30 Week Update

Friday we had an ultrasound. The main reason for this ultrasound was to check on the position of the placenta. At the 20 week ultrasound, the placenta was low - which if it doesn't move can mean delivery would require a C-section. It's pretty common for it to be low at 20 weeks and the likelihood of it moving was very high. So this was the appointment to check on the progress. We are so happy to know that the placenta has moved up and away from my cervix.

Our little munchkin is getting bigger and filling his face with fat. He's not so alien looking as 10 weeks ago. The technician gave us a nice tour of Joshua's body - head to toe - and he is in great position. He even seemed to be acting a little ticklish as she was showing us his feet.

Here is a pretty decent profile shot...







We have supposedly 10 weeks left and I think it's going to go by pretty quick. We have our hospital tour Wednesday night and this weekend we're heading to Cambria for our "babymoon". Then shower season begins. I'm looking so forward to seeing my friends and just celebrating everything. We are so grateful for how relatively easy this pregnancy has gone. There seemed to be so much potential for risks or complications and God has been very generous in answering our prayers and blessing us with a wonderful pregnancy.

28 Week Update

Friday we had our 28 week appointment. It was a very good appointment with lots of good news.

I had taken the glucose screening test two weeks earlier and for some reason was really worried about the results on this one. Not entirely sure why, but just was. I was very happy to learn that the results were fine. I will not have to go for the actual glucose tolerance test. This is a three hour test following a night of fasting. They would draw my blood four times in three hours. With how hard it is for me to deal without eating on a normal basis, I really didn't know how I would have survived that test. But, no worries.

My liver numbers were also tested. This is the big news. My numbers are in the normal range for the first time in at least four years!!! Truly, truly amazing. We had heard that pregnancy can tend to put the PSC symptoms in a sort of remission. But it hadn't happened yet, so I figured it wasn't going to happen for me. But lo and behold, my numbers are normal. I am so grateful. Now we just gotta bottle this pregnancy stuff and make it a cure.

We also have started to learn a little bit about cord blood banking. Initially I didn't want to spend the money to do it and figured we would just donate it. However, my doctor said that if we were to bank it, it could actually come in handy for my liver issues. That was new news and a very intriguing idea. So, we need to look into it more and better understand the potential.

The last couple weeks I have been having a really hard time getting going in the morning and just really sluggish and light-headed. Since the glucose test came back fine, I asked about my iron levels wondering if I was having anemia issues. But those were fine too. The doc said it's probably just the hot weather we've been having and I should drink more water, stay cool and out of the sun.

So all in all, very good news all around. The pregnancy is going great. Joshua is a wiggle worm. We have another ultra sound at the end of next week to check on my placenta and make sure it has moved up. Hopefully we'll get better photos than last time.

Here's my growing baby (and belly)...




On Sunday Jim and I went shopping for our crib. We were successful in our quest and Jim took to putting it together right away. Now with the crib, the wall color and the fabrics, you can really get a feel of the room.


My mom is making great progress on making the bedding and I can't wait to see it!!

Hooray for Dr. K!

Today was my next follow up liver appointment.

You may recall my troubles with Dr. Stupid-Head. Well, when I got my confirmation for my scheduled appointment, I was informed the appointment was with Stupid-Head. So I called to change my appointment to make sure I could see Dr. K. - - Mr. Wonderful; Mr. Nice; Mr. Knowledgeable.

He's nice.

I've spoken with him on the phone but haven't actually seen him since February!

No big news to report today. My liver numbers are about the same, just slightly higher. I had gained some weight since my last appointment and since my medication is based on weight, Dr. K upped my meds to hopefully bring the numbers back down. I've already started losing weight again, so hopefully we can bring the meds back down soon too.

I go back in three months and then we'll probably talk about the wonderful procedure which shall go unnamed. Stupid-Head said I should get it done every year, but Dr. K is okay with every two years and the last one was in June '07. See? We like him!

Vulnerability

The past few weeks have been a roller coaster and it puts me in the position of struggling with what to share on this blog. So I will try to let myself be a least a little bit vulnerable.

