc. Another week girls have lots of energy and feel great, another week we'll be pimply and greasy and gassy, etc. Anyone ever worked out their lung function and their cycle? I'd be interested to know. Woohoo - I made it to Z! Seriously need to go to sleep now. 2:06am!!!! That reminds me - what to do for those dark circles CFers get under their eyes? Make-up doesn't do anything for mine. Anyone try creams or something? I did find that Murad Vitamin C undereye cream helped quite a bit, but didn't get rid of them. It probably lightened them by half, sometimes more, sometimes less. It did make my eye area look healthier. This also reminds me - I once brought up a topic here about weird allergies from being on lifelong antibiotics. I'm allergic to an soap (including toothpaste, shampoo, body soap, etc.), cinnamon, mint and flouride. I developed these in my early 20s. Piperpmcp@comcast.net
Well Piper that was a lot of info, and interestingly there were many things I related too - some made me laugh and some made me wince. I wanted to share with you how I hide the dark eyes. If you wear makeup, that is, I use - I believe is it Physician Formula - a tube that is green on one end and flesh colored on the other end, green first then flesh, then cover with regular makeup, is works great for me, but a little green goes a loooooong way. It also is great for covering all blemishes. In movies they put cucumbers on their eyes - I wonder what that does?Hey, I have a question, if you ever read this post again. Do you do the Vest or other type of treatment, or do you have people clap you? Just curious!
Sarah - thanks for the tip about the Physician's Formula! I'll probably pick up a tube next time I'm at the store. As to your question about my chest PT - I have good old fashioned clapping done 1-3 times daily, one session lasting one hour, the other two sessions are fairly short. I do have a Vest at home but never got great results from it - but my clinic just told me last week that it's not necessarily going to make me cough - it's just supposed to open up pus pockets (mmm yummy). So, I'm supposed to start using that twice a day for 30 minutes each time. I also just had an Acapella device ordered to do 1-3 times a day. Also, a woman just gave me a Percussionator (a handheld vibrating thing) which I use during my one hour long clapping session. Oh - and during my clapping CPT, the person who does it used to use a back massager on me to help loosen things up before I got the Percussionator. I also have an IPV breathing machine that I do my nebs on which acts like an internal Vest. I also have the Flutter that I use from time to time. So - basically - I'm shaking through most of my day now <img src="i/expressions/face-icon-small-smile.gif" border="0"> I do a heck of a lot of exercise too. Piperpmcp@comcast.net
I would like to comment on that:I will be 31 tomorrow.....and thank GOD I have had the opportunity to age. I think those with a serious illness realize how precious each day is and who cares about the little things like wrinkles...or a bad hair day! I know I dont! Just my opinion....but I am thankful for my life!Dea
Oh Piper. I am sitting here thinking I wished I lived near you. Most of what you were saying I relate to, especially being married, people our age not being married and wanting to party all the time, being a hermit and having not that many friends. We could be great hermit friends together...lol....OH and do you also visit a site called CF2Chat?I think you put a lot of great info out there. Email me sometime. akcooper_01@hotmail.comAmanda