.
actual Patient Experiences with
                               Infertility Treatments

(Written by actual Patients giving the Patient's Perspective) 

An Introduction to an actual Daily Journal

Below are excerpts of a journal kept by one of my patients. As she put it,” it contains descriptions of what I was going through physically, emotionally, and spiritually. In some cases, strong language was used to diffuse my anger.”

Her journey took her through evaluation, treatment, loss, further treatment, and eventual success. In my opinion, the thoughts expressed in her writings are unusually open, personal, and insightful. She was kind to offer them to help guide every couple. As you read this you will know that you are not alone in your experiences. On behalf of all who read this, and on my own behalf, I want to sincerely thank her for her gift.                  JJStangel, MD

11/25/99

Well I finally got around to writing my thoughts about the #$%@ miscarriage. I am hoping that this stream of consciousness will help me move on and enjoy life again. I guess I want to know why God would do something like this to us. Things have always worked out for both of us in school, jobs, family, sports and friends, etc., which has made this even harder. I am upset that Scott is not going to be a father in May. The thing I looked forward to most was to see him hold our baby and get that expression on his face. The one he had at our wedding; the same one he makes when he holds other babies. I know I will see that look again soon.

I feel very dead-ended. Going to work is hard because I was eager to be home with a baby, return to work part-time and not have it be such a priority in life. I really want to spend more time at home. And what ever happened to my only goal in life which was to work on Long Island as opposed to commuting three hours per day to NYC? Now I am stuck because I can't start another job and get pregnant. It's not that I am unhappy at work. I love my job, the people I work with, the fact that I am autonomous and do not have to answer to anyone. I can do whatever projects I want, etc. I probably will stay part-time at my current job and be very happy. I am just in a rut where I expected a huge life change in May and now it is not happening.

How am I going to be when my best friend has her baby? I am so happy for them but it will be so close to when our baby was due that if I am not pregnant, I think it will be very hard.

My mother has been very good during this but I know how upset she is to see me upset. She really helped me a lot and came over a lot of times when I was upset. She also talked me through a lot of upset over the phone when I was at work. I want her to be a grandmother so badly. In the beginning I was upset whenever I talked to someone who cared about me because I knew they were so upset for me (some even cried). Then, for the following month I was manic or bipolar or whatever the hell it is called. I was depressed one instance and happy the next--off and on, off and on. And I could not find a rhythm to it although I was searching for one desperately. I went to Denver on a business trip and being in a different setting helped my moods. Then, my office was relocated. This was the best. I no longer had to go to the same dreary office that I worked in for five years. The change was perfect timing. Now I have a new routine, and a new, bright office. Since I have been in the new office I have only been upset once and that was because I saw that a neighbor had a baby and they had a big stork-announcement-thing on their lawn. I want one of those big stork things on my lawn. In my mind, I keep thinking, “you will, you will” but I don't feel that I can come out and say it.

The holidays are coming and I don't know whether I see them as a dead end or what. I think I am going to be upset because I thought last year was going to be the last Christmas where kids were not in the picture. I thought about how great it would be to talk with our families about how amazing the next Christmas would be with a baby around. Now there is nothing like that and I am bitter about it. Christmas is such a great, happy time for me and I know my family counts on me to be happy. I just do not know how I will be this year. I know it will be very hard for me. I don't even want to think about new years. Well, I think that is enough bitching and moaning for one night. Who knows if I will ever get the motivation to sit down and do this again. But if I do, I hope I am feeling better. Its weird because its like I am saying I am going to spend this time doing this. I am planning to take time to be upset. But I think a planned being upset is better for me than losing it at work or somewhere else. Anyway, I feel better that I got some of my feelings out. I wonder if I will ever read this thing.

October 12, 1998

Well, it is almost a year later I can't believe that I am in the same #&@ boat.

November 10, 1998 (Day 32)

On Saturday, we found out I was pregnant again, for the fourth time. We were very happy (and nervous) so we decided to take it one day at a time.

