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Docs giving me the run around


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#1 Karenlee

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Posted 20 June 2008 - 02:15 AM

Oy, where do I start? I told you guys that my trio of OB, rheumatologist, Invitro specialist had all deemed me too "high risk" right now to start the process. So, I get a phone call yesterday from my OB. He had run about a barrel full of blood tests back about a month ago and the results just came back. He ran so many things I could barely keep up with writing down what he was saying (on top of him having the hiccups while he was telling me) but I managed to get out of him C3 and C4 compliment level, DNA something or other and something about coagulation. Anyway, he said it all came back excellent and would not affect pregnancy. (I asked him to mail me a copy of the bloodwork so I could read and try to make some sense of it). Anyway, he asked me to have a consult letter sent from my rheumatologist saying ok to go ahead with the pregnancy process. And I said, well I just saw my rheumatologist yesterday and he said I'm not ready yet and even if I was ready, he'd have to take me off the Plaquenil. My Gyn disagreed and said that's not necessary and that he's had patients give birth to healthy babies while on that medication. He was also sort of pushing me to hurry up because of my age etc. (mind you. HE'S the one that said I am too high risk and sent a letter to my rheumatologist stating that). I am going to wait for the blood work that I had drawn Wed. to see if there's any improvement then I suppose take it from there. I am so leery about stopping the Plaquenil this early in the game as it has JUST started to help me. I don't know what to think. I feel like each doctor is pushing me in a different direction. They are telling me 2 different things.
Anyway, sorry for the blathering. Just trying to sort this out in my head and it helps to type it out. Thanks for listening.
Karen

#2 Sheryl

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Posted 20 June 2008 - 03:30 AM

Karenlee, I guess you do have a lot to think about. If you had to raise a child and be up all hours of the day and night, are you healthy enough? Not getting naps and fixing meals when your little one gets older and is hungry or needs attention. When he/she wants you to play or entertainthem for hours on end. Do you have the energy today? Can you do everything without the help or aid of others? My daughter in law thought they should write a book on how much work and time is spent on a child. There were books but it didn't give her enough information on what she appeared to need. She really had no clue. She also was an only child. I raised one of our grandchildren until he was 6 months old. Because his mother was ill and couldn't cope. I was undiagnosed but suffering from cronic fatigue syndrome myself at the time. It can be overwhelming. If you feel you have the strength and stamina you go girl. You know what you are capable of. You know how you feel. Doctors can only confirm diagnoses they don't know what you are really going through on a daily basis. Don't forget all your babies doctor appointments. It does get harder as we get older, to do everything we could do in a couple hours now, takes a week. I wish the best for you. I hope things work out the way you desire.
Strength and Warmth,
Sheryl

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#3 Karenlee

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Posted 20 June 2008 - 03:41 AM

Thanks for your input Sheryl. You raise all valid points which is why I want to wait a bit longer to let the meds do their work on me. I don't want to be a sick tired mommy. I'm also not convinced that it would be harmless (to the baby) to stay on the meds while pregnant. But the catch 22 I am in is my age. You see the pickle I'm in. I do know how exhausting and draining it can be. I have 6 nephews and one neice and I see what my sisters go thru. I also see the joy they bring (along with the heartache). My oldest nephew recently peirced his ears and didn't tell anyone. My poor sis almost had a coronary. Lol
So, yeah I do have a LOT to think about. And I don't appreciate being pushed by my OB on the issue to "stop dragging my feet" and "what are you waiting for? you're not getting any younger". :( Beleive me, I know how old I am. I don't need him reminding me everytime I speak with him. :P

Karen

#4 Peggy

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Posted 20 June 2008 - 05:30 AM

It sound to me like you have a pretty good handle on how "you" want to proceed. This is a decision only you can make and you have to follow your instincts and your heart. If you feel it would be wise to wait then you should. If you feel that you are finally getting some relief from your medication and hate to take a steps backward by going off of them then you should stay on them. I too would be weary to stay on the medication and then get prengant without some real clarification that it can't harm the baby.

Like I said, follow your instincts and your heart. This is the same that we sclero people have to do is follow what our bodies are telling us to do. Just like you have to fight to get someone to listen to your symptoms and finally get a diagnosis, well now you have a diagnosis and have a game plan in place to fight it and its working you may not want to rock the boat. I sure can understand the desire to have children but it does have to be good for you and for the baby.

I am here to talk if you need someone to listen. I will keep you in my thoughts.

