catastrophic trauma & emergency hyst - anyone had similar? (loss of babies mentioned)

I am 39 years old, married for one year. One year ago, I was a healthy, outgoing, athletic, professor of Biology. My husband and I started pursuing having children in April of '05.

I guess there is a sort of epidemic of male-factor infertility in some of the major US cities, and it turns out that my husband is one of the many men afflicted with this. We were told that there was absolutely no way I would get pregnant without In Vitro Fertilization and a process called ICSI, where they inject a single sperm cell into a single egg cell to ensure fertilization. My FSH levels were 5.6, so we were told that we had an excellent chance of success.

Going by statistics, it made sense that a woman my age should have 4 embryos transferred. I had a nagging feeling that 4 was too many for me because of my fibroid-free uterus and my FSH levels, but I figured that that doctor knew what he was doing. So we had 4 healthy embryos transferred.

I got pregnant on the first IVF cycle. The doctor originally found 2 gestation sacks, but a couple weeks later, I miscarried a third and we found the fourth lodged in my cervix (a life threatening condition). In an effort to save the two well-placed babies, we opted to "reduce" the cervical pregnancy by injecting the gestation sack with a KCl solution to stop the heart. They went in through the side of my cervix with a spinal needle three times without anesthetic. It was so painful, but after a week it looked as though it was the thing to do. The twins were fine, and the cervical pregnancy was being re-absorbed into my body.

The next week, I hemmorhaged so severely that I had two blood transfusions, and spent a week in the hospital. The cervical pregnancy, while no longer viable, still ruptured my cervical blood vessels causing me to bleed out of control. Anesthesiologists were prepared to inject the drugs to perform surgery on me when I suddenly stopped bleeding. They called off the surgery and I recovered.

For 6 more weeks I was on bed rest, and the cervical pregnancy was all be completely absorbed. The twins were growing really well, and we had passed our initial test to rule out Down's syndrome. I was looking and feeling very pregnant. I was 15 weeks pregnant, and still quite nauseated, but so relieved that I was in the clear.

Then, I came down with what we thought was a flu. Of course, this sort of thing comes up when your doctor has someone standing in for her and it is on the weekend. I called in three days consecutively to say that I was experiencing flu symptoms, but that my fever racheted upward to a new high each day.

On Tuesday, 20 September, my doctor admitted me into the hospital. The twins were doing well, and we heard the heart beats for the first time. We were so happy! That night, though, it all turned around. I don't know exactly the sequence of what happened, but my fever went up to a high of 107.9F, and I started to lose the babies. The doctors made me deliver them, and then I went into a coma.

The next day, I was still bleeding so profusely that my doctor did an trans-abdominal hysterectomy, saving my ovaries. I had turned my immune response on myself. I went into a medical condition they call "DIC" and "ARDS". Kidney failure, liver failure, respiratory failure. All of my vital organs shut down.

I was in a coma for 5 days, but they tell me that I had 24 hour kidney dialysis for a while, trying to decrease my creatinine from a high of 30, down to the normal range of 0.7 - 2.1 (It is still not there). I woke up with a machine breathing for me, and kidney dialysis ports. I was on a feeding tube and of course the urine catheter. I spent a total of 2.5 weeks in the ICU, and another 10 days in standard care in the hospital. I had a total of 35 blood transfusions during this stay.

My incision took a very long time to heal because of my systems failures, and my kidney dialysis (and subsequent hypertension) continued for weeks after I left the hospital. They say I am very lucky to be alive. I feel that most of the time.

So far, the emotional pain of the loss of my babies, my uterus, and any chance of having babies peaks up above the surface for me only occasionally. The physical healing has trumped any emotional healing that I need to take care of. So far, at least.

Some people around me don't know how to behave toward me. It seems so sad to me that for some people, the open-hearted supportive loving way is the least likely. Some have rejected me because they "don't want the stress in their lives". My brother and pregnant sister-in-law are at the top of the list here. Wow and ouch.

My husband and I have had a pretty difficult time of it. This is such a loaded situation that we will be working on this for a long time to come. Ugh.

I have read through many of the postings in the sexual dysfunction section. As with the women there, my orgasms are pathetic in comparison to those before, and I just don't have any libido. Another challenge for me and my very physical husband. I am rageful and sad.

Contrary to what some women have said, I don't feel duped by my doctors at all. I trust that they did what they could to save me as an intact woman. My hysterectomy was a last resort. I am angry, but not at anyone in particular. The whole situation just *****!

Of course there are more details, but this helps a reader get the picture. I know that my case is exceptionally rare. Is there anyone out there who has had something similar? It would be so nice to have someone in my life who really gets it. Not that I would wish this on anyone.

thanks, A

Hello, A and

We're happy you joined the Hystersisters community, although I am so sorry for the circumstances that led you here. Please accept my condolences for your loss.

I moved your post out of the "Tell Your Hyst-Story" forum, because that is a "non-reply" board, and there are many members here who would like to reply to your post and offer their support.

I'm sending many heartfelt s to you.