On Monday, we had the blood test, which confirmed the pregnancy. My HCG level was 70. We got in to see Dr. Stangel and he said that he was confident that the Antiphospholipid antibodies were our problem and that aspirin and heparin therapy would be our answer. He said that I may only need to be on heparin for 10 weeks. After 10 weeks he said we would graduate. He went through some of the concerns with heparin. Since it does not cross the placenta and it should help the pregnancy, I cannot wait to get it into my system. We are getting the prescription today and going back to the doctor’s office for training. I thought about the heparin for so long and now I am just looking forward to getting started with it. We only have to do the shots 1x per day, which is much easier.

We left the doctor’s feeling pretty good, got some dinner and returned home. I felt a bit crampy at dinner and when I got home I found that I was spotting. The blood was brownish and Scott read from some books that this isn't always a cause for alarm and the fact that it was brown was good. I got shaky, laid down with my legs elevated, drank tons of water and called the woman who runs my support group for some advice on coping. She mentioned that I am more prone to bleeding because I am taking the aspirin. It seemed to stop within an hour so that made me feel better. You can say anything you want to a pregnant woman, but if they are bleeding, they are going to feel insecure no matter what.

11/11/98 (day 33)

Yesterday was a pretty good day. The bleeding stopped in the morning. We went back to the doctor to learn how to do the heparin shots. The nurse explained that the speculum from my exam on Monday may have caused the bleeding. Scott gave me the shot and it was fine. I only felt the burning once the liquid started going in. We then went home, ate dinner and I went to my support group meeting. After dinner I felt bloated and crampy again. When we got home from the meeting I was spotting again. I went to bed and woke up with the same.

I have had a lot of cramping in my lower back and very lower stomach. I do not know what this is but I feel it more when I get out of bed. As a result, I am spending a lot of time in bed. I listened to a relaxation/meditation tape and then thought I should write out what has been going on in my mind. These cramps make me nervous because I had intense cramps my 2nd miscarriage. During all of the shit I've been through, other than the biopsy and mini D and C, the most pain I ever felt were those cramps which resulted in a huge amount of bleeding during my second pregnancy. So, whenever I feel these cramps, I am afraid that they will escalate. I try not to think about them. I just wish they would go away and I could have one full day of peace.

The spotting has seemed to slow down which is good. I keep listening to my relaxation tapes and discs to stay calm. I am going to Mom's this afternoon for a change of scenery. Plus, everyone is going there for my brother’s birthday. I don't think I want to tell anyone else in the family until I see the doctor on Monday and at least know that my levels have gone up.

11/17/98

Well, it f’ng happened again. This time, I had a chemical pregnancy. Which means that although I was pregnant, the union between sperm and egg was so bad that the pregnancy never really took. I think the spotting that I had all week was really my period, stifled because of the progesterone. As soon as we found out that the HCG levels dropped, the bleeding stopped. My levels were 70 on Monday, 26 on Thursday and down to 9 on Monday.

We were upset when we heard that the levels dropped. We found out around 3:00 p.m. on Saturday. My Grandparents were treating the whole family to a show that night. They spent a lot of money and were very excited about it. We didn't want to let anyone down, so we went. We called our parents and told them the sad news but no one else. It actually was good to have to get dressed up and be somewhere. The show was fun and it took our minds off our misery.

Sunday was our worst day. I woke up crying and that just kills me. We ate breakfast (barely, which is very rare for me). I could not stop crying so we decided to do the communication exercise which we learned from my support group. It felt good to air out all of our feelings. We both cried and Scott said the nicest things to me. We came up with a bunch of things to do for the next few months (as we always do) to help ourselves get better. After every miscarriage, we always do this brainstorming thing where we come up with all these crazy ideas for big life changes. I read in a book somewhere that said doing this is normal but that you should wait until you are feeling better to actually make any decisions. We talked about me changing jobs, going to France, taking a six month break from all of this, etc. Scott said that he finds it harder and harder to have faith in God when this keeps happening to us. We are not asking for that much. All we want is a baby.

