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Thread: Need some advice and support

  1. #1

    Need some advice and support

    My name is brittani. I of course have CF and I am 24. My mutations are delta f 508 and r53x. I have mostly gut issues and have struggled in the last three years with new liver issues. I went from having a fatty liver to passing gallstones that caused cirrhosis of the liver. I was having a transplant scare for a minute but have since found out that may not be in as near of my future as originally planned. I am a proud mommy of a normal healthy four year old boy. My pregnancy with him was very unexpected and unplanned. I had actually just found this forum and learned how difficult being pregnant with CF could be. I was devastated thinking I would need lots of help to have a baby only to be surprised with a pregnancy. I did not use any kind of help getting pregnant meaning no preseed or mucinex supplements. I have been very fortunate to not have had any major CF related problems or hospitalizations other than birth prior to pregnancy. However I was not being safe in any way of the meaning. No birth control or condoms. It took almost two years of no contraceptives before we found we were pregnant. How was my health? Well I was being slightly rebilous thinking I knew it all and didn't need to take care of myself because I was never sick. My mother had taken great care of me and I had lived a very normal life aside from the normal CF medications. With that being said I weighed 108 lbs (My highest weight pregnant was 114-188) and was 5'3 and my lungs were functioning at maybe 80% not really sure since I wasn't going to the doctor as regularly as I should. I saw two OBGYNS (normal and high risk) as well as an adult physician for CF. I worked two jobs and was 19 yo. No morning sickness or really any other symptoms of pregnancy at all. I was happy and doing well until about 6 months. Due to dehydration I went into frequent preterm labor and was intibated at 28 weeks after struggling to fight pneumonia and malnutrition. After the six month mark I got to where I couldn't eat without coughing so hard I got sick so I stopped eating as much and became very tired and in return dehydrated and malnourished. I did not use any kind of supplements IV or otherwise at all through my pregnancy. I was unable to carry full term and was going to be induced at 34 weeks after two rounds of steroids for my baby boy. Other than being tired I did not feel sick but looking back at pictures of myself I looked sick. I was losing all muscle definition in my arms and legs as well as beginning to be nothing but a pregnant belly. After 28 weeks I only saw my high risk OBGYN and hardly saw my pulmonoligist due to the fact I had been seeing a pediatric pulmonary doctor because I started clinic when I was 17 (I used a private pulmonoligist before that) and he had wanted to keep me as a patient until I was 21 to get me used to the way a CF clinic works until I got pregnant and could no longer use him. I went into labor on my own at a little over 33 weeks (it was a Sunday and I would have been 34 Weeks on Wednesday and induced that Friday). Labor and delivery was a breeze with no complications and I was sent home only 24 hours after giving birth. Little man stayed in the NICU for just a couple of hours and was kept in the hospital for three days because he was jaundice. He weighed 4lbs 12 ozs and was 7 weeks premature. He does not have CF and has had no other complications after leaving the hospital at birth. I however left very weak only weighing 88 lbs and was hospitalized again after two months post delivery. I was oxygen dependent and sent home after about two weeks on a PIC line to continue at home antibiotics. I slowly put the weight back on and recovered at a turtles pace depending a lot on my family to help me with my newborn because I slept a lot after the massive hit my body had taken. My lung functions dropped to 27% and I was not oxygen dependent upon leaving the hospital. I had only one other complication and that was about a year after giving birth when I passed a gallstone into my liver and clogged it causing the further liver damage I mentioned earlier. I have now been dealing with the consequences of this for three years. I have had an ER CP to clean out my liver, MRIS, CAT scans, a biopsy, and about two maybe three hospitalizations for my liver and some gut issues.

    Now let's fast forward to the present.. I know that was a lot to read but I feel like without the back story and the detail it would be difficult for anyone to comment an accurate answer so please bare with me a little bit longer. I have already mentioned that I'm 24 and my son is 4. I am no longer with his father and have been with someone new for three years which is what has brought on the baby fever . I hadn't thought about having another baby because honestly the first time around scared me for awhile and I had thought I would see the light at the end of the tunnel. I had to literally start from scratch and work my way back up to doing normal everyday things like walking into the kitchen for a drink or even sitting up to play with my son. However I have reached the end of that tunnel and it is beginning to be a part of my past. I was in fear of a transplant but it is now starting to appear that may not be a fear or a possibility in my near future which also makes it a better time to think about more children before I do need a transplant. I have been back to an adult CF clinic for three years consistently now. My health only keeps improving. I still have some small humps to get over but nothing major. I now weigh 116 lbs which is still not terrific but a high for me. My goal is 125 which I am trying to achieve in the next two months when I go back to my doctor. My lung functions are in the 90s and have improved tremendously over the past 3 years and even the past 6 months. They either improve or stay the same at each check up. The biggest things I am struggling with now are my vitamins and my liver which I will have more answers about my liver in the next month or two after completing some more test for my new doctor to complete her own work up of my situation. I am struggling with being compliant and consistent with my medications not because I don't want to be but because I live a very active and busy lifestyle which I know is not an excuse and neither is being a mom but I am very forgetful. I am however getting better. My vitamin issues should be corrected or at least improved within the next two months because they are only as bad as they are because I don't take my multivitamin or pancreatic enzymes as often as I am supposed to. I do deal with frequent pain but I honestly think that might correlate and tie into my vitamin issues as they are not just extremely low but almost nonexistent at this point. I am on my first ever appetite stimulator to help with the days I don't want to eat and help me reach my goal weight and BMI (currently at 116LBS BMI 20; Goal weight 125LBS BMI 22/23)

