View Full Version : Being a MOM is not in my cards .....This is hard to take!

02-14-2007, 06:27 PM
Hello Everyone,
I was diagnosed with SLE/Scleroderma along with Raynaud's Disease in 2003 and my condition have been up and down it is not only frustrating but also depressing. Last summer, they also confirmed my Lupus involves kidney problems and I was officially diagnosed with Phase IV Diffuse Nephritis. For the past 3-4 years I've been prescribed various medications from Vioxx, Voltaren, Prednisone, Methotrexate, Imuran, Adalat, Novo-Prazicine, Coumadin.
Two days ago I was officially diagnosed with Pulmonary Hypertension. WOW. I have another item to add to my (already long list) of medical conditions. WOW.
The same day I was officially told it would not be a good idea for me to get pregnant. I was told although my condition is stable and would (hopefully) remain stable as long as I keep up with all my meds. I was also told my condition would not get much better than what it is now and getting pregnant would be a major risk (mostly to me) it could cause my life.
Has anyone of you been told by one your doctors not to consider pregnancy because everything involving your Lupus disease could possibly cause major complications in your system and could go down to whether you live or die? I find all this a bit harsh...but maybe I'm the one on denial. Any comments?

02-14-2007, 06:37 PM
I was also told that when I was diagnosed last June. I already have two children, and they are older, 9 and 11, but it was hard to hear that I was not going to be having any more. I am only 33. I understand that it is probably harder if you do not have any children already. I was also upset because I explained that we were considering adopting and both my primary doctor and my rheumy advised against it because they think that the stress of another child, even without the pregnancy, would be too much for me. I am still very sad about it.

I am sorry that this is happening for you. Please feel free to talk to me anytime.

02-14-2007, 09:03 PM
I'm so sorry - it's hard when you want children and can't have them. I always wanted a big family - although I do have children, not as many as I intended to because my health deteriorated with each pregnancy. But if your health remains stable then adoption might be an option down the road? Unfortunately with pulmonary hypertension the physical stress of pregnancy would put you at very high risk - your doctors are not exaggerating that you could die from it - this is not just them being cautious. I'm sorry - I know that isn't what you wanted to hear - it's a hard adjustment to make for you and your husband both.

02-15-2007, 08:36 AM
I know how you feel - I'm 29 and I also have Lupus Nephritis Type 4, and things were pretty bad 3 years ago, but now after all the meds, things are better, and I am getting off most of my meds. I had made the decision not to try to get pregnant because I feared for my kidneys.

My docs have been hesitant to say I shouldn't get pregnant, and want to leave that decision to me, but also are supportive of adopting, if I choose to do that.

My husband and I have gone through mourning with dealing with Lupus, and also with dealing with most likely not having biological kids. Even though I have always wanted to adopt, feeling like your choices have been taken away from you is a horrible feeling.

I hope that the support you receive here can help you in dealing with this hard situation.

02-15-2007, 08:37 AM
I also have a question - what is the difference between pulmonary hypertension and high blood pressure?

02-15-2007, 09:05 AM
Pulmonary hypertention is abnormally high blood pressure in the arteries that supply blood to the lungs. The blood pressure measured by the cuff on your arm isn't directly related to the pressure in your lungs. The blood vessels that supply the lungs constrict and their walls thicken, so they can't carry as much blood, so it backs up. The heart has to work harder and harder trying to force the blood through - and less blood can get through the lungs to pick up oxygen - so people with PHT feel tired, weak and dizzy.

If the problem develops all by itself, it is called primary pulmonary hypertension - if it is related to another medical condition like lupus, it is called secondary pulmonary hypertension. It is always a serious medical condition and requires medical treatment - which might include supplemental oxygen, agents to help the heart pump better, diuretics, anticoagulants (blood thinners), and medications to lower the PHT. Sometimes lung transplants also are done.

Pregnancy and delivery produce dramatic changes in lung pressure that can endanger the life of a woman with PHT - plus the women's lungs may not provide enough oxygen to supply her own needs and that of the developing fetus, so it is risky for the baby too in terms of normal development. Because of that, many doctors recommend that a woman with severe PHT be surgically sterilized to avoid any possibility of pregnancy. Women with PHT must avoid oral contraceptives or hormonally based contraceptives because they aggravate the existing pulmonary hypertension - so tubal ligation is usually the safest effective alternative. In this case, it is not an issue of the doctors just being cautious - pregnancy is a life-threatening condition in a woman with PHT and there is just no safe way to manage it. I am very sorry for the situation, but the doctors are absolutely correct that you could very easily die from a pregnancy. I wish I could tell you something different, but I think false hope would be worse. But with effective treatment, if your other conditions stay stable. hopefully you will be able to adopt at some point down the road - I know how much you want a child and I hope that is possible for you through adoption.

02-15-2007, 10:58 AM
I know people who have been told this. I was dxed after having my twins in 2000. I can tell you that my health has SUCKED since then and I think the pregnancy was WAY too hard on my body.

There are other options out there. I dealt with infertility for 3 years. I know many couples who have used surrogates or adoption. Don't risk your health.

02-15-2007, 10:49 PM
It's so nice to hear everyone's perspectives. Thanks, Milagro, for your honesty. Sometimes, the issue is sugar-coated, due to the sensitive nature.

Marycain, thanks for the info. I had no idea about this horrible condition. I have had hypertension because of my kidneys and continue on bp meds, but this sounds horrible. Does it affect your ability to breathe? I'm wondering how this is diagnosed.