On Sunday, we went to the park. Scott and Jessie (our dog) ran around and I watched them and thought that I do have a lot in my life to be thankful for. Doctor Stangel called us around 11 to see if we had any questions about anything. That was so nice of him. My previous doctor never would have done anything compassionate like that. Scott told him about the torture of waiting for the last pregnancy to end and Dr. Stangel promised that we would not have to go through anything like that.

Monday morning started with a trip to Manhasset for blood-work. Then I went home for a couple of hours (did some laundry, cleaned) and picked up Scott at 1:30 at work for our trip up to Dr. Stangel’s office. I was pretty pleased that I didn't cry while I was home alone. I spoke to both moms who were both praying for the miracle of a lab error. The doctor told us there was a 5% chance of that. I did not have any false hopes. Scott’s mother can never really deal with bad things, so of course she was in denial and expecting a lab error. My mother was praying for a miracle. They are not very realistic.

We felt so much better after we spoke to Dr. Stangel. He started out by saying that we do have options. That next time, we will get the blocking factor done before I get pregnant. And, if that does not work, then we can try the IVIG thing. Basically, he told us not to lose hope. Then he explained that we had a chemical pregnancy, which meant that the heparin and aspirin never had a chance to work. I asked him if the fact that we have had yet another miscarriage would reduce our chances of ever having a successful pregnancy and he said absolutely not. This is the question I was so nervous about asking. He said that this was a different problem than the other three miscarriages, which made me feel so much better. He said we only need to wait one month and then we should get the blocking factor done and start trying. Scott told him we wanted to take a break and he said that was understandable but that physically, we only needed to wait one month. Of course, this starts me second-guessing our plans for taking a break. We left the office feeling less hopeless. Since it was a different problem, at least the treatment we tried has not been ruled out and it still may help us in the future. In the car ride home, we decided that we would take a 2-month break and start the New Year with a clean slate. We also decided to take a trip do the Bahamas around New Years. Since the IVIG thing would cost at least $10k, we are not in the position to spend tons of money on a trip to France. So now we have two months during which we don't have to deal with doctor’s visits, shots, drugs or pressure (self-imposed). We can just relax and enjoy the holiday season. This is definitely a new thing for me and as I type this, I question my ability to actually take this break because I just don't feel that I can stop trying until I reach my goals. But, I know that this break will make me stronger emotionally which will ultimately support my goal. Scott really wants the break.

Now I guess I will write about my feelings since that is what got me up so early this morning. Today, I feel very angry. I know I am not supposed to think about God during all of this or to ask “why”. Maybe if I type it out I won't keep thinking about it. I just feel like God is playing head games with us. How can he do something like this to us? As if three miscarriages weren't enough, now we have to have this chemical pregnancy on top of it? Are we being tested? I work so hard at staying positive and strong. I surround myself with quotes and literature on hope, faith, courage and belief, and I do believe in it. Yet, this. I have read all the books and I know that its not God. It's the randomness of Mother Nature (how come she gets to be a mother?). And that God gives you the courage and the strength and the support from those around you to go on. So I guess I should just blame Mother Nature. This is against everything I was taught growing up. I was taught that God is all knowing and has reasons for doing things. I have altered my view on this but at very low times I question it. Mom tells me that she's praying. I can't bear to ask God for his help because I am tired of all of my unanswered prayers. I did pray to Saint Margaret this time. (I recently read somewhere that she was the patron saint of pregnant women). So the first pregnancy, I prayed to God. Then I prayed to St. Gerard, then Saint Jude and now St. Margaret. I know exactly what I am doing. If I pray, do someone different each time, I won't feel so let down. Well, guess what? I'm out of sources to pray to. Well, maybe that is why I need a break. I am definitely bitter today but I know that is a stage of grieving, so I guess it is normal.

