View Full Version : A torn decision-help!
Pretti in Pink
04-12-2007, 12:56 PM
You guys seem like a good place for me to turn for this TOUGH decision. I have posted my bio regarding my lupus diagnosis, flare and having to deliver my baby at 5 months due to the flare(aug 06). Well after that some of my doctors stated I should never get pregnant again and a couple of others said just wait until I went into remission. I was on dialysis (due to lupus nephritis) but got off in Dec. (thank GOD!)
Well, I had an appt. w/ my ob/gyn in Feb for my well woman and to discuss me getting and IUD but my cycle came that day and I had to cancel. Well now in between that time I have gotten pregnant. My husband and I weren't trying and it was an accident.
Well, today I saw my rheumi and ob and that were not positive at all. I am very aware of the risk of my kidneys failing again, me having a flare, possibly going back on dialysis, etc. But I also say why would GOD allow me to get pregnant for me to turn around and terminate. My faith in GOD says that he is just using me to be another testimony to someone as to what GOD can do but after my visit with them today I am very torn and saddened. My rheumi and ob stated they don't think I should continue with the pregnancy and they didn't feel good about it. My rheumi's exact words were " you cheated dialysis one time and it's not likely to happen again". My ob told me about a good doctor in town he knew of that specialized in terminating pregnancies. Neither said anything positive. I know they have to inform me of the risk, but where is the humanity? Where was the question of okay, if you want to continue with the pregnancy this is what we need to do. My ob didn't even do an ultrasound, nothing. I couldn't ever wait to get out of the door to cry, I began crying while he was talking to me.
Has anyone else been in this position or known of anyone? Thanks for reading and responding.
04-12-2007, 03:44 PM
Oh, my dear, I am so sorry. I know this is one of the hardest decisions of your life. Have you talked to your nephrologist about whether you could continue treatment during your pregnancy? And do you live anywhere close to a OB who specializes in high-risk pregnancy who would be willing to manage your case? Maybe if you talk to these doctors, they would have more options to offer, and then you could make a decision. It sounds like you are feeling pressured to terminate without any discussion of whether it would be possible for you to continue the pregnancy. I suspect the doctors are thinking of what is in your best interest medically, without considering what the emotional toll is on you. Have you talked about this with your husband?
Sending a big hug your way.
Pretti in Pink
04-12-2007, 03:54 PM
Thanks for the hug I need it. My ob/gyn is a high risk doctor and he was also my doctor when I got sick last time. He also teamed up with a perinatologist but I haven't spoken to her.
My husband has been kind of silent about it because he's scared for me and says he doens't know if he could go through what we went through again. So he just doesn't talk about it and that makes me feel bad as well.
04-12-2007, 07:25 PM
I'm so sorry...I don't have any experience to relate to what you're going through. But, I think I can imagine the pain of such a decision. Press your doctors for some advice on how they would helpo you handle the pregnancy, should you decide NOT to terminate. Then you are armed with the facts you need to make an informed decision. You and your husband will be in my prayers. God has a hand in this...you know that...and God will help you to make the right decision for you and your family. Warm thoughts...prayers...hugs...coming your way!
Pretti in Pink
04-13-2007, 04:55 AM
thank you Jody!
04-13-2007, 09:50 AM
*hugs* I feel for you. This is such an awful decision, I wish you all the strength. You will be in my thoughts and prayers.
04-13-2007, 10:36 AM
Hi Pretti in Pink!
I am SO sorry that you are having to make such a difficult decision, but please know that you are in my thoughts and prayers. May God give you strength and guidance to make your decision.
Sending you an ENORMOUS cyber hug!
Keep well and God bless you, Pretti in Pink!
04-13-2007, 01:27 PM
Hi Again...I wanted to share some information that I found with you...and also to tell you about a great website for kidney issues and diabetes - www.davita.com. That is where I got the following from.
Pregnancy and CKD
While it is uncommon for a woman on dialysis to become pregnant, studies indicated that between 1992 and 2003 from 1% to 7% of patients did. A national Registry of Pregnancy in Dialysis Patients is maintained to track and study these events and outcomes. About 50% of the babies born to women on dialysis survived. There was evidence that longer dialysis time (16-24 hours per week) helped improve infant survival. Many of the babies were born premature, which was attributed to high blood pressure. Many chronic kidney disease patients have high blood pressure, which tends to get worse during pregnancy.
