Pregnancy

[Andrea H]

I have some really bad news! Found out I was pregnant about 3 weeks ago, went to see an OBGYN and made him aware of my Lupus situation. I recently moved and havent seen a rheum. in about 8 mo. My OBGYN thought I would be okay informing me that I would have a high risk pregnancy. He ran a lot of lab work and was planning on getting in contact with a local rheum to discuss the situation. Well Monday afternoon I recieved a phone call from the OBgYN, informing me that my lab results came back pretty bad. He told me that I would have to be admitted in the hospital to be monitored. My Hemoglobin level was around a 5 and there was a lot of protein and blood found in my urine, which means my kidneys are being affected to a certain degree. The local rheum. refused to see me and said it would be better to consult with a kidney specialist. I had to recieve a blood transfussion and had various lab work done. Both doctors agreed that it would be better to terminate my pregnancy. They said the timing of the pregnancy was bad because my lupus was at a full flare. They made me aware of the chances I take if I continue with the pregnacy. There is a 30% death rate for both me and the baby. Or my kidneys may fail and I'll have to be on dialysis for the rest of my life. Its been a tough week. Whats a person to do? I know my personal heath is my top priority. One doc mentioned it would be best to have a tubal, and another doc said to try to get in remission and stay healthy and maybe plan it out in a few years or so. Im 24 and my husband and I have always looked forward to having a family. Im devistated! I go to have a kidney biopsey in a few weeks to determine the state my kidneys are in, and then I'll have to go from there. Hopefully I still have a chance. They have me on 60mg of prednisone :( daily for about the next month, and have also put me on a low sodium diet. Any advice? Has anyone else experienced problems such as these. Any support would be greatly appreciated! Im taking things one day at a time. Today has been a little better. I fell absolutly amazing after the tansfussion. But am still a little emotionally drained. I know that things will get better, I must stay strong! :flowers:

[Sara2804]

Andrea-

You and your husband are in my thoughts and prayers. :hugbetter:

Sara

[Anisah]

Oh Andrea,

I'm saddened to read your story. I'm not sure what I would suggest. I think I would do anything to have the baby but your situation sounds very concerning and complicated. Maybe the high dose prednisone will improve things, and the biopsy will be very helpful in making your decision too.

It sounds like this would be your first child too. Perhaps things will turn around with the prednisone. I do hope it does, and quickly.

I'm puzzled by the Rhuemy refusing to see you? He might be able to offer some good advice in your situation - and would certainly be helpful in your treatment and care. I really don't understand why he is refusing to see you.

sending you lots of cyberhugs, :hugbetter:
Anisah

[Raglet]

Andrea, that is such worrying news, you must be frantic.

I have no real suggestions other than take very good care of yourself, and don't rush into having a tubal. That is such a final solution, and it is very early days yet. Who knows, you may respond wonderfully to treatment, and if not, there may well be other babies in your future when your body is well enough to cope.

I am not usually one to recommend doctor hopping, but I think that on an issue of this seriousness (in terms of your pg) I would definitely be thinking of a second opinion. It may just confirm what you have already been told, but even that would be helpful in deciding what to do.

I am sending lots of loving healing thoughts your way

raglet

[Pickles]

HI

As Raglet suggested, DO go get a 2nd opinion, this is your body and your baby they are talking about. It wouldn't hurt and just maybe they can do something to save the baby. Now, I never did get pregnant, don't know why but if I did I would do everything to try to save the baby. Please do what is best for you but do get a 2nd opinion.

Take Care of you and your hubby and please know you are in our thoughts and prayers.

:flowers: :flowers: :flowers: :flowers:

[alobreto]

What an AWFUL dilemma! :o What does baby's daddy want? This is a grave decision that the two of you should be making together so that there won't be repercussions in the marital relationship down the road.

I have to agree that you need input from more than one source. The rheumy, I think, may be fearful of a lawsuit under the circumstances and it just may not be worth the financial risk to his/her practice.

My heart goes out to you, hubby and families as you travel this difficult path.
Regards,
Angela :flowers:

[Clare.T]

I am so sorry that you are going through all this, such very bad luck and so distressing.

I may not have understood where you are at right now, but I will stick my neck out and say that my personal choice in such circumstances would be for termination, assuming that there is notable kidney involvement

However this is of course very individual.