Scott and I are both off today and I think we are going to spend the day in the city. I am actually looking forward to work tomorrow and getting back into my routine. I am so glad I have my support group meeting on Thursday. And, Ilene was right, I was better prepared to handle a miscarriage this time around.

December 21, 1998

Boy, have we improved since 11/17. Barely a month and we are doing so much better….not perfect, but a lot better. I was feeling so much better and busier that I neglected to write in my journal. Recently, I started having bad dreams so I thought that was a sign that I should get my thoughts out on paper. I also have my period so I am probably somewhat moody and hormonal. Plus, just having it gets me focused on dates for trying again.

Christmas is a couple of days away and I have spent quality time with friends, family, and even people I work with. I have spent quiet nights in front of our beautiful tree. I never really cry anymore and eagerly anticipate more time spent with family. The only thing is, I just don't have that total Christmas feeling this year. I can't really articulate it, but something just feels missing. Deep down, I feel like the next pregnancy is going to be the one. But then, I get nervous to feel that way in case I am just riding for yet another fall. Now that I have my period, Scott and I need to start planning when to try, when to get the white blood cell treatment and a whole host of other crap. I just want to have sex this month without any protection and see what happens. But what if we do get pregnant and we didn't have the white blood cell immunization? Scott says we should hold off on it until we are really trying because it is a one shot deal and it only lasts for six months. So, we shouldn't waste the treatment on a month when we aren't trying, trying. Yuck. I can't figure out what to do and I don't want to even start thinking about it. It makes me too tired. The right thing to do would be to wait. But waiting is just not my style. I am getting upset right now because I don't know what to do. February seems so far away and nine months from then, an eternity. I think I know my answer. I think we need to schedule the white blood cell treatment and start trying again. I feel like I have had my break and it is time to get on with life. Now, how do I discuss this with Scott, who is enjoying this break immensely?

1/10/99

New Year’s was terrific. We did not want to ring in 1999 by being surrounded by our friend’s babies. So, we planned the cruise, which was wonderful.

On Thursday, we went to Philly and stayed with good friends. We were scheduled to have the white blood cell immunization process start at 9:30 am on Friday. We had a nice 2 hour ride there and then our friends took us out to dinner. It was nice spending time with them. The next morning, we all got up bright and early and went out to breakfast in downtown Philly. Scott was instructed to eat a big breakfast. We got to the doctor’s office and, before we even stepped foot inside, the receptionists were helping us. They were so cheerful and friendly. We completed some paper work and then were sent to the hospital so Scott could have about two pints of drawn. He got headphones and watched television during the process. We were done within a half an hour and had until 2:30 to get back to the doctor’s office. So, we had a nice, snowy day in Philly. We saw the Liberty Bell, shopped, ate at the Hard Rock Cafe and went to the market. We went back at about 2:15 and by 2:30, I was getting immunized. It was one shot in my vein and four in my forearm. They hurt but it wasn't too terrible. My arm was swollen, which is normal and they gave me an ice pack. Now we have six months to get pregnant. This process improves our chances for a successful pregnancy by 20%. So our chances next time around are 75 - 80% which is what it is for a non-miscarrier. I'll take those odds!!

I am very confident that this is going to work. Scott told me that through all of the physical aspects, he has not been much help. He said it makes him feel good that he can help and be a part by giving me his white blood cells. That made me cry. He also wrote a thank you note to our friends. He said that staying with friends made the whole process a lot easier for us. That made me realize how stressful he found the whole thing. I was relatively calm. I took a new approach whereby I didn't study up on every single detail of what was going on. This way, I didn't obsess over anything. I decided to just go into “automatic pilot” (to borrow a term from my best friend) and just go with the flow. It really worked.

Today we took down our Christmas tree. That was the last remnant of 1998 and I just know that 1999 is going to bring us the miracle we ache for so badly. I know it!! I am enjoying spending some quiet time together in the house for the first time in at least a month. I am not looking too far ahead to the future or too far behind us. I am just taking one day of my life at a time and enjoying each one to the fullest.

