Another rant, lab results and babies of the human variety.

[carriej22]

So here I am again, ranting. Today's rant is a little bit different.

I'm sure most of you have the same situation as me now - when you go get labs the results are ready in what, an hour or so? Most hospitals have labs. Due to cut backs, our hospital here in Miramichi is probably losing it's lab. A few hospitals are it seems. The "stuff" will now be bussed from here in Miramichi to a city 2 hours away. A few hospitals will be doing this. So instead of having my lab results available pretty much right after I get bloodwork, it's going to take 2-3 business days for results. This is unacceptable to me. I don't know how or why they think they can do this. I have literally had my Dr. call me twice since being diagnosed only about 1-2 hours after having labwork and him tell me to get my butt to ER.

What now? Will those few days make a difference? I am a bit scared; and also concerned for human error. They are making 100 and something cuts in the province for lab employees, but there will still be just as many people having labwork done. So this means; that human error (stress, more work, extra work) level might be higher. I am also concerned about carelessness and the samples not being looked after properly. They are going to be going through so many hands (including untrained bus drivers). Is the integrity of the samples compromised when this happens? Is it best to test "fresh" samples? Does it matter?

Also; I am having personal issues - babies. Husband wants them - I don't know how I feel. It's a big decision to have children in today's world anyway - on top of having this disease. My doctors told me not to even think about it right now; and I'm not. However I can tell it bothers my husband that I haven't decided "yes, we will try someday" or "no, we won't". I think he would be happy either way - but he wants to know. I am all over the place - some days I really want kids, other days there is no way I would want them (usually the days I watch or am around my friend's kids!). I just don't know what to do. I know some of you who have wegeners have had children after being diagnosed, but I am really struggling. Looking after babies is a lot of work (My sister was born when I was 17, so I did a fair bit of raising her, up all night, being barfed on, and the GERMS!) for a regular human, I don't know how you all manage. Then again, I have two big dogs and three cats and people don't know how I manage to look after them - but they are my babies and I just manage somehow. I am sure it's the same way for people who have kids.

Obviously it's a decision I need to make on my own - but I don't want anyone to suffer on my behalf. I couldn't imagine small kids watching their mom be sick. Mom is supposed to be super woman! I would never want to see my kids watch me lay in bed or things like that; my mom has RA and my sister (now 7) watches my mom lay in bed all day. I don't want to be that mom. In the same breath, I would love to bring children into this world and to teach them about the things I love and show them new things; and have a product of myself and my husband running around. My friends lives now are gravitating towards family, and doing family things and Eric and I have a family of just us. Sometimes we long for children but most of the time we are OK. My mothers side does not want me to have kids - they keep telling me that I won't miss what I never have. However If it makes sense to anyone - and I know I am young - I feel that "maternal clock" ticking. I don't want to wait until I am 30+ to have children. What if it doesn't happen right away? What if it does? It's so much to think about...

We had planned in 2011 (before wegeners) that once we got married we would have children. We were financially stable, owned our home for several years, had jobs... But now this wrench called wegeners is messing up with my inner gears and I am questioning everything. We have been married for almost a year now; and I can't give me husband an answer of what I want to do.

Sigh.

[pberggren1]

I understand where you are coming from 100% Carrie.

I would not worry too much about the lab work. If you are getting ill then your doc can put a rush on it.

I would also love to have kids, but I think that is out of the question for me as well.

[Wanda]

Carrie,

Don't stress on the lab work, and as far as children go, I had my last one at 30. You have only been married a short time. Get to know each other and spend time together before you have children. There's no rush. Your hubby shouldn't make you feel like you need to decide today to have kids, obviously your health will help make that decision for you. You don't need that added stress. Good luck.

[drz]

Carrie you are young enough to have at least 10 plus years before you need to decide about whether to take on parenting duties so there is no rush. The lab thing sucks and you might have to consider driving further to get labs done in more timely manner. I used to do that till I got local lab better trained and things better coordinated with my other clinics.

[carriej22]

I guess you guys are right.

I just feel stressed about the baby thing. According to my doctor; IF I want kids - there will be a "window of opportunity" and I feel scared if I don't use it; I may not have another chance. I turn 24 in a few months; I did not want children before 25. I just don't want to miss out; and then maybe never be healthy enough or in remission or what-have-you. I don't want to wait too long.. My mother had my sister late; and it's just too hard.. Plus I need to think about my husband, he turns 30. He is not pushing me by any means, I can just feel that tension there. We have been together for 8 years, lived together for over 5, so we do know eachother well at this point... It's just a big decision to make anyway; and adding this disease ontop of it isn't much fun :(

Then I worry about all the other things.. Like what if I'm not very fertile (judging by my teenage years - I must not be!), or what if it takes a few years. My doctor is already talking about fertility stuff. It seems everywhere I go it's in my face like some kind of weird warning, or maybe I'm just sensitive to it. I don't know.

[mishb]

I think that you do want children. Reading through the lines........it's what you want. :sneaky:

So, the real question is, how do I tell Eric that I really want children but I am scared.:confused1:

This is exactly what you do say to him - you really want to have children with HIM, but you are scared. Scared of what may happen to your health during and afterwards and scared of how much input you can provide as a parent once you have them, and would like to wait until you are well enough to be able to look after them, and not leave the entire raising process to him.
You also need to let him know that whilst you are on MTX, you cannot have children (google it) and therefore you will need to discuss other options with the specialists, once you are feeling well enough.
He also needs to know that there will need to be lots of changes for the household to survive. He will have to do a lot more things around the house, from cooking to cleaning to nappies etc.

I think you can do it and one day, look forward to the gorgeous photo's of little Carrie and Eric's :hug1:

[carriej22]

Thanks mish,

I have been off MTX since Sept, I am on azathioprine now. I would prefer to be off ALL drugs before I try to have a baby - I know they say aza is safe but I am just not comfortable with it. This process may take a few years and I am ok with that. Do we have higher risk of having babies with birth defects because of the drugs? I have a mentally retarded cousin (who passed a few years ago at age 32) - and we all loved him but obviously I want to do everything I can to have a healthy baby (if I even have babies).

If I was a healthy person, this wouldn't be a tough question. I always wanted babies. I just really hate this disease.

[mishb]

Sorry, I forgot.

A google search showed that AZA is indeed safe for pregnancy and that the risk of birth defects is exactly the same as for a healthy (non medicated) female.
Of course there are risks with all pregnancies and it's what all of us mothers feared.

The problem is the WG and I personally would probably like to be 12 to 24 months flare free before trying.........but hey, no-one says you can't practice.
As we have all been told - practice makes perfect :flapper: :lol:

[Alysia]

Hi carrie.
Im sure you will be great mom.
being "older" mom is being more mature mom.
you have enough time to do it safelly.

[BrianR]

Hi Carrie (I finally remembered my password so I can log on again!)

Ah kids...to have or not have, that is the question. So much to think about. I just have a few thoughts for whatever they are worth...1. Don't get stressed...2. you do have more time than you think...3. kids are great except for when they're not (HA!) 4. because you are thinking about it means you will become clear on what you want, it will just take some time but again, let it come to you, do not think you need to rush. Marta had Hana when she was 40. I was 47. It was the perfect time for us. Any earlier would have been too early.

As for your blood tests, I agree with Phil, no big deal. Do not let this stress you either.

I also echo Michele's advice...practice, practice, practice!

[greenjeep]

Don't get me started on the rant! Don't mean to sound cold, but the lab thing is personal to me. I work in the medical field, and here in the US, we are just beginning to see the effects of socialized medicine. I'm sure the system works much better in Canada and Australia and England than it will here, but the doctors I work for are terrified and it's not because they wont be making millions, it's that we will be forced to close our office - probably next year. Anyway...

