Friday, August 24, 2007

The Trip so far

I had my Uterine Fibroid Embolization on Tuesday August 14. Although my recovery has been pretty good, if you've done any research on UFE's you are going to read about being very tired after the procedure. This is very true....do not think otherwise and do not think you are superwoman and are going to be different. More on that later. To start out, I'm going to go back in time a few months and give you the background of how I got to this point.


March, 2007
After spending a year and a half dealing with exessively longer and heavier periods, I decided it was time to go to an OB/GYN for my yearlies instead of having my regular doctor do them. So, I made an appointment with an OB/GYN recommended by my insurance companies "nurse direct". He was an OK guy, and pretty much from the start, based on my description of my symptoms, suspected Uterine Fibroids. He did my yearlies and indicated that he could feel what he thought were fibroids in my uterus. Instead of fooling around, I had him do tests to make sure there was no cancer. All OK on that front. He made a followup for a uterine ultrasound and then followup with him.

April, 2007
After the ultrasound (not exactly my favorite experience), I had the consult with the OB/GYN. He said I had at least 4 large uterine fibroid. The largest the size of a softball, others he described as varying types of balls. I've heard them described as fruit, but, heck, I had a sporting goods store in my uterus! We went through all the various options, because of the size of the fibroids, my age, the fact that I didn't plan on having children, etc. At that point, he said he thought my best choice was to have a hysterectomy and just take care of it. They would take out my ovaries of course to avoid any problems in that arena, and that would cause immediate menopause. Any effects of that we could deal with hormones.

Well, I'm like, whoa buddy, wait a minute. I had a busy spring summer coming up. A conference with a friend coming as a speaker in May, my neices wedding in July and a big convention that my friend Sara and I were working on some major projects for. No time right now to spend 6 weeks recovering from a hysterectomy. I didn't give him all these details of course, but, I did say that I didn't have time for that right now at work or in my life, so is there anything we can do in the meantime. I think he was a little taken aback that I didn't just whip out my calendar and say, lets do it next Wednesday. But, he said that sometimes Progesterone would help reduce the symptoms and slow down the growth. I said, lets try it. So, I started taking Progesterone for a week and off for 3. It helped reduce the flow, but, my period started getting longer. On top of everything else, of course, I was pretty anemic, so I also started taking Iron supplements in addition to vitamins.

My next appointment was scheduled for the end of June.

In the meantime, my friend Sara and I had been having some pretty heated discussions about the whole situation. She insisted that a hysterectomy wasn't my only option and started combing the internet for information. We're both Librarians, she just has a little more time to do extented research on stuff. She would send me stuff about women who had hysterectomies who were upset and had problems and frankly, it didn't sound like a lot of fun. But, since I've never had surgery other than dental stuff, anything sounded scarey to me.

Oh, besides everything I mentioned earlier, did I tell you we were in the process of buying the house we had rented for almost 5 years. Despite the fact that our banker kept telling us everything was fine, it was nerve wracking. Also, because we were buying it from our landlord, we had to do a lot of things that realtors do. It was a learning experience and stressful, on top of everything else.

So April was pretty uneventful otherwise. The progesterone did control my period somewhat that month (my body probably didn't know what to do at first). Sara hated it that I was taking this, thought it was more harmful than good. She would come into my room and check on me in the middle of the night to make sure I was alive. It got to the point that Jeffy my cat would also come up from the end of the bed and check on me. I figured I was willing to give it a chance.

The Story of the Bumpy Bluterus
In late April, our Labor Council has a Solidarity Dinner. Before the dinner started, we were talking to our Council Presidents wife. She was about 5 months pregnant at that point. She teaches childbirth and has had all three (Lucien born August 15) at home with a midwife. Since Ellen knows that both Sara and I knit, she asked if we could knit her a uterus for her classes. Sara and I looked at each other, and then said, OK. Sara got home that night and I think she went on line yet and found TONS of patterns. She proceeded to knit Ellen a lovely pastel varigated uterus for her class. Sara kept offering to make me a new uterus and we began calling it the "bluterus" for some reason. My personal organ became known as the bumpy bluterus.

May/June 2007
At the beginning of May we closed on our house and at the end of the month we started on our yard projects for the summer. The first one was to get rid of two incredibly ugly bushes, one in our front and the other that was consuming the back yard. Our friend Kyle helped and him and I did a lot of work. It didn't wear me out and I felt good working outside on MY HOUSE.

After the bushes were removed, Sara and I built a retaining wall where the former ugly front bush was. We also removed the grass (using hand tools). After we had the wall built and the ground ready, we planted $150 worth of perennials. They were little, but, we vowed to water them and make sure they made it through whatever summer had in store. I felt good and did a lot of heavy lifting and digging to get the wall built and the plants in. It is beautiful now. I'll get some pictures posted soon.

Anyhow, as June went on, I was doing OK, but, I was dreading my next appointment with the OB/GYN. I also had another Uterine Ultrasound scheduled. That was at the end of the month.