1/26/99

So much for taking things one day at a time and being optimistic. We have just had our 5th miscarriage. How many of these fucking nightmares do we have to go through? I found out last Monday that I was pregnant. Scott was in California so my parents accompanied me to the doctor’s office on Wednesday. Monday, my beta level was 41.2. Then, on Wednesday, it went all the way up to 108. Once I heard that the levels went up, I let myself enjoy it a bit. Dr. Stangel thought I should stay home from work until a heartbeat was heard two times. So, I told my boss and was ready to do everything in my power to make this work. Scott came home on Friday and I was so happy to see him. We spent all day on Saturday in our pajamas just lounging around the house and enjoying each other’s company. He cooked me breakfast, lunch and dinner and I read a book. On Monday, I had more blood work done and at 4:30, Scott called the office and they told him the level dropped to 38. I-re tested the level today and it is now down to 19. Scott came home from work. I left Mom and Dad’s (not a good scene). I cried all the way home and sat in the truck crying until Scott got home. It was good. I bawled hysterically and really let it out. Then, Scott and I took a ride to the beach and watched the sunset and did our communication exercise. Scott broke down last night and said that he felt better today. It hit him more yesterday whereas I felt worse today. Right now, we are trying to self-diagnose and I know we can't do that. We have a doctor’s appointment on Monday. Both of us will be going away for the weekend, which is good.

Although I try to fight it, I can't help but ask: “where is God during all of this”? I can't say that God is doing this to us because he can't be that evil.

God is in the strength of our relationship and our love that that grows stronger with every reproductive blow we take.

God is in the support, and love and care that we get from our parents.

God is in the good fortune we have to have our grandparents in our lives and living so close.

God is in the friendships we have.

God was there when two of my friends told me that they would carry a baby for us if we wanted them to. I can't even explain how much that means to me.

God is in the flexibility that Scott and I have in our jobs and the support we get from our bosses.

God is in our dog, Jessie. Petting her and looking in her eyes is more therapy than could ever be explained.

God was in the gorgeous sunset we watched at the beach tonight as we did our communication exercise.

God is in NINE where I was given the tools to keep myself from falling into the hole.

God will get us through this.

Tomorrow, I will stop feeling sorry for myself and move on. I will go to the beach, work out, get my haircut and do things for me. I will enjoy my weekend with my best friend and come back ready to face our world.

5/3/99

I am 8 weeks and 3 days pregnant and scared that writing in the journal is going to give me the jinx. I can't actually believe that we have gotten this far. We have seen the heartbeat 3x and my HCG level is over 110,000. I started at 9. I had to do blood work every other day in the beginning to make sure the levels doubled. It was complete torture. I prayed to St. Theresa five times every day. Of course, Scott did all of the phone-calls for blood-work results. He is sooooo good. I think we saw the heart beat for the first time on 4/16. We were very, very nervous, but we saw it flashing right away. I always thought that if we got as far as a heartbeat, we'd be unstoppable. However, I have been afraid to feel too good about anything. Once we get through the first trimester (less than 4 more weeks!), then I will be a normal pregnant person. A doctor told us that once you see a heartbeat, the chances of miscarriage are less than 2%. I go for my IVIG treatments every 3 weeks and they cost $1,000 a pop. It is really pretty painless. 2 jars of antibodies for about 2 hours and my body stops fighting against the fetus. The people in the doctor’s office are really nice and I basically watch TV while the “miracle juice” is going in.