We started our first round of Clomid in September. All signs were looking good: I knew I ovulated and the tracking of my temperature was indicating that things were working. Jim and I went on vacation in October and got the happy confirmation that I was indeed pregnant. What a shock to learn that the Clomid worked the first time!!! But then we were tortured with not being able to share the happy news until we returned. We had to tell our parents first and had to do it in person. We had so much fun sharing the news with our family and friends and started thinking about all the things to be done.

Then, unfortunately, on the night of Tuesday October 28 I started to suspect I was miscarrying. I tried calling my doctor on Wednesday but she was unreachable. So we ended up in the emergency room to at least find out what was going on. It was a long four hours which ended in confirmation of the miscarriage at six weeks.

The emotions connected with this have been so overwhelming and I’m still sorting through them. But I am learning a lot about myself and I know I will grow from this. Trying to understand what God’s plan is for my life continues to baffle me, but I will continue to try to understand. Patience has NEVER been a strength of mine, and that tends to bite me in the rear over and over.

But part of why I want to try to share all this is to also just express my thankfulness and gratefulness to all of you who have poured out your love and support to Jim and me. Being on the receiving end like this is a new experience and surprisingly kind of hard. I know that I typically try to gloss over things and put on the front that “All is well.” But I am trying not to do that this time. I am surprised at how much effort it takes for me to let the vulnerability show through. We do really appreciate all the flowers, cards, emails and notes that have been sent our way.

As far as moving forward is concerned… Jim and I saw the OB on Thursday and she seems much more attentive than what we have felt in the past. We kind of feel like because I’m such a complicated case that perhaps she wasn’t really optimistic about my getting pregnant and was just going through the limited motions to appease us. But I think now that she has seen that we can get pregnant, she’s ready to take things more seriously. So we have to wait a couple months before she will prescribe the Clomid again, but next time I get pregnant she will start blood work on me right away instead of waiting to see me at the typical eight week mark. And she echoed what we have been saying that at least we now know that I can get pregnant and that is a step forward.

2008 - February

February 4th

We had our follow up appointment with Dr. K. He had reviewed the liver biopsy with another specialist at Long Beach Memorial Hospital. They came to the conclusion of the diagnosis of Primary Sclerosing Cholangitis (PSC). PSC is a chronic (lasting years and decades), progressive (worsening over time) disease of the bile ducts that channel bile from the liver into the intestines. Here is the description from the Mayo Clinic.

Primary sclerosing cholangitis is a disease in which the ducts inside and outside the liver are narrowed due to inflammation. In the disease's early stages, the bile ducts (bile is a liquid that helps break down fat in food) and the tissues around them become inflamed. With the spread of inflammation, the bile ducts are destroyed and scar tissue is created. Continued inflammation and scar tissue buildup can lead to cirrhosis, where scar tissue distorts the liver, disrupts blood flow through the liver and interferes with its normal function.

The cause of PSC is unknown, but it is thought to be an immune response in which the body attacks the cells lining the bile ducts of the liver. This response may be due to exposure to something in the environment, a virus or bacteria, or a person's genetic makeup.

The course of PSC is unpredictable, but in most people it progresses slowly. Although PSC can be life-threatening, many people with the disease live active, productive lives.

Dr. K prescribed Ursodiol (Urso) which should help to slow the progression. A liver transplant may be in the future, but hopefully not for 10-15 years (at least). Dr. K orders an MRI (or MRCP) and a bone density test. I also have more blood work done to check my vitamin levels as this disease can cause deficits in A, D, and K. I will see him every three months.

February 7th

MRCP (Magnetic Resonance CholangioPancreatography). It’s basically the same thing as an MRI except no dye is necessary and it focuses on the biliary tract. I’ve never had anything like this done before and it makes me think of eighties movies that were futuristic where everyone and everything is in white, with bright lights. But I lay on a table, get strapped in, wrapped in sheets and the table moves into the tube.

Now, when the technician took me back to change my clothes in preparation, she kept talking to Jim thinking he was “Shawn” (even though I was wearing the medical bracelet). They told him to remove everything from the waste up and put the gown on. I asked, “What about my bra?” (wondering about the metal clasps). Response, “No, that’s okay.” She also made no mention about jewelry at all. But I had heard that you shouldn’t have any metal, so I took all my jewelry off. When I went into the room, they kept checking me and my name (still expecting a boy).

