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Konni's story (loss, grief, mc ment)

by Konni (no login)

 
It has been a long, hard road. I get so emotional every time I think about this!

After a 2nd trimester loss in my 20s, years of not trying, and a 1st trimester loss at 38 when we decided to try again, I got pg naturally at 39. It was a scary first trimester -- memories of the m/c the year before, early spotting, a suspected septum in my uterus, fibroids, gestational diabetes -- the 2nd trimester went really well. But I woke up in the night feeling constipated at 28w4d and didn't realize for a long time that I was bleeding and having cramps -- labor! -- not constipation! So when I did figure it out of course we got to the hospital as fast as possible, but I was 90% effaced, and mag sulfate and terbutiline couldn't stop me. the next morning I had a c-s and my daughter, Olivia, was born.

Olivia went to the NICU of course and struggled for 3 weeks. She needed a ventilator to breathe, medications for PDA, and she was too young to nurse, so I spent 7 hours/day trying to pump milk, but my milk didn't come in for nearly 3 weeks. She also had low-grade bleeding in the brain, putting her at risk for learning delays and cerebral palsy. She developed a staff infection at 2.5 weeks -- it cleared up with antibiotics -- but at 18d, she began to crash and only after she died did we learn that she'd had a much more serious infection develop.

This was the worst time of my life. I wanted to die, and the only thing that kept me going was the belief that another baby needed me to live. Although I was nearly 40, we had no clue yet that it would be difficult to conceive again -- only that I would have difficulty getting to term. My ob insisted that I wait a few months for the fibroids to subside and in the meantime, we learned that I had a precancerous endometrial condition called endometrial hyperplasia. My ob, a real go-getter (she said sarcastically) waited and watched and waited and finally did a d&c and then decided I would have trouble ttc, so he sent me to an re for clomid.

This re, without looking at my medical history or performing any examinations, without telling me about the side effects or risks of clomid at 40, just handed me a prescription like it was candy. This was Southeastern Fertility Center in Mt. Pleasant, SC, and I DO NOT recommend them to anybody!!! They also make you think you must buy your meds from them, and they mark them up 60% over Portland Pharmacy and Freedom Drug's costs!

I had 2 clomid cycles, didn't conceive, and then we got really serious about learning about IF and went to the library. I learned why clomid was a bad choice for me, and I learned about the CDC SART website with success % for clinics and guess what -- SEFC didn't even do any ivf's on women over 40! So then I changed to a clinic in Charlotte, NC -- REACH -- which I also do not recommend, although I don't feel as strongly about them.

Because of the risk of Down's and for me, premature labor, I didn't want to transfer many embies, so I was referred to St. Barnabas so I could have pgd. My NOv. fsh was great -- 7 -- but I had laparoscopy, and after that, it doubled. St. Barnabas showed me the door.

I was desperate, so I returned to REACH. I didn't understand that their 50% cancellation rate was an important clue about their tendency to cycle women and then cancel. They expected me to have 10 mature eggs or else cancel! That's what happened, of course -- after 9 months of tests, laparoscopy, myomectomy (which I don't recommend) more tests, and worst of all, wasted time. During this time I also had a consultation with Rhonda Levy, which for us was a waste of time and money. She didn't tell us anything we could learn from books and the internet, and although she promised to get me into clinics sooner than I could myself, whenever I asked her to do this, she always told me to call them myself!

When my cycle was canceled and I'd wasted $6k of drugs, I began to search the internet. I hadn't done this before because it was so overwhelming. I searched Google on "high fsh" and I got over 2,000 hits. I looked at every single one. It took me a week of looking all day and night, every day. I found the high fsh bulletin boards, INCIID, and M-VED and Fortility and began subscribing. I learned about fsh-friendly clinics and I began to study them. I looked at the sizes of their programs, the ages of women they treated, their success rates, protocols, and I had consultations. I figured a $200 phone consultation was a cheap way to screen a clinic, compared to wasting $6k on meds and being cancelled. I also learned about Farmacia Cerati in Italy and ordered my meds from them at a fraction of the cost.

I learned about baby aspirin, herbs, and began taking wheatgrass pills, red clover, evening primrose oil caps, vitex, alfalfa, l-arginine, and a number of other supplements which I forget now -- they're all at the parentsplace website, including when to take what.

I finally settled on Huntington Reproductive Center in LA. They were cheaper and more flexible than Reproductive Partners, and more personalized and better organized than Cooper Center for IVF in NJ, and they agreed to do ZIFT, which I hoped would be kinder to my old eggs. RP only wanted to do GIFT, but we needed ICSI. Wilcox let me do a fairly high stim protocol of bcp, clomid, 1/2 fsh and 1/2 LH. I also used l-arginine, baby aspirin and prednisone. I got 8 follies, 6 eggs fertilized with icsi, 4 normally, and we did ZIFT.

HRC treated me wonderfully, letting me begin my cycle at home, monitoring locally, and then flying out. My problem in retrospect may have been not building my lining soon enough. IT was barely 7 by the day of transfer. We used estrace and viagra, but it just wasn't enough. I had a chemical pg with a beta of 72, and then I began waiting for AF and planning my last cycle before signing up for DE. I didn't even test my fsh b/c Wilcox said there was no point with residual drugs still circulating in my system.

I used my Clearplan Easy FM that cycle and we only BD'd 2x. I O'd a week late, as Wilcox predicted. I didn't have the energy to do all the supplements, so I just did the baby aspirin, estrace and prednisone to O, progesterone suppositories after O, and prenatals.

I had no cramps that month but fresh blood right on time, so I went in for cd2 testing and I got a call -- all my hormone levels were off! "Menopause," I thought! but then the nurse said she was going to run a beta! So I was shocked and sat around the house for 45 minutes and finally remembered my AIM sticks! I got them out, peed into a clean yogurt cup, dipped the stick, and got the faintest positive, but my beta was 345!

By now I was 41.5yo. I called Check to get monitoring, and he prescribed pio, which i had to 17w. I had cvs in Philly, with a scary preliminary result and a good final result, but amnio was recommended too. I had a cerclage at 15w and had to convince the ob that the risk of a bad amnio was less than the risk of no cerclage.

When I was 20w with my DS, we went on a cruise, and I thought I had cramps near the end, so I drank tons of water and elevated the foot of my bed and lay on my left side until the cramps were over. At 26w, I began home uterine monitoring, which showed I was having 5 ctx/hour, so I was admitted to L&D and began mag. I came home with a terbutiline pump and remained on bedrest until 36w. I had one more hospitalization for PTL. I had GD and needed insulin 4x day. I also had terrible carpal tunnel, and itching from hell! (not PUPPPS -- more likely cholestasis)

Keiki was delivered by sched. c-s at 37w 1d, and i had begun labor within hours of stopping brethine. The c-s and recovery were terrific. Nursing was difficult, but 7m later we're still nursing!

and we're thinking of DE in '04.



Posted on Jan 2, 2003, 8:45 AM
from IP address 66.57.164.89


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  1. What I forgot to say. Konni, Jan 2, 2003, 8:59 AM
    1. Shoot! More about REACH and SEFC. Konni, Jan 2, 2003, 12:59 PM
  2. 40&TTC#1. Sandra, Jan 4, 2003, 2:44 PM
    1. Sandra, are you still around?. Konni, Oct 28, 2003, 12:38 PM

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