About a week before my appointment, I had the period from hell. I woke up in the morning and decided to sleep a few hours. Usually this would help and I could make it through the rest of the work day. I showered and was doing OK. But, as soon as I got to work, I practically stayed in the bathroom. I decided it was worthless to try and stay. I came home and scared Sara to death (she was home for lunch). I ran into the bathroom and stayed in there for about a half hour. No one at work knew where I was. I finally crawled to the phone and left a message for my supervisor. Then I layed in the middle of the living room on my back for 45 minutes. I was close to the bathroom and being on my back slowed things down. I finally got to my bed and slept like the dead for the rest of the afternoon. I felt like a rubber band and had not energy after that. Ya think, I probably lost a lot of blood in those 6 hours. I didn't have to work the next day, Sara and I were working on our union history project by then. I tried to help Sara put up the window box she built for the front, but, that was the beginning of my energy drain. Sara started me on Gatorade, and that did help me get to feeling at least functional.

The next week, Thursday was my next appointment. During the ultrasound, the technician actually spoke! (She hadn't said a word other than directions the first time). Her comment, wow, these are really large! Afterward I went to my appointment with the OB/GYN. He had looked at the images and said that the fibroids, at least two of them had grown (so much for the progesterone). I told him about my really heavy period (it had never been that bad before). He decided the answer was to up my progesterone to 3 weeks on and 1 week off to try to prevent that. Then he proceeded to go on about hysterectomies, again. He told me that one of the fibroids was prolapsing into my cervix and this could cause major problems. Sure make me feel that there are no options. Luckily, Sara had gotten through my thick skull enought to make me ask him if there were absolutely no other options. He said, well, there are UFE's but his description left a lot to be desired. He said it had something to do with an MRI and a cathether and cutting off the blood supply to the fibroids, but, he really didn't know if that would work for me. I asked him to refer me for an evaluation. I think he was a little stunned. I left then. I eventually told Sara what had gone on. But that time, she had no trust in my OB/GYN, who she called "Mack the Knife". He had scared me enough to think that I had no options. It was upsetting and it was Sara's birthday.

July 2007
Anyhow, as time went on, I assured Sara that I had told him that I wanted to be evaluated for the UFE. I was still in his control, since he had to make the referral. It almost took two weeks to hear back. I was ready to call when I got home and found the message on the answering machine from the scheduler at the hospital. That alone was a kick. The person at the hospital was all ready to schedule the UFE. She did not know what she was talking about. By that time, I had done my research. I said, don't I have to be evaluated first. Oh, maybe, perhaps I should have the Interventional Radiologist's office contact you. I did not expect to get a call back that day, but, within a half hour, I was talking to perhaps the nicest medical person I had talked to in a long time. She was the PA for the Radiologist's who would do the work. We talked about the procedure, and an hour later, my MRI was scheduled for the Monday after our convention (July 24). That would get me through the wedding and convention. My biggest worry was that I'd have flood during one of those events. Having it during the wedding would have been devastating. I was so worried that was going to happen

In the meantime, folks kept telling me how great I looked and asking me how much weight I had lost. I was actually down one size. I was doing anything. Between the progesterone, the constant periods and I think the stress, I had obviously lost weight.

July 24
I left work for my MRI and consult with a dread hanging over my head. What if I wasn't a good candidate. Then it was back to Mack the Knife. I registered at the desk and was taken back to the radiology waiting area. Little did I know that I would see this area in just a few weeks. The person who took me back asked if I was working with the PA from the IR's office. I said yes. She said, "oh, she is the sweetest person, you are going to love her". That was completely unbiddened. But, it made me feel really good and I relaxed a little.

In just a little while, they were prepping me for the MRI. I had never had one before. A IV was started for the dye that would help them see the blood flow to my fibroids. The MRI room was FREEZING. They wrapped me in a nice warm blanket and gave instructions, don't move, etc. I was a little leary about it, but, once I realized that my head wasn't going to be in the tube, I relaxed. The whole thing took 45 minutes. The last portion was with the dye where I had to also hold my breath. That explained why they didn't want you sleeping.

After I was finished, the PA was waiting for me. While the results were being assembled. She explained the UFE procedure. Asked me what my symptoms had been, etc. She was the first person who mentioned "quality of life" as a reason for doing this. I felt like hugging her. One of the Radiologists was available to look at the images, so I left knowing that I could have the UFE. I just had to work out when....
As it turned out, I would have the procedure on August 14.

So, Sara and I sat down and talked about things. There were some projects we wanted to get done around the house this summer yet. Primarily, putting up a fence in the front and along one side of the house. This was going to be a BIG project. We kinda thought if we both took a week off, we could get the picket fence done and maybe with help get the privacy part started. Based on this we thought the week of August 13 would be a good week to have the UFE. That would give me alost three weeks before classes started to feel better. Well, the best laid plans.