My best friend calls me everyday. If she doesn't get my medical report immediately, she gets nervous. I am glad we talk so often She has suffered through the numbers game with me since day one. One day, we were talking about my 1st or 2nd pregnancy and I told her I couldn't remember something that had happened. She said “you mean it is a blur?!!!” Right away, I denied it. But, that was actually what I have been waiting for these past 15 months. I have been waiting for aspects of the Hell we were in to become a blur. It actually happened but I was too afraid to acknowledge it for fear that being too happy would lead to a fall. Scott does this way more than I. He is very guarded about everything. But, we did actually talk about names at one point. Every day, he lets himself smile a little more. My best friend and her husband (who also suffered through a miscarriage) are trying to get pregnant again and I like praying and hoping for them because it takes my mind off me. She was down when she didn't get pregnant the first time they started trying, which is par for the miscarriage course. You feel that with all that you went through, you deserve to be pregnant immediately.

Because of my high-risk situation, I have been home from work since we found out I was pregnant. Basically, I am on bed-rest. I never, ever thought it would be as hard as it actually is. I always got mad when I heard people complain about it. I always said “sign me up for 9 months in the hospital if that what it takes!”. Being unable to do anything is very hard to get used to. Yeah, I read and talk on the phone, but mostly I watch TV and wait for Scott to get home. I should try to enjoy this time because it will hopefully be the last quiet time I have for the next 20 or so years. But, not being able to do anything really limits your ability to enjoy being home from work. I can't wait to go back in 4 weeks! I am not complaining, I am so thankful to be where I am right now. It is just way harder than I ever dreamed.

Leyna Marie was born on December 11, 1999. I still can't believe we have been blessed with this miracle and with parenthood. Looking back on these diary excerpts certainly drudges up some painful memories. Mostly, they make me feel strong. Knowing that I overcame the torture of having five miscarriages gives me the confidence that now, there is nothing I can't do. I thank God everyday for our miracle baby and for the fact that we found the doctor and the technology necessary to overcome our problems. I am also thankful that I found the right support group and that I had so much love and support from family and friends. I am hoping that these pages will be helpful and encouraging to others suffering the indescribable pain of miscarriage.

Getting to the Decision to use Heparin
in a case of recurrent Miscarriage

"I have been pregnant 5 times. The first four all ended in miscarriages in the first trimester. I am now about 26 weeks along into my fifth pregnancy.

In May 1997 I miscarried twins at about 10 weeks. I had an immediate D&C. In November 1997 I was pregnant again. The sonograms began to show that this would not be a viable pregnancy so somewhere between 6 and 10 weeks I had another D&C. Tissue from this procedure was sent for genetic testing and came back okay.

In February 1998 I came to Dr. Stangel at the suggestion of my obstetrician after the second miscarriage. He explained many possible causes for our situation and many ways to explore them. We went through a variety of tests including chromosomal tests on my husband and on me, and a hysterosalpingogram to detect a uterine septum. All tests seemed to come back with good results.

In April 1998 I was pregnant and monitored very closely with blood tests measuring HCG and progesterone levels and with weekly sonograms. I was taking progesterone. The blood levels were rising as they should but the sonograms showed no sac forming in the uterus. This pregnancy was not viable and Dr. Stangel performed a laparoscopy.

In June 1998 I had a white blood cell immunization from my husband's blood. In July I became pregnant again and was taking progesterone. This pregnancy ended in miscarrying naturally in August.

After this, Dr. Stangel discussed our options with us. We were looking into two approaches and going to determine which we wanted to try - Heparin treatment or IVIG [Intravenous Immune Globulin] after surgery on the uterine septum. We opted for the Heparin treatment with the knowledge that there was a strong possibility of having another miscarriage.

When I became pregnant this time, my blood was again monitored very closely and I had weekly sonograms which showed the fetal heartbeat at about six weeks. From the beginning of this pregnancy I was on Lovenox [Lovenox Injection is a solution containing a low molecular weight heparin] everyday for 17 weeks. I was also on progesterone for 12 weeks and am currently continuing with pediatric aspirin daily. I graduated from Dr. Stangel's care at about 16 weeks. I am currently being seen once a month by my obstetrician.

I feel great and am expecting to deliver in about three months."
7/13/99 B.W.