


| Our Story Jim and Kathy Email Jim and Kathy |
| IN VITRO CYCLES We have undergone the Invitro with ICSI procedure 4 times and have undergone frozen embryo transfer 2 times. For the procedures, the protocol has generally been the same (i.e. the medicine and procedures). On January 10, 2000 we had our consultation with the fertility center, it was at this appointment that we were given the exact protocol fir the upcoming procedures. During these procedures Kathy was given birth control to regulate the menstrual cycle. During the 3rd and 4th cycles and the 2 frozen cycles Kathy refused the birth control and a calendar was set and followed by the fertility center. On day 2/3 of her menstrual cycle blood work was drawn. Another test was done to determine whether the uterus is free of polyps etc. to be sure of a solid hold after the transfer. It was during this test during our 1st cycle that it was discovered Kathy had a septum in the uterus which would need to be removed via laproscoptic surgery. This procedure was performed in a surgical center on 4/5/2001. Also during this appointment Kathy was given a trial transfer where they insert a catheter through the cervix into the uterus to have a “sample” catheter for the day of the transfer. The following is the protocol we underwent for our fresh IVF cycles. Day 10 of cycle---started Lupron -subcutaneous injection -1 time daily in AM. After getting her next menstrual cycle, Kathy started Follistem-subcutaneous injection-1 time daily in PM (this was started on the 3rd day of her cycle). Once on the Follistem, blood work and ultrasounds were performed every 2 days. When the follicles in the ovaries looked ready to the doctors, they scheduled for the day of the retrieval. 72 hours prior to the retrieval Kathy received a HCG injection which releases the follicle from the ovaries. This injection was an intramuscular injection given in the butt. The day of the transfer Jim met with the Urologist at the fertility center several hours prior to the retrieval. Jim underwent an Microsurgical Epididymal Sperm Aspiration (MESA). On the 4th cycle, Jim used a new urologist who removed testicular tissue as well as sperm. (This proved more successful). On all 4 cycles we were advised to and did purchase “backup sperm”, in case any of the aspirations were to prove unsuccessful. During all 4 cycles Jim received no pain medication during his procedures. He was given valum to “take the edge off” and was prescribed pain medication for the days following the procedure. Jim was told to be very gentle with himself for the few days after the aspiration. Kathy went for the retrieval several hours later and her eggs were removed. Some pain medication was given and antibiotics were given as well. Kathy always responded very well to the follistem and never had a retrieval with less than 11 follicles. Follow up medications were prescribed and home we went. This next part was different in all 4 of our cycles. Cycle 1—day 5 transfer (Embryo maturity is 5 days old, then transferred into uterus) Cycle 2—day 4 transfer (Embryo maturity is 4 days old, then transferred into uterus) Cycle 3—day 3 transfer (Embryo maturity is 3 days old, then transferred into uterus) Cycle 4—day 2 transfer (Embryo maturity is 2 days old, then transferred into uterus) It was determined that our embryos stop producing after several days. During each cycle they adjusted this amount of time. Because of this determination they also froze the embryos the day of the transfer instead of waiting to see if they continued to divide. Some cycles proved successful in other ways as well. Cycle 1—had sperm to freeze, but no embryos (opted not to freeze sperm) Cycle 2—had nothing to freeze Cycle 3—had embryos to freeze, but no sperm Cycle 4—had both sperm and embryos to freeze. The embryologist scheduled the transfer based upon the growth of the embryos. On the day of the transfer there were several people present in the room. The embryologist, the ultrasound tech, a nurse, and the doctor performing the transfer. Our 1st & 2nd cycle transfers were not ultrasound guided but the last 2 and both frozen cycles were. After the embryos were transferred Kathy had to lie totally still on her back for 1 hour. (Fritos prior to the transfer was a very bad idea). During all cycles we transferred three embryos. In order to transfer more than two embryos we were required to sign consents stating we would consider selective reduction. Two dates are given the day of the transfer. The 1st date is for blood work to test the progesterone level. The 2nd set of blood work is the beta HCG (pregnancy test). After the transfer in all cases Kathy was given antibiotics, and progesterone which is an intramuscular injection given once daily in the butt. Kathy never got pregnant from a fresh IVF cycle. |

