Really need advice, PLEASE!

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applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/7/2008 11:22 PM (GMT -7)   
hi all,
not sure how far back some people have read on the posts, but a while ago i posted about going to the docs to start the process about getting ready to get pregnant.  I have seen my PCP, Local Nephrologist, Transplant Nephrologist, Neurologist, therapist, gynecologist, high risk paranatal ob and will be seeing an endocrinologist at the end of april to see if i can still get pregnant.  so far out of the docs i have seen two have said its not a good idea to get pregnant. (PCP and Neurologist)
 
ok so here is my problem.  I have researched and researched and researched everything about the pregnancy stuff, i even researched all of my meds and the meds that the docs would be changing me to if i can get pregnant.  but i am still kinda afraid of getting pregnant.  Right now all my meds are in perfect harmony and are keeping me from flaring and i really am afraid to change them.  I really want to have a baby and so does my hubby.  and i looked into adoption (i want to adopt from the philippines where i am from) and do that would cost like $20,000.  and my husband wants a baby that came from me and him, and he is not exactly warming up to the idea of adoption. and the difficult part is not even the lupus or the kidney transplant because those docs are actually optamistic about me getting pregnant and having a baby. but since with me i also have pseudo-tumor cerebri and the neurologist said the only thing i can do is stop the medication and doing that will either worst case bring back those awful headaches or best case the headaches dont come back.  i dont know i'm confused and i absolutely hate not knowing what to expect and i know that is one of the reasons i am so scared.  advice please, no matter how big or little it would be most greatly appreciated.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 3/7/2008 11:58 PM (GMT -7)   
Hi Suzanne. I think that you would be placing yourself at a great risk of becoming permanently disabled if you became pregnant.  Of course this would leave your husband to care for the child and babies are lots of work.  Here's another option:  A co-worker of mine has cervical cancer in remission, but she and her husband still wanted a baby.  Her sister agreed to be a surrogate mom and carried their baby who was fertilized in-vitro (test tube).  Matthew was born a few months ago and is doing great.  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/8/2008 8:57 AM (GMT -7)   
I can't say a lot, as pregnancy is not anything I have experiance with, but...

Sometimes it all becomes more clear if I take some paper and make two columns. One for pros, one for cons. Leave it out for a week or so, you and hubby keep noting things as you figure them out -- include what doctors say, pro & con.

Then go over it together, brainstorming and trying to put "points" with each item. Killer headaches for 9 months -- 35 very bad points. Doctors say kidneys will be fine -- 50 good points. Health, adoption, etc. All you can think of. Add up points to get good total and bad total.

Put it away for a few days, just sleep on it and let your gut and your subconscious figure it out. Don't discuss w/husband or anyone during this time, just let it stew. (This is where you toss in religious or spiritual beliefs, if that's important to you.)

When I use this method of deciding big issues, I find that a clear answer appears!!! What I decide may not match the numbers, or what I initially thought, but I'll wake up one morning and find that one option is overwhelmingly the right choice.

Good luck, and I'm sure your course of action will become clear.

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/8/2008 9:01 AM (GMT -7)   
Hi Suzanne (((hugs)))) this is a very difficult position to be in, Donna had a great idea. I am 36 and in the past year or two have had the desire to have another baby, I have 2 children and my disease is not really under control but I was terrified of having to come off of it because I have improved so much.