    Now that you have both my back story and current situation I can get to the point of the post. I know my case is very mild and trust me I am grateful but I still struggle immensely with the fact that I am struggling to get pregnant with baby number two. Now I was put on birth control briefly meaning I took one DEPO shot (approx 2-2 1/2 years ago)and decided I Dont want birth control. There were very limited options for me with my liver issues at the time (depo shot, a 80/90% effective pill or a copper 10 year IUD). I went on birth control to ease my mothers mind because she was scared I would end up pregnant again since it had already happened once and let's face it I was not ready. I was in a new relationship with new health issues and still young little boy. However this has changed and I am very much ready. It just isn't seeming to be very easy this time. Not that it was the first time but I thought maybe it would be the second time. I am using no contraceptives and haven't at all in the 3 years I have been active with my fiancÚ. He is 21 and was 19 when we got together. Much different than my sons father who was almost 21 when we conceived our son and I was 19. I have a regular period for the most part with just some irregularities maybe a couple of times a year. I just want to know if any other moms seemed to have a harder time conceiving their second time and if anyone else has similar liver issues and if that could be causing the tougher time. I also want to know if anyone with liver problems has tried infertility treatments of any kind. I know I still have some steps to take to get pregnant on my own like preseed and mucinex but I'm afraid with my liver issues IVF and IUI or even surrogacy are out the picture for me because I had to have hormone free birth control and obvisouly hormones are a big part of infertility issues. I'm just looking for some advice or support from other CF moms wether it's your second child or you're trying to conceive your first. I come from a family with no other CFers so I honestly only have forums like this to talk to other CF women. So please anybody with any advice or support comment I would love to hear from you. I have almost decided to give up but I know my fiancÚ would like one of his own even though he reassures me he is happy with the one I already gave him wether they share the same DNA or not. I know he will never tell me how bad he wants one of our own that shares our DNA but that doesn't change the fact I want to be able to provide that for him or at least know it's an option. I also see everyone out there celebrating their own new babies and pregnancies and want so badly to try again because I honestly feel like I learned so much from the first time that I might actually be able to enjoy this pregnancy and know what to do and ask for to stay healthy. I know what mistakes not to make. I just really need some advice and support. I know someone on here will read this and understand exactly how I feel. Thank you.
    Last edited by Brittnicole421; 05-11-2017 at 03:50 AM.

  2. #2
    Hi, thank you for sharing your story and congratulations for working so hard to get your health back up. No advice from my side, only to say good luck with your decision and (in my opinion) there's no need to rush as you are still young, so you luckily have time to get your current health issues resolved to the best you can, and of course chat to your CF team who may be able to provide you with some next steps.

  3. #3
    Thank you. It has definitely been a whirlwind experience. Between becoming a new mom and having my health plumage all at once definitely put things into perspective and fast. I am just at the point now where my little man is about to start kindergarten and it's so hard to wrap my mind around the fact that this might be it for me. I am grateful don't get me wrong because I know a lot of people aren't even that lucky but pregnancy scares aren't really scares anymore they just depress me when they turn out to be nothing but a false alarm. I'm keeping my head up and was just hoping someone who has been in my position might be able to help or maybe sharing my story would help me mentally too. Just putting it all out there kind of made me feel a little better. But thank you again I'm almost to my goal and only getting better everyday.

  4. #4
    Senior Member
    Join Date
    Jan 2015
    Don't be impatient, you are still young. CF just make pregnancy tougher (both getting pregnant and being pregnant). It would be good to get your weight up before pregnancy. Good doctors and good self care don't keep all the problems away, they just give you the best chance to handle them when the come up.
    Last edited by ethan508; 05-16-2017 at 09:52 AM.
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  5. #5
    Junior Member
    Join Date
    Aug 2017
    You have come a long way. Congrats for all the leaps and bounds you have made. I understand the baby fever. I have a 2 year old and I'm 34. I cannot physically take care of another child. It's something I just know I can't do. It does still hurt. I have cf liver disease but it is stable. I did ivf at 32 without knowing I had cf liver disease. I'm 34 now. I used a gestational carrier bc I had several other factors that made it unsafe to have a child. I knew I would need the energy to take care of my baby. My husband worked a lot in the beginning and I was the primary care giver. I stayed well for the first 6 months. Then my health strated to decline. I have to work really hard to take care of myself. I went through a bout recentry where I wanted another child. I totally get it. I was going to event get pregnant myself this time since I've been stable. But my husband pointed out that all that time away in the hospital from the baby was so hard on him and our family. He doesn't want to lose me or have our son lose his mother. Before Ryder waa born it didn't matter if I took I have to think about how future and what having another child could do to him. As in...less time for him and he could lose me altogether. Now, that being said, I'm older and have more have time before you have to make a decision. I just thought I would share my story. Yours is remarkable. My lung function has never got that low. The fact that you came back from that is amazing. Put on some more lbs, enjoy your time with that fiance of yours and your son before another baby is added to the mix. Babies are so needy and I hear 4 year olds are awesome! Lol. Good luck and try not to stress. If you want to carry another child someday I don't see why you couldn't. Make a goal to be compliant as much as you can. If you can't manage it all now you won't be able to with 2. No judgement here.. I did not become compliant until my mid to late 20s. I wish I negatively affected my health. I had a 3 week stint on the hospital at 29 years old..weight down to 108, LF 45%. I've got it back up to the mid 60s with a lot of work! I used to be in the 90s for like ever. I had mild cf. had is the key word. Also...on the liver issues...a lot of Dr's told me I also had cirrhosis. I finally saw a liver Dr that specializes in cf. He said I had normal cf liver disease for someone my age w cf. I just have to monitor it and I take actigal. I take birth control every day. Have never been told no hormones. The only thing is I can't drink anymore.

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