Warm hugs and blessings,

Peggy

#5 truman

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Posted 20 June 2008 - 09:00 AM

Karen:

You know what you want in your heart. You hear the doctors and can only define their meanings. As far as the Plaquenil, you can research that on your own and find the safety factors between the drug and fetus.

Ryan was such a fantastic baby. We were stupid and used to wake him at nights for feedings not realizing the game plan was to have him sleep through the night. It took a couple of months to retrain him again. I remember wanting Dane soooooooooooooo much, I think my husband couldn't stand it at that point. Around 8 and a half months pregnant, I told my ex husband that I changed my mind, I just didn't think I could handle it -_- . He said too late.........he had the worst problems, colic, constant screaming and crying and it was the happiest moment of my life :lol: .

I know you feel you're on a clock, but take at least the remainder of this year to research criteria and where YOU want to be.

Your Pal

Linda
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It is what it is...........

#6 Karenlee

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Posted 20 June 2008 - 09:23 AM

Tru,

Nothing like waiting until the 11th hour to change your mind! Lol!
Thanks for the advice. I do want to wait a bit longer. Something inside me tells me it's the right thing to do. Even if it means I'm risking running out of time.

I know this is a deeply personal topic, and to lay it on you guys is a bit much but I know I can always turn to you all. I deeply respect all of your opinions. I do talk to hubby and he is very supportive, but it's just not the same ya know?

Karen

#7 Shelley Ensz

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Posted 20 June 2008 - 10:16 AM

Hi KarenLee,

If you feel like the right thing to do is wait a bit longer, then I'd definitely say it's the right thing to do. Also, it may help you to read up on sites about "choosing to be childfree". That is just as difficult and proactive a decision as choosing to have a child. And it is often an especially good option for people with chronic illness.

We support you 100% you know -- no matter what you decide!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 Karenlee

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Posted 20 June 2008 - 12:48 PM

Thank you Shelley. It means the world to me to have your support and input.

Sincerely,
Karen

#9 Karenlee

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Posted 21 June 2008 - 02:54 AM

Tange,

Strange that the same doctor that told me I was high risk is the same one that is now pushing the issue. :huh:

And thanks for the offer but I think I'll pass on the peeing doll. I can imagine hubby coming home and seeing me with it. He'd think I'd finally gone off the deep end :P

Karen

#10 Lucy

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Posted 21 June 2008 - 05:11 AM

Hi Karenlee,
One other thought to consider and perhaps discuss with your SD doctor, I was part of a SD group where one of the members got pregnant and it was wonderful all of her SD symptoms went away, however when the baby was about 3 months old they did come back and became very aggressive again.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#11 Karenlee

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Posted 21 June 2008 - 10:24 AM

Hi Lucy,

Thanks for your input. I did hear from one Dr that if I were to become pregnant the disease would go into remission and I would not need the Plaquenil. How he could predict that, who knows?

Thanks again.
Karen

#12 summer

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Posted 23 June 2008 - 11:35 PM

Hi Karen,
I have a 4 year old boy which I am very grateful to have, I have had 3 miscarriages in the past, before my diagnosis of Scleroderma.
My husband and I were trying to conceive again for a second child when I got my diagnosis for Scleroderma. Since my diagnosis we have decided not to have another baby. I am lucky as hubby helps out alot with my son if I am extremely fatigued, but still it tires me everyday. For us though, we thought it wouldn't be fair to bring another baby into the world, not fair for my son either. If I was a healthy 39 year old, we would give it a go, but not with this terrible disease.

I'm sure you will make the right choice, I have read somewhere that if a person with Scleroderma falls pregnant you can go into remission, but after giving birth the disease comes back with a vengeance. Weird, maybe it's all the extra hormones that makes this disease regress for a while.

Take care
Celia

#13 Margaret

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Posted 24 June 2008 - 02:06 PM

<<maybe it's all the extra hormones that makes this disease regress for a while.>>

Hi Celia ,

You know, that is a very interesting concept and you should bring that up to your doctor. Are there studies as to why sclero regresses during pregnancy? Would he be willing to increase your levels of estrogen/progesterone on a trial basis to see if symptoms subside? It may mean opting between Sclero or a greater chance of breast or endometrial cancer.......but those can be cured if caught early. I guess if it was me, I would opt to be the guinea pig and try it.

Take care, Everyone.
Margaret

#14 Shelley Ensz

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Posted 24 June 2008 - 02:50 PM

Hi Margaret,

That's an interesting idea, however, it's not quite that easy (wouldn't ya know?) since as I understand it (keep in mind that I have no medical training at all, and please correct me if I'm wrong) some hormones are actually a cause of scleroderma. And although some people improve during pregnancy, not everyone does; some people get worse. The whole thing is pretty complicated, as you'll see on our Pregnancy and Scleroderma page, as well as our Causes of Scleroderma: Hormones and Chromosomes page.