I would listen to all of the specialist, discuss it with each of them with your hubby present and see what they say. I know this is a very hard decision to make, you will be in my prayers,
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/8/2008 1:37 PM (GMT -7)   
Thanks you guys, these are some wonderful advise. lynnwood the pro and con list is a great idea and i never thought of it. as for the surrogacy, it would be hard to find someone to do that. my sister has 4 kids of her own and i dont want her to have that burden of being pregnant and taking care of her family and she works.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/8/2008 1:38 PM (GMT -7)   
((((((((( Suzanne )))))))))))

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/8/2008 4:34 PM (GMT -7)   
I am currently pregnant with lupus. I have bad migraines normally and had to stop my medicine for them. If you look at my med list you may be shocked by what you see. I would consult a reproductive genetics expert about your medications which is what I did. They know better than anyone which drugs had the potential to cause problems in the lab but in real life experience did or didn't. That way you have a better idea of what would be safe. I know cellcept is supposed to be bad. Imuran had the potential and the FDA still requires it to be listed as dangerous to pregnancy but real life experience has shown that it doesn't cause any problems. I would also get a second neurology opinion. Your PCP would not handle anything during pregnancy- they tend not to want to treat even a cold in pregnant women. I would also get a second high risk specialist opinion. I spent over a year getting opinions and preparing my body for this not knowing when I would have a remission that would make it possible. For me pregnancy has to occur during a remission because the past has taught us if I am flaring and pregnant I could die from complications that are not normally part of pregnancy- for example pericarditis which I got with my youngest and had to deliver at 36 weeks.

You don't have to use a family member to do a surogacy either. There are women who do that for strangers. Just an FYI most places that handle adoption will not help someone with a chronic illness like lupus find a child, we actually explored that option. Even adoption of foster kids is discouraged if you aren't 100% healthy. It is really sad, but too many people want kids and can't have them so they automatically rule out those who have any health issues and a physical is part of the adoption process. I have a friend with diabetes who was told she could not adopt because of the diabetes. It didn't matter that she had it fully controlled for over 5 years and her health was otherwise perfect, what mattered was that maybe someday it might not be well controlled and that made her a potentially bad parent. If I could have strangled them I would have, she was so upset and hurt.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/8/2008 6:24 PM (GMT -7)   
thanks redrose, i was hope that you especially would answer this post, not that i dont absolutely appreciate whole heartedly the advice from everyone else, i never thought about a genetics expert, does insurance usually cover that? i am wary of surogacy with a stranger, because you never know what can happen. i am greatful though that i dont have heart problems with my lupus, and i had a feeling about not being able to adopt since i am not healthy and i have been seeing a therapist so my guess is that is another negative for me. how is your pregnancy going now, i havent read to many posts and i see that you have posted some things, i hope that you and your baby are doing well i have been keeping you both in my prayers. thank you for your advise.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/8/2008 7:55 PM (GMT -7)   
The baby is doing great, I have had a sinus infection since December and I think it is the reason I have developed the early stages of pre-eclampsia. If you make it to 32 weeks and are at a good hospital the baby will be fine, though it will spend a few weeks in the hospital. My insurance covered the consult- you just have to schedule it as a pre-conception consultation and make sure that you have your rheumy back up the need for the visit. Your pain med will likely have to be changed. I would make medication changes at least 6 weeks before starting trying to get pregnant.

My other pregnancies went very baddly, this one the biggest things have been the sinus infection (part of my sjogren's since I can't take the medication that helps it) and the pre-eclampsia which can usually be handled with medication. I hope that this helps. I will be 29 weeks wednesday and this is the first time I have made it to this point without going into labor at least once. I am really happy to finally have a "normal" pregnancy since the pre-eclampsia is actually one of the things that can happen in a normal pregnancy.

I have a cousin who used a surogate because she had 2 tubal pregnancies that destroyed both of her tubes. She spent a year deciding who to use and choose a woman who had been a surogate in the past for 2 or 3 couples (don't recall) and who had not had a problem letting go- the biggest thing was that the egg used was my cousin's so she knew the baby wasn't even really a part of her.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/9/2008 6:07 AM (GMT -7)   
Suzanne, I don't have any great advice to give you and I can only imagine what a difficult choice you are facing. It might be a good idea to take your hubby to some appointments with some of these specialists so he can hear first hand how a pregnancy might affect you. You have a lot of serious health issues that need to be taken into consideration.

I wish you the best on making this tough decision. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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