Boy, did I feel for you when I read this post! I don't know what you're going through, as I've never had that happen. I can only imagine! My thoughts were as I read your story were, thank God for her education and background. At least you have a chance to understand the mechanical aspects of what your body did. But, I can't help but feel after your body heals you will have to deal with the emotion end of it. There's where I felt so choked up reading this. I send my best, warmest heartfelt thoughts your way. L

Good Lord, what an amazing story. In my wildest dreams, I could never imagine going through what you have. You are an incredibly strong woman to even be able to write about the trauma you have suffered.
All I can say is that we are all glad you have found hystersisters. Many other women here have suffered in other ways, and hopefully you can find support and encouragement from others who understand what you are dealing with.
Please stay and keep us posted on your healing!

isewquilts

Mindful1,
I'm sorry for what you have gone through. I may be able to help put you in contact with some people who have been where you are now. Have you visited www.ardsusa.com? It is a website for support post ARDS. I know it is too common for this to happen after child birth, and this is a completely different set of circumstances, but they might be able to help you find the support group you are looking for. The founders are wonderful.
My daughter was intubated for 4 weeks due to ARDS. You can find her story under survior stories and "ARDS kids stories" named "Jessica's Miracle."
I hope you find the support you must need at a time like this. All my prayers are with you.

Kansas

Dear Mindful:

I'm so sorry for your loss. Here is a link to a recent thread with other gals who had emergency hyst associated with pregnancy: https://www.hystersisters.com/vb2/sho...49#post1593349

You may also find support posting in our Aching Hearts forum. I hope your heart feels better soon. I am sending huge cyberhugs

I can't even begin to imagine what you are having to endure or what you went through. You are truly a strong person to have suffered through all that you did and still try to be positive at the same time. I am sorry for the loss of your babies and your uterus. I am sorry that your body had so many problems. The only advice I could possible lend to you is that when you are physically healed please consider going to therapy for the emotional issues that will no doubt surface from the trauma you have endured.

You are in my thoughts and my prayers. I am sending lots of s and your way.

Sincerely and encouragingly,
Mustang30

Dearest Mindful1,
Where can I start to express how sorry I am for you and your husband?. I sure that it is hard on you because of the loss of the children and your ability to carry more. But I'm sure your husband feels terrible because it was because of his inability to have you conceive in the normal way, that you had to face so much trauma at one time. I'm not saying that it was his fault in anyway, but it may be how he feels. I STRONGLY suggest that you go talk to a grief counselor. You and your husband need to talk about it often with each other. Your marriage can be stronger through this.

I have some very dear friends that lost their 2 year old daughter because of an accident. They still have a very hard time communicating the hurt that each feels. Although it was not either of their faults. They would talk to my husband and I, but then cover up their feelings to each other because they didn't want to hurt the other person and they were afraid to cry in front of their spouse. Their marriage is still strong but this is like a wall that has been built up between them. This happened 12 years ago yesterday.

I wish that I could be there to give you a big hug. You will never forget those two precious babies but the hurt will lessen over the years. Never try to hide your hurt, let others minister to you in their own way. I'm sorry to hear about your brother and sister-in-law. They are acting selfish and uncaring, but don't let that imbitter you towards them or the still to be born child.

I'm here to talk if you need to. My e-mail address is on my profile.

May God Keep you wrapped in His arms,
Nancy (LovingWifein86)

HI
Thanks so much for telling your story and I hope it was helpful to you. It sounds like you have lived a nightmare. I can't think of any other word for it and it is obviously still going on to some extent. I really feel for you.
My story is by no means as traumatic although I can relate to a lot of what you said. When I was in my 20,s I was diagnosed with a rare muscle wasting disease, nothing catastrophic, but enough to rock my socks so to speak and stop my sport which I loved and various other things, also affecting my looks. Also enough to stop me being able to have children for genetic reasons. In my thirties I was diagnosed with Hyperthyroidism, I had surgery to remove the thyroid and they 'nicked' the nerve, so for a while it was very worrying as to how much 'voice' I would have left (OK as it turned out), then I got thyroid eye disease which really stuffs up vision and appearance and then I got the fibroids/bleeding/hysterectomy...My point being I can really understand your rage at the loss of what you had and the way of life you had. I absolutely understand that. Sometimes i also felt that noone, nobody could really help, do what i wanted and that sometimes I was very alone with it all. A lot of my family, who I love, have never theless, been pretty hopeless and sometimes downright hurtful. I just don't think people know what to do or how to cope.
On a brighter side, despite it all, the shock and the sense of loss have settled and i am very happy, I don't have children but I work with them, i dont do sport but i can keep reasonably fit and, perhaps most of all I really don't 'sweat the small stuff'.
I wish I could help more, you will feel better with time, therapy does help, or it did for me. You will be in my thoughts.
caffie

Hugs to you, Mindful, your story is certainly a moving one. I know just a bit of what you're feeling. My husband and I did some fertility treatments years ago, not as extensive of yours, and I'm sure I never did conceive. Because his health was not good, we decided that we simply were not meant to have children. Long before I had my TAH, we knew we would not be parents. I have a lot of love in my life even without children, I just have to recognize it when it comes along. Best of luck to you, and thanks for sharing your story.