About the baby thing. You will get lots of different advice from each side of the issue and it will ultimately come down to how you feel about it. If it were me, I wouldn't let this disease determine the outcome if I had the choice. It might be had to time it with all of the drugs that you might end up on - maybe adoption? It is a huge decision, but I have a 9 year old daughter and I feel like my life started when she was born. She is the reason I fight this disease so hard. I have 3 dogs and taking care of them is nothing like children. I loved my dogs like kids before my daughter was born, but your existance will change with human babies. The meaning of life will become apparent - if you pay attention - and it has nothing to do with WG.

Saying all that, I do know how daunting it must be. I wasn't real excited about kids before - I just didn't want to deprive my wife of the chance - but now - looking back - it saved my life. And she is happy. She is concerned when I go into the hospital or get tired, but someday I'll be gone and she will have kids of her own and her life will go on. Hopefully she will be happy then as well. I consider it my job to try and teach that to her. Bad things will happen to any child. That is all part of life.

I could say more, but perhaps ive already said too much! Sorry if I stepped on any toes - just my 2 cents.

[pberggren1]

Carrie, Brian is right about having kids. You already have a perfect husband that loves you to pieces. He obviously wants kids. But I can certainly understand your fears. Like Brian said, you have time. There is always the option of adoption as well. There are millions of kids out there wanting to go to a loving home. Brian and Marta are an amazing couple with an amazing child. I will never forget meeting them all. Hana made such a deep and loving impression on me that I will never forget. Children are certainly a gift from God.

[Rini]

my mom has a different AI and I strongly feel like me and my sister developed ours from having similar genetics. I am 20 and planing school and work and also decided what I would like to aim for as doctors explain I would only get the window. I worry about this being genetic and inflicting this pain on a child when so many kids in the world already need homes. My mom was not really diagnosed when she had me and i seemed the only healthy one till 2 years ago when i flared. My sister also came into my life latter and my mothers body had been trough the appropriate medication but now they share the same AI. I understand medicines are getting better and, I love my family and, the odds of my kids getting this is in no way proven, but i really understand your confliction. I agree on the clock ticking thing and I am not really even in that part of my life yet. this really has to be a personal choice but I believe you have the experience to handle any of the options and this time not on your own.

[carriej22]

It's nice to hear everyone's input on such a "sensitive" subject!

I tend to go with the flow, and that's what I will probably do. Hubs and I had a talk and I'm feeling better about it. He told me he would love to have kids; but he wants me healthy and happy more than he wants babies. So that's the plan of action - I'm going to try to put it out of my mind for now... Focus on getting off these medications, and getting healthy. I think everyone has this image of their life of what life is "supposed" to be like; go to school, get a job, get married, have kids. Any deviation from that feels like you are doing something wrong (at least to me).

I was raised by my grandmother, so sometimes I think a bit old fashioned. I told her I wasn't sure I was having children, mostly because of the disease - if I wasn't diagnosed with wegener's last year I would probably be preparing the spare bedroom! (please keep in mind, I love my grandmother like a mother as she raised me. However she speaks her mind!). She thought about it for a bit... And she said "What will you do if you don't have children?". It's a hard question to answer - as those of you with kids have replied that you live for your children. Right now; I could not imagine living for anyone else but me.. Which makes me selfish and maybe too selfish right now to have children. Before this disease, I never lived for me - this disease has made me think of "number one" (myself) more than I ever have in my life.

It's a lot to think about. I think deep down I know I will have children... I just wish this stupid disease wasn't in the way.

[HopeinTN]

I don't think there is a real "window of opportunity" anymore. Women are having children at all ages. At your young age, I think you have plenty of time to think on it and not worry about it. Nothing has worked out in my life the way I thought it would, but it worked out the way it was supposed to I guess. I was diagnosed just before my 40th b-day and had been with my boyfriend for 3 years and planning on marriage and children...all that got put on hold. I don't need the extra stress in my life, I need to focus on getting better and being healthy.

Neither of us had been married or had children, and I just turned 41 and he turns 50 in June. Time for plan B.

Anyway, give it some time and enjoy a healthier you and marrried life a bit!