I think it's too soon to be talking of the future in terms of tubal ligation- there's enough to deal with for the time being. It maybe that the kidney disease is eminently treatable.

Hugs and all sympathetic best wishes

Clare

[Maia]

Definitely get a second or third opinion on this matter. I feel for the decision you face right now

Also, here's a newer study regarding kidney issues with SLE and pregnancy which says that pregnancy does NOT worsen kidney issues.

There are higher risks of losing the baby with active kidney disease, but I have not heard of higher maternal death rates... here's the link & I've also pasted the text folowing the link.



http://www.obgynworld.com/international/ne...Pregnancy_does_ (http://www.obgynworld.com/international/news/2005/Week_03/Day_1/Pregnancy_does_)
not_e.asp

Pregnancy does not exacerbate renal disease in lupus patients
Source: Arthritis & Rheumatism 2004; 50: 3941-6

Investigating whether pregnancy affects renal function in women with lupus
nephritis.


Pregnancy does not appear to lead to a flare in renal disease activity or a
deterioration of renal function in women with systemic lupus erythematosus
(SLE), the results of a case-control study suggest.

"In a previous study of women with SLE, we found that maternal renal disease
was a strong predictor of adverse fetal outcome, but studies of the effect of
pregnancy on renal disease itself have yielded conflicting results," note Anu
Tandon (Toronto Western Hospital, Ontario, Canada) and team.

To investigate, they studied 53 women with SLE and renal disease through 78
pregnancies and compared them with 78 nonpregnant patients, matched for the
presence of renal disease activity at enrollment.

Renal disease became active during the study in a similar number of pregnancies
and controls (33 vs 31). Likewise, the incidence of renal deterioration-defined
as a greater than 20 percent rise in serum creatinine or levels exceeding 120
mmol/l was comparable among pregnancies and non-pregnant patients (62 vs 57).

Also finding that steroid use did not differ between the two populations,
Tandon et al conclude: "Renal disease in lupus patients need not be a
contraindication to pregnancy."

Posted: 17 January 2005

[redrose77]

Andrea
I hope you have checked with another doctor about your situation. After you get your second opinion if that doctor agrees with the first one you need to ask yourself if this pregnancy is worth your health or your life. Would your husband want to lose you just to have this child? If he does not agree you need a third opinion because two doctors agreeing (two that have the same specialty) is important. You have some hard choices to make and tubal ligation should not be rushed into. You could have children later or might want to have another healthy woman carry your child for you. You have so many options. I know exactly how you are feeling- I faced a situation much like the one you now face a few years ago. If you ever need someone to talk to who understands I am here and willing to listen without passing judgement. I know how difficult these kinds of choices are. We finally told my in laws that there will never be any more children or pregnancies for us- my husband and I decided my life was more important than chancing my ability to survive long enough for a baby to have a chance at life. My pregnancy problems mean that I would likely (75-85% chance) die before the child could live outside the womb. So it is definately not worth the risk.

[believe]

Andrea,

How are things going for you so far? Sending you well wishes :flowers: It's hard when faced with difficult decision making, as we lupies all seem to face more than other folks.

:love: :flowers: Believe

[SheWillie]

Dear Andrea,
I am so sorry that this was something you had to deal with...it was not fair by any means...I can only imagine your heart break...the only thing I can tell you and this is really important....do not keep your feelings to yourself...it is important for you to let people in and to let them know how you feel....and I am going to say this and I mean it from the bottom of my heart..This is not your fault by any means what so ever, and if you are blaming yourself you stop right now!!!

I know you probably have already heard the "you are young you will have time to have another one" or "there is always adoption" these are very real alternatives, and waiting to get pregnant again will be hard on you, but get yourself well first and then have your doctor help you time it better.....

You take care of yourself and I will keep you in my prayers
Lot'sa love,
Willie

[dmk072977]

i hope you read this ...im in a similar situation ..i am 9 weeks pregnant i have lupus nephritis stage 4 and 5 ..i underwent 2 years of cytoxin iv theropy and off and on prednisone, bloodtest,24hour urine ,numerous meds and now my kidney disease is in partial remmission ... they say there can be many risks to the baby i feel like im on a rollercoaster ride im seeing my kidney doc,obgyn,fetal maternal medicine doc .and lupus doc alls i can do is pray ,stay strong ,hope for the best and take one day at a time .....i will keep you in my prayers ..feel free to talk anytime..god bless.. :D