| FROZEN EMBRYO TRANSFERS AND PREGNANCIES During frozen cycles, Kathy didn’t undergo all the pre-surgical meds. The only thing Kathy took prior to the frozen embryo transfer was antibiotics, prenatal vitamins, and estrogen in pill and patch form. The transfers were the same procedure as the fresh cycles. Aftercare included the continuation of the patches and pills and progesterone in both injection form and gel form. We never did get pregnant on fresh cycles, but we did on both frozen cycles. I cannot remember the embryo stages from most of the cycles, however the latest (2nd) pregnancy (currently pregnant 4/2005) we transferred three embryos in stages 4, 5, &6. Our 1st pregnancy in 12/2002 started out as triplets. By the time we were released to the OBGYN at 12 weeks we had lost baby B and baby C. The only child resulting from this pregnancy is our daughter Taylor. Our 2nd pregnancy in 1/2005 is a singleton (currently pregnant as of 5/2005). We were released to the OBGYN at 8 weeks; however Kathy remained on all medications until the 12th week of pregnancy. |
| HOW CYSTIC FIBROSIS ENTERED OUR LIVES AGAIN We have gone through the past several years with no real true knowledge of this disease or its ability to come into our lives with such force. Since the beginning, after the tests were performed Cystic Fibrosis had been a theory of the past. When out daughter was 1 year old, she was diagnosed with juvenile asthma. Because of this and several other symptoms the specialists recommended Taylor have a sweat test due to her father’s “supposed” carrier status of CF. Taylor was sweat tested 4/2005 and it was determined that she DOES NOT have CF. Because of her need for testing, the original results of our parental tests were brought into question. It has since been determined that Jim in fact has CF. He is not a carrier. He has the Delta F508 and R117 H mutations. Not knowing if the sweat test was borderline or not, just knowing that it didn’t indicate CF, it is also not uncommon (according to the genetic counselor) for people with this mutation(R117H) to have a negative sweat test. The only symptom Jim has and probably will have is the original absence of vas deferens. Jim is due to undergo further blood screening and another sweat test on behalf of both his children. Taylor has been set up for further blood testing to determine whether she is a carrier. If it is determined that in fact she is a carrier, she is set up for further testing to determine if hers are symptoms of CF. The new baby will be seen through a high risk specialist who will follow the pregnancy through, until the birth in Oct. 2005. After the baby is born, the baby will be seen at the same facility as Taylor and undergo the same testing. We will continue the cryopreservation on the embryos and sperm at the facility center until this CF thing has totally presented itself and all family members are in care applicable to their situation. |
| DIAGNOSIS In 1999, we were unmarried and looking into our future with children. Because I wasn’t taking birth control and we had been together some 3 years, we went to the gynecologist to pursue the investigation of why we had not yet become pregnant. After a sperm count was done it was determined that we definitely had a male factor infertility issue. We were sent to a local urologist who did an ultrasound and determined that the reason for our male factor infertility was absence of vas deferens. It was at this point we were sent to a more knowledgeable urologist. This urologist confirmed what we already new, and informed us that absence of vas deferens was a trait in persons suffering from Cystic Fibrosis. Knowing how healthy Jim is, we were sure he was wrong, but the doctor ordered a Cystic Fibrosis test anyway. When we went to the local hospital to receive the testing they gave Jim a sweat test. This was not the test ordered by the urologist, so he was sent back to the lab for blood testing. The urologist reported to the fertility center what we were dealing with, “patient is a carrier of Cystic Fibrosis, showing 2 mutations with a negative sweat test”. It was at this point he recommended that Kathy be tested for these mutations. The result of this testing was that Kathy did not have mutations and therefore was not a carrier. The next reporting to the fertility center stated “we recommend genetic counseling due to carrier status”, however we were never told whom to call , and were also informed that because Kathy had no mutations that our chances of having a child with CF was no higher than anyone else. It was at this point that we preceded with our fertility plans as set forth by the fertility center. |
| Jim and Kathy's Miracle Baby |