A survey of dialysis units listed by the Health Care Finance Administration regarding pregnancy in dialysis patients showed that infant survival for a woman on dialysis was higher than previously thought. The survey yielded the following results:
During a four-year period two percent of woman in their childbearing years became pregnant (2.4% were hemodialysis patients, 1.1% were peritoneal dialysis patients)
Of those who were on dialysis before they became pregnant, 40.2% (out of 184 pregnancies) of the infants survived
Of those who started dialysis after they became pregnant 73.6% (out of 57 pregnancies) of the infants survived
Infant survival was greater for women who received dialysis more than 20 hours per week
Complications for the women included: high blood pressure in 79% of pregnancies, hypertensive crisis in five women, hematocrit lower than 30 for 93.1% of patients, transfusions for 26% of those treated with erythropoietin and 77% of those not treated and, in two cases, death
Complications for the surviving infants included: premature birth in 84% of women who conceived after beginning dialysis, congenital anomalies in 11 infants and long-term medical problems for 11 infants
I hope this is helpful to you.
Pretti in Pink
04-13-2007, 04:18 PM
thank you so much for taking the time out to gather that information. I appreciate your help and support.
I have an appt. Monday with another ob/gyn, which is next door to my nephrologist and high risk as well. I will keep all posted. Again, thanks!
04-13-2007, 10:09 PM
Hi Pretty in Pink,
I know this is a difficult time for you and you're feeling like you're at the crossroads - but if I may be so bold - to say this to you. Medicine has come such a long way and doctors can monitor high-risk pregnancies better than they ever have before. My heart says choose LIFE, I know God would choose LIFE...and I would be willing to bet on the next sunrise - that you will be a lot more at peace about all of this when you find a set of doctors that are willing to work together as a team and help keep you and your precious child safe through these next few months.
Life isn't easy, and these are decisions noone wants to be forced with - however, I would like you to know that we have prayer warriors up here that will keep you, your baby and your family's well-being prayed up in God's Hands. If your doctors are willing to help you monitor these next few months; I have a feeling this new life that breathes within you now - will be yet another wonderful miracle for you to love and nurture.
My thoughts and prayers will be with you and your family. Stay safe, stay informed, pray...and if you don't pray - allow us to pray for you.
Thanks for sharing with us - we want you to be safe, be healthy, be happy and most of all to be at peace with the decisions you make.
Pretti in Pink
04-14-2007, 07:50 AM
thank you for such uplifting words of encouragement. You really put a smile on my face :D. Yes, I do pray and know that prayer is what has gotten me to the point I am at today, regarding my improved health. I appreciate your prayers for us and will definetly keep you updated.
04-14-2007, 09:01 AM
Hi Pretti -
I just wanted you to know that I'm thinking of you and support you in whatever decision you make. I hope you have some great friends that can give you the physical hugs that we here can't get across the internet. Having support is so important during difficult times in life. Thanks for coming to us - I hope we can be comforting to you through whatever may come.
04-15-2007, 10:43 AM
My heart and my prayers go out to you and your husband. You are faced with one of the most difficult decisions in life, one that fortunately I have never had to make. Whatever decision you make you need to be able to live with the consequences. To say upfront, I have always been a believer that woman should have the choice weather or not to terminate a pregnancy. I honestly don't know if I were in your place what decision I would make but I pray that you will find one and be comfortable with it.
Although I am a Christian myself I am not sure I agree with God allowed the pregnancy. Pregnancy is a natural outcome of unprotected sex and God in his infinite wisdom has given us all "free will". Sometime our free will gets us into difficult situations which ultimately cause us much pain and suffering.
Remember, there are three of you in this decision Jodi, you and your husband and your other child. Your other child is not old enough to be a voting member but none the less needs to be considered in the decision. I am reading between the lines here but it sounds like your OB and your Rheumatologist are more concerned about your health and survival that the outcome for your unborn child. You really need to have all the facts regarding both? It sounds like their concerns are warranted.
What are your risks? do they mean a lifetime of dialysis or does this include risking your life by going through with this pregnancy? And if it means, your life, and you are willing to risk that, how would your husband feel about losing you and what impact on your other child growing up without a mother?
What would be the risks to your unborn child if you have complications (sounds like you did before)?