Just to add more spice to it, Fetal Cells and Scleroderma show that the transfer of cells between mother and child during pregnancy may somehow be involved in the development of scleroderma.

Our Pregnancy page includes over 20 stories regarding pregnancy and scleroderma.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 Margaret

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Posted 24 June 2008 - 02:53 PM

Oh, Shelley.........bummer!!! It sure sounded like a nice idea!!!

M

#16 smurfette

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Posted 26 June 2008 - 07:31 PM

Hi Karen,They
I'm new to the board, but I am not new to motherhood. First some background - I have a 24 year old son and a 19 year old daughter. They are both in college and do not now live at home, but my son lives in a condo we bought and is 25 minutes away and is fairly high maintenance, especially because we are his landlords. My daughter lives in an apartment 1.5 blocks away from our (my husband and my) office and she is also a diva and high maintenance. They are good kids, but it is easier to have mom and dad deal with issues when they are close by, so there we are. I was diagnosed more than 10 years ago but I knew something was up several years before that. My issues are gastric in nature and exhaustion. I also have fibromyalgia and exhaustion, raynauds, a hiatial hernia and a few other goodies that I don't care to dwell on.
Motherhood is a 24/7 job and does not go away even when they get older--especially when your kids are close by for college. The physical demands of carrying them around, changing, feeding and bathing them may go away, but the emotional, financial and psychological commitment continues and that can be extremely stressful. Let's face it our disease does not do well when we are stressed.
Children are a blessing but are nonetheless very demanding. I love mine completely and enjoy them, but I have always wished that they came with an "off" switch for those times when I was not up to handling them. Fortunately I have a terrific husband who is always there for me and my kids. He pitches in when I am too exhausted or in too much pain to be there for them and things cannot wait for me to regroup.
If you plan things out (and with children nothing really goes according to plan) and are in a financial position to have an au pair or live in help, and if your body is truly able to handle a pregnancy you may well be able to enjoy the experience of motherhood. If you can afford help and it is a child that you want but your body cannot take it, and if I am not being presumptuous - have you considered adoption? I know I am not the first person to mention it and I know it has crossed your mind. Your body would be unscathed and if you had help you could do what you could, take care of yourself and enjoy the child to whatever degree the disease allowed. After my years being a parent I understand that parenting is truly not biological. You are too important to so many people to risk yourself if the doctors and you decide that after pregnancy the disease will attack with a vengeance. Only you can decide whether it is worth it. You have to follow your gut.
I wish you luck and good health and I know that whatever decision you make will be the right one for you.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#17 Karenlee

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Posted 27 June 2008 - 01:55 AM

Thanks for your reply smurfette.

As far as adoption, unfortunately hubby and I are on a different page when it comes to that. So for now, just going to wait until I'm stable and try the invitro again at some point. Not sure when though.

Karen

#18 smurfette

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Posted 27 June 2008 - 03:10 PM

Karen,
In that event, I wish you a restful summer and that you feel well soon! I hope that the invitro takes the first time and that your pregnancy is easy and comfortable and that your delivery is a breeze! I hope that your disease goes into a lull during the pregnancy and stays away and that you are able to enjoy each and every stage of your child's development and can savor every moment of parenthood It is an adventure! Enjoy every minute from the beginning of the pregnancy on! Should you decide to go through with this your child will be very fortunate for it will be a very wanted and loved child.
Smurfette

Chocolate, It isn't just for breakfast anymore!

#19 razz

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Posted 27 June 2008 - 06:44 PM

Karen,

I'm impressed with the advice everyone has given you and the many good points to consider. I'm aware of a couple of women withSD who became pregnant and gave birth to healthy babies. It's interesting how the SD went into remission during the pregnancies.

I understand your desire to have a baby. It is a miraculous and joyful event! You do have to weigh your options. Can your husband help out so you don't get overwhelmed? Can someone come in and do your housekeeping and cooking while you get used to caring for your baby? Is your family available to help you? How stable is your SD right now? There are so many variables to consider. I would make a list of what is necessary to raise a baby, then write down your plan. I would say if you have the resources to help you, pace yourself and don't put a strain on your health then it is a possibility. Follow your instincts. Whatever you decide I know you'd be a fantastic mom!



Razz
:)
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