02-16-2007, 07:37 AM
Missy, yes, it can definitely cause difficulty in breathing - sometimes it starts out slowly and people feel tired with any type of exertion - then they start feeling short of breath, dizzy, and may possibly have unexplained fainting spells - if the disease continues to progress it can cause the lips and skin to turn bluish because there isn't enough oxygen in the blood, and cause angina-like chest pains. An accurate diagnosis usually requires a right heart cardiac catheterization to measure the pressure in the pulmonary artery. Normal average ("mean") pulmonary artery pressure is about 14 mm Hg at rest. In patients with pulmonary hypertension, the average blood pressure in the pulmonary artery is greater than 25 mm Hg at rest and greater than 30 mm Hg during exercise.

Even though primary pulmonary hypertension (the type that occurs without a known cause) is rare, it's important for women to know about it because it primarily strikes women in the 20 to 40 age group. Women who have primary Reynauds disease seem more likely to develop pulmonary hypertension than others. It has also been linked to the use of appetite suppressants - remember fen-phen? Secondary pulmonary hypertension can occur with some autoimmune diseases and congenital heart conditions.

Like lupus - diagnosis, treatment and survival rates have improved enormously for people with pulmonary hypertension. But it's really important to get the best medical care possible.

April_bride - in case your doctor didn't mention it, it's really important for you to tell your dentist that you have pulmonary hypertension - you will need antibiotics before most dental procedures to keep you from developing endocarditis. I know it's hard when doctors throw a life-changing diagnosis at you to take everything in - just wanted to remind you about this because it is so important.

02-16-2007, 08:36 PM
I can certainly relate to this. For as long as I can remember I have always dreamed of being a mother. It was what I wanted to be most when I grew up. When I was 23 I was getting married and I stopped taking my birth control pills. Suddenly I stopped getting periods and started getting hot flashes. I went to the doctor and was diagnosed with premature ovarian failure due to the Lupus. Basically I was in menopause.

It has been one of the hardest things I could have imagined to deal with. It was devastating! I decided that we could adopt and that helped me get through it. I saw an Oprah show about the baby girls in China that need families so badly and I could think of nothing else but adopting one of those precious girls.

Now, a few years later I have had to pretty much resolve myself to adoption not really being an option either. I just don't think I could give a child the kind of mother they deserve. I am far too sick far too often, and I worry about if they were to lose their mother young. I also worry that they wouldn't get the kind of father they deserve either. My husband works so hard and then when I am sick he has to take care of me and the house. It would just not be fair to him or the child to add a child into the mix.

It has taken 5 years but I am getting to the point where I am not happy about it, but I am ok with it. I honestly believe that things happen for a reason and God knows best.

02-17-2007, 12:11 AM
Thank you everyone for sharing your experiences and perspective. I was truly devastated when I was told the news on Monday, but the more I talk about it I start to understand and see the whole picture. I am also very grateful to be part of this forum - everyone is so open and supportive.

MaryCain, thanks for the information you provided about Pulmonary Hypertension - I will use it when trying to inform people what I have so they understand better.

Today, I saw my Nephrologist and she told me my Lupus is "active". Though my kidneys are still functioning, its still leaking alot of proteinuria. She upt my Cellcept to 3000 mg and added another medication, Altase, and prescribed Lipitor for my high cholesterol. She said I'd need to do some more bloodtests in 2 weeks. If the levels of proteinuria does not goes down she'll put me on a more aggressive immunosuppressants.

Next week, I have appointments both with my Rheumatologist and Respiratologists - I'll just have to see what they are going to say.

02-17-2007, 09:00 AM
You will certainly be in my thoughts and prayers - I hope the added cellcept gets the kidney involvement under control. I know you have taken some hard blows emotionally - you are showing a lot of strength and courage in dealing with this.

02-20-2007, 08:36 AM
April_bride -

I will be thinking of you and hoping that Cellcept does the trick.

This weekend I went to my hometown to my best friend's baby shower. She is due in two weeks. Another close friend just told me she is pregnant now, too. Did I mention my other close friend had a baby in September? This has been a bit trying for me and it's hard not to be jealous, while at the same time happy for them. It's just amazing at this age how so much is about babies....... It's so nice to come here and have people that understand, though. Thanks, all of you.

02-23-2007, 01:20 PM
Hi Everyone

I am SO sorry that so many of you have been unable to have children, despite having really wanted to raise them. :cry: I'm sure that all of you would have made BRILLIANT mothers if you were able to have children and I can understand how hard this must be for you to accept and to deal with.

However, it is important to remember that your health really does comes first, as hard as this very often is to accept and to uphold, and that it really isn't worth having a baby, but having put your life at risk and then being too sick to care for the child...

April_Bride, I sincerely hope that your meds will keep your Lupus and your Pulmonary Hypertension under control. Please let us know how you get on.

Keep well and God bless!

02-26-2007, 08:42 AM
And keep in mind ladies there are other ways to have children. Adoption and fostering are two options. I have a friend with lupus who was able to have one baby and adopted a second.

I struggled thru years of infertility treatments and no one ever knew why I was having so much trouble. Eventually we chalked it up endometriosis, but I always suspected it was something more. Now I have been diagnosed with arthritis with a high positive ANA and my rhemie suspects it's lupus. My grandmother had lupus. She also only had one child.

It's a tough road ladies, but I am happy to support anyone dealing with this issue. Hugs to you all.