We started working on getting what we needed for the fence, building permit, etc. The weekend of August 4, we borrowed a friends truck and bought the pickets, cement and posts. We decided to have the privacy panels delivered. We had also realized by that time that we would not be able to handle to privacy panels, so I talked to Kyle, a friend at work about helping out. He didn't hesitate, I think he likes building fences. I was fine on Saturday loading and unloading the supplies, but, it seemed that by late that afternoon, any strength I had was sapped. What a surprise, I started a pretty heavy period that by Tuesday had me pretty sapped out. I was no help in all the hole digging. Poor Sara, wore herself out trying to get things as far as we wanted that week. We had some good help from Kyle, Rob from work and Joe our neighbor. In the process, we acquired a sawzall. I did help Sara put up the picket panals later in the week, I could hold those up. PROGRESS!

On Friday, we took the day off and drove to Door County. We hadn't been there since winter. We had lunch at our favorite restaurant and then drove around in Peninsula State park. We found the trail we climbed in winter when we were snowshoeing and got on the wrong path. I knew there was no way I could have done that at that point.

On Sunday, I mowed the lawn. The last time for a few weeks. Sara made my favorit thing, risotto.

On Monday, the 13th, I figured I would take care of getting all my paperwork signed for the legal stuff (ie., power of attorney, etc). I took care of a few other things. We had chicken for supper and then I wanted to go to Culvers for Chocolate Turtle sundaes. I figured, if I wasn't going to feel like eating for awhile, I wanted to have something good.

August 14
Overnight it stormed. I didn't sleep well because Jeffy kept jumping up and down off the bed. When I got up, I felt like I was getting ready for work, but, I felt a little scared about the whole thing. As we drove to the hospital, another storm was rolling in. I thought that was appropriate....

Sara and I found my sister Cheryl in the waiting area. I got checked in and we started in the outpatient surgery area. This was where I started to realize that there were a lot of folks in the medical profession who didn't know what a UFE was? Little did I know that I would be explaining it many times in the next 24 hours. Getting prepared was a real experience. A blood test, questions, starting the IV, getting the morphine pump set up etc. My procedure was set for 10am. At some point, the PA from the Radiologists came in and went through everything again, just to make sure. She had my prescriptions already written for when I'd go home. Yikes, five of them, how was I going to deal with that? We decided Sara would see if she could get them from the pharmacy so that we wouldn't have to stop on the way home on Wednesday. It wasn't much past 10am when I was ready to go down to the Radiological area. Riding down on the gurney was probably the toughest part. By that time, I knew there was no turning back and I just felt so helpless. I was scared. When they rolled me in the room, I was amazed at the number of people in their. Later, I told them they were like bees on the flowers in the garden. Things got started pretty fast. I didn't feel anything for a least the first half hour or so (forgive me, my sense of time from this is probably off). I started getting worried, because I remember being told that I would start feeling cramping at some point during the procedure. Finally, the Radiologist told me that I'd probably start feeling something. I didn't---did that mean it wasn't working? I was worried. I said it again about five minutes later, that time I felt it. I told the person who was monitoring my vitals, etc. At that point they started the pain meds. I was awake during the whole thing (I might have dozed off for a short time). I had to hold my breath a few times while they took some images. The pain wasn't bad, yet. During the procedure, I could tell the Radiologist was explaining the procedure to folks. I guess I was right, folks don't know a lot about these. Sara would tell me her experience later.... When the UFE was done, I asked the radiologist if I could see the before and after. He seemed excited to show me and it was interesting to see the vessels before feeding the fibroids (evil things) and then see then shrunken to nothing or almost nothing. After pressure was put on the artery to make sure it wouldn't bleed, I was prepared to be brought to my room, moved back to a gurney, etc. By that time, the pain was starting in earnest. Whoa! Cramps like I never felt in my life. I was moved to my room in the Women's care unit. There were several others up there to help move me to my bed. One of them, nurse, CNA, I don't know, was pretty chatty. She seemed to know what I had done. She made the comment, oh, you decided to not become a member of the anti-uterus club. A bunch of us up here have had hysterectomies and we're so happy. I half expected Sara or Cheryl to come flying across the room and deck her! Then, when I was settled in my bed, she asked me if I thought I would be going home that day. Excuse me, I have a narcotic pump, I'm supposed to stay 24 hours. What a dumb question. Luckily, that was the last time I saw her. From then on, it was pretty much pain and dozing off and on. I just wanted to curl up in a big ball, but had to keep my right leg straight. At least I could move my left. Imagine the worst cramps you're ever had and multiply by 100, that was how it felt. I had no sense of time. I know Cheryl stayed until later in the evening to make sure I was OK. Sara left for awhile to go to the pharmacy. I moaned and cried and slept. Later Sara came back. She really wanted to stay and make sure I was OK. The nurses were great. Because I was basically in an OB room, it was really nice. Big bathroom, nice couch and chairs. The couch did convert into a bed and the nurse helped Sara get set up. But, Sara couldn't sleep and finally she decided that she needed to sleep to be able to take care of me on Wednesday when I got home. After she left, I did finally fall asleep for more than a few minutes.....

No comments: