I went to clinic today for a check up, my lung function is up abit (fev1 42%), weight 56.9kg and sats were 97%. My sinuses have some stuff clogging them up, but I haven't had headaches for awhile so they are just going to monitor it. The doctor was going to give me a nose spray but she forgot and did I , oh dear! Im carrying on with the voriconazole, the doctor revealed it costs £1000 for one months treatment so perhaps why they were abit reluctant to give me it?! I had some blood taken to check my liver as voriconazole can mess it up, the nurse used my little reliable vein that I look after for blood tests, i'm very protective of it!
I asked the doctor about getting pregnant, not because I want to get pregnant right away but I would like to know if I am even going to be able to have children.
She said people with a lung function like mine have had babies but there are alot of risks and she can't predict how I will cope with it. She said anything above 60% and she would be happy for me to get pregnant but below and it is more risky. She said there is a risk I could lose lung function and not get it back after pregnancy and if I got an infection during pregnancy I could lose loads of weight as they can't treat it as well as alot of the antibiotics are dangerous to the baby. She said I could even end up needing a transplant maybe 2 years after having a baby if my lung function dropped into the 20's. Obviously these are all just 'maybes'. She said if I had to be referred for IVF e.g if Pete was a carrier of cf or if I couldn't conceive because of extra mucus, they may not accept me as the doctors have to show I am going to live until the child was 16 years old. I'm guessing they look at this as well if you want to adopt. She said if I definitely wanted to do it they would support me and help me but would have to document they had warned me against it. She suggested I talk to my family and bf and perhaps speak to people who have had a baby and they had a similar lung function to me.
So as you can imagine I am gutted, I can cope with having iv's, feeling ill, even knowing i'm not going to live to old age. But to be denied the chance to be a mother if the worse thing cf could do to me. I knew the doctor would say things like this but now i've heard them, it's sunk in abit and I just don't know how to feel. I have to choose to either not have a child or have one and risk getting even more ill, even dying. I just want to know what I did wrong to deserve this? It's not like I have put off having a baby to have a career and now want one but i'm too old, it's not like i'm just not very fertile (as far as I know!) and need some help with IVF. My body is so crap it might not be able to manage to carry a baby and if I try to adopt or have a surrogate they are going to question if i'm going to live long enough, so I might not be able to do that either! People who have kids will probably tell me, oh its not all its cracked up to be anyway, well how would I know? How will I ever know? The people who say that are lucky enough to have found that out themselves, it doesn't make me feel better. Am I selfish to want to go ahead anyway and risk it? I can't imagine never having a family, it's what i've always wanted. I don't want to die and I don't want a transplant or be a burden to others, but I don't want to be miserable wishing all the time I had a child. It doesn't help when there are babies everywhere, god even in the lift leaving the ward there was a baby looking up at me. I cried in the car on the way home and I don't know how much longer I can try to stay positive, I know i'm getting married and I was so happy yesterday as I bought my wedding dress and i've been really positive this week. But whats the point in even getting married if you don't have children, and is it fair to deny Pete the chance to have children or if I do give him that chance to have an even iller wife instead or one that has died and left him with a baby? People who have their health should never take it for granted, you don't know how lucky you are you jammy buggers
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i feel so sorry for you hun as i was the same as you before connor,
if you dont mind not carrying the a baby i would say dont put yourself at risk and go with someone else having your baby for you.
being preg will take so much out of you, i didnt think it would for me up i now have around 20% LF less coz of it.
people with cancer and stuff cant go down that road and there is 2 people on the forms doing it so i dont see why you cant.
have you looked at COTS wedsite? i have had a look and it's one of the top sites in the uk for it. let me know what you think.
keep your chin up
xxxx
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