I am aware my comments about "choice", may not make me popular on this board, but I really believe that no one person has the right to decide for another what they should or shouldn't do with their body and their health. I encourage you to not make decisions on what others may or may not do in your situation.
I just want to encourage you Jodi to carefully gather all the information about the pros's and con's of your situation and may God grant you the wisdom and the courage to make the decision right for you and have peace with that decision. God will always be with you.
That will be my prayer for you Jodi. You and your family.......... Your friend in support...beautifulbeluga
Pretti in Pink
04-15-2007, 11:38 AM
thank you for your insight and encouragement. BTW, it's Monica not Jodi. I believe Jodi may have replied to one of the posting (how funny). It's also funny what you said about GOD and free will because I told my husband that GOD doesn't make mistakes and he replied with, "yeah but we do."
I have thought about everything that you have mentioned and yes, the doctors main concern is my health and kidneys. One thing that I am also taking into affect is when I was diagnosed with Lupus I was about 8 weeks pregnant and my rheumi at that time said I didn't have to take the prednisone everday unless I began to hurt again so from the end of June until Aug 20th, I didn't not take any prednisone or anything else for that matter for my lupus symptoms other than tylenol. Once I went to my perinatologist she said that I should have been taking it everyday.
Regardless to what people on the board or anyone else feel about your comments and viewpoint it is to be respected and that I do. On that note, what some people that may have a problem with it should also realize is that one sin is no bigger that the other in GOD's eyes it's society that has categorized them. So again, thanks for you input. I am going to see what the ob/gyn says tomorrow. Will keep you posted.
04-15-2007, 05:53 PM
Just wanted you to know you will be in my heart and my prayers tomorrow. Whatever you find out and whatever you and your husband decide, please know that you have the absolute support and love of everyone here.
04-16-2007, 12:12 AM
I'll keep you in my thoughts tomorrow (today, actually) Monica. The doctors can provide you information. But, only you and your husband will know what decision is best for your family. We're here for you no matter what that decision is. God bless.
Pretti in Pink
04-29-2007, 01:23 PM
It's been awhile since i've been here but alot has happened. When I went to a different doctor she told me that I had +4 protein in my urine, which a couple of weeks prior it was only +2 so that let me know that I wasn't going to do well with the pregnancy and my life would be in jeopardy again. A the recommendation of the new doctors and all of the others I decided to terminate, which was a REAL heartbreaker but I have to also think about my son I am raising.
So I went to the dr. that my ob/gyn referred me to and he wanted to clearance letter from my nephrologist stating it was okay to have the surgery and use the drugs that they would be using. Initially my nephrologist stated okay and then the day i was to go in for my consult, he said he wanted to get hematology, rheumi, and my other docs okay first. I asked my rheumi to write the clearance letter and he said he couldn't give me clearance, referred me to my PCP. So basically everyone stated the urgency in me terminating but no one wanted to take the responsibility of giving the okay. THis went on for a week. So, the terminated DR. stated he felt like he shouldn't do the procedue in his office and he doesn't do it at the hospitals so he wouldn't be able to do it.
Meanwhile, my blood count was low and I had to go see my hematologist. She knew what was going on because my nephrologist called all of my doctros. She said she didn't see what the big deal was, she just wanted me to have a transfusion and then she would clear me to have the procedure. So i had my transfusion, she called that doctor back and then he agreed to do the procedure. I had the procedure done on Thursday.
I have felt like i was all alone in all of this because my husband feels like if he doesn't talk about it, it doesn't exist. His excuse for not talking about it is that it's just too hard and everything is all ready stressful. So, I didn't have his support in any of it except for when he took me to have the procedure.
I just wanted to check in and say thanks again for all of the support and prayers.
04-29-2007, 01:42 PM
Oh, sweetie, I am so sorry. I know you wanted to find a way to avoid this, but you had to think of what was best for your family, especially your son. I'm especially sorry that your doctors added to your burden by keeping you in limbo for so long. I don't think most men are good at dealing with grief; they think they have to be tough and strong and not show how much they are hurting. Maybe some counseling might be helpful to let the two of you talk about things in a "safe" situation. But if things get overwhelming, please know that your "family" is here anytime you need to talk about things. Hugs and prayers being sent your way.
04-29-2007, 01:55 PM
I have been thinking of you. What a difficult thing to go through and I'm so sorry for the lack of organization of your doctors and support from your husband. Anyone dealing with such a difficult decision deseves as much support as possible. I hope that you know we are all here for you.
Pretti in Pink
04-29-2007, 03:46 PM
thank you marycain and missy. I do feel the love, support and encouragement cyberly from you guys and it brings a smile to my face. What a blessing it is to have this site and be associated with such loving people.
My husband is really a sweet person, it's just that he doesn't communicate well, especially when it comes to tough situations like this. He looks to me to guide him through when sometime I look to him for support. But despite his lack of communicating during tough times, i always tell him that i appreciate him because we have been through alot in the 1 year we've been married (yep, we were newleyweds-just made a year this month) and he is still here.
Again, thanks for the love and support. I will pray that GOD continue to bless your lives.
04-30-2007, 10:25 AM
hey dearie! you've beenonmy mind, and ive been prayin for you.CONGRATS ON YOUR FIRST YEAR, AND I WIsH YOU SO MANY MORE! yes this is tough one, and i wish i had something magical to say you, but really, we have so many wonderfyul people here with such smart and warm things they say from there heart.
men in general have communication issues :lol: mine is the same way! and as with so many other wives and partners out there, i spend most of my time interpreting his grunts, chirps, and motions-heck, we should have a dregree in a foreign language, MANSPEAK :roll: , but im sure you can feel him. trust that.
be well, and keep us posted :)
Pretti in Pink
04-30-2007, 12:27 PM
you're right, we should make a new language and publish it for newlweds! :D
04-30-2007, 01:30 PM
Oh, Pretti in Pink, I'm so sorry...
Please just know that you and your husband are in my prayers...
I am sending you an ENORMOUS cyber hug!
Please know that we are all here for you whenever you need us!
05-01-2007, 09:34 PM
I completely understand how you can feel so torn....however, remember - those people don't have to live with the decision at the end of the day. They go home....and it's a blip of their radar for the day.
I would urge you to listen to your heart, your conscience, and you will never regret it. When you second guess an initial "gut feeling"....it usually shows us we were better off sticking with our initial "truth". I'm a big believer in "If God leads you to it....He can surely get you through it."
As far as interpreting....I was never very good at it, myself. Listen to what your heart knows is best. Give life a chance and your blessings will more than you could ever dream.
I will keep you and your husband in my prayers. Stay strong and hold on to each other....it's what matters most!!
05-02-2007, 03:13 AM
Oh, Pretti, I'm so sorry. This had to be tough for you - for both of you. Browneyedgirl is right - don't second guess yourself. From what you described, you had good medical advice and made the right decision for your young family.
Yes, men are not always good communicators (hmmmm...maybe not EVER really good communicators.) :roll: So that means we have to be even better communicators - including some mind reading from time to time. I'll bet you're already able to do some of that, even after just one year!
Take good care of yourself, Pretti, and focus on the positives in your life. We're here for you, as always
05-02-2007, 06:14 AM
Hi Pretti, I am so sorry to hear of how things turned out for you. As hard as it was to make the decision, you made the right one for you. I wish there was some magic words I could say or advise I could give that would make a world of difference to you, but the only thing I can come up with is just to hang on to your loved ones and remember why you made the decision the way you did. There will be times when it will hurt, very bad, and you can't second guess yourself or let regret creep in. Look at your beautiful son and remember. I wasn't forced to make the same decision you were, but I did place a child for adoption and sometimes I have to remind myself why I made the choices I made. I hope this helps.
I an understand the issues with trying to communicate with a husband! *giggles* We've been married 2 years on May 14th, and we still have issues of what one said and what the other one heard.
Pretti in Pink
05-02-2007, 06:10 PM
kokopelli- thanks for your support and sharing such a personal story with me.
mnjodette, browneyedgirl53- thanks to you as well. I feel comfortable in my decision but I will remember what all of you guys' words of wisdom.
05-03-2007, 06:52 AM
I am so sorry for all you are going through. When I read your story and some of the others on here my issues seem so insignificant. I could not imagine dealing with such. I hope you and your family will be ok and my prayers are with you all!
Pretti in Pink
05-03-2007, 07:15 AM
thank you so much- but you know all of us don't have to look too far to find someone who is having things worse than we are and that is what I always tell myself when I feel things are so terrible for me- and that is how I remind myself how blessed I am.