So as the table is moving into the big magnetic tube, Jim pipes up and says “She still has her bra on…?” The two technicians freak out, pull me back out and have me take it off. I have horrible images of little pieces of metal ripping through my body. AAAHHHH!!! J So what did that first tech think she was answering when I asked the question?

The test itself went fine. I didn’t get claustrophobic, but I can see why people do. Jim and I were worried that I would have an itching fit if I had to lie still for too long of a time, but no itchies bothered me. It was pretty loud in the tube and I had earphones on that the techs could talk to me through. The whole thing was maybe 10 minutes.

A few weeks later I received a survey asking how my experience was. I made sure they knew that at no time did anyone inform me to remove all metal. It was only luck that Jim and I knew about it.

Dr. K called a week or so later with the MRCP results which just were a confirmation of the PSC diagnosis. There are signs of scarring in the bile ducts, but doesn’t sound like it is too bad or serious at this point. Definitely in Stage 1 (of 4).

Adjusting to medication was a bit tough. I was pretty tired, lethargic, and blah. But about a month later I was feeling better.

Overwhelmingness

Dr. K called yesterday. I like him. Have I mentioned that before? He asked how my weekend was. How nice is that? Yes, I like him. He said he had done some research and spoke with some people and now has the opinion that it will be okay for me to have fertility treatments. We’ll just need to monitor my liver closely which would involve blood tests every other week during the treatments and every month during pregnancy. He had already left a message for my OB-GYN.

I missed the OB’s call last night, but she left a message saying she was okay putting me on Clomid. She will be on vacation the next two weeks, but when I start my next period, I need to see her within the first five days.

What a complete transformation. Just a couple months ago I was feeling surrounded by dead-ends and closed doors. I was having a hard time holding on to the hope. And now I feel I have options. I have been doing a lot of reading and fact gathering and feel better equipped than I have throughout this process. Jim and I have a lot to talk about and decisions to make.

• Are we sure we want to do Clomid? (I know, seems strange to be asking at this point)
• Do we want to start it with my next cycle?
• Do we want to do Clomid only?
• Do we want to do Clomid with IUI?
• Do we want to try IUI first without Clomid?
• How many times do we do Clomid alone and then combine it with IUI?
• When do we consider IVF?
• Do we consider IVF?
• ???????

As much as I feel overwhelmed by the options, I am grateful to have this kind of overwhelmingness (my new word I invented for today). At this point we probably will wait at least one more cycle before using Clomid. We want to have the ultrasound results and the endocrinologist’s blood test results before we make any definite decisions about anything. And it is likely that between our travel and the OB’s vacation, timing might be a little screwy any way.

God will provide.

When It Rains, It Pours

The idle time of waiting for some sort of progress with doctors has dramatically shifted into a busy week. Here was my today:

5:45 am – Woke up and took ovulation test.
A little background on this ovulation test: It’s the digital kind from Clear Blue Easy. It counts the days and tells you which days to test. There are three phases: low (no surge in hormones); high (hormones starting to surge, leading to ovulation), peak (you should ovulate within 24-36 hours). This is the first month I have used it and as of yesterday we were at day 25 and still hitting the low mark. I was getting discouraged. Is it broken? Am I broken? Do my hormones really not do what they are supposed to and that’s been the problem all along?

Today the test came back as "peak". Good Grief! How did we miss “high”? (I may have messed up a little with the tester, I now know better.) And to put the cherry on top, Jim is out of town. He hasn’t travelled for work in nearly eight months and has been so antsy about that. He finally gets a two day trip and I hit peak right in the middle of it. He’s right – God really has a sick sense of humor.

My primary doctor gave me a referral for an ultra sound to be done when I think I’m ovulating. Since I can’t ever tell physically, I have been waiting for the monitor to tell me. So now I have to decide if I should try to go in today or tomorrow

7:00 am – Go to the lab to have the blood tests for endocrinologist.
I was afraid it was going to be ten vials like one of my girlfriends had which made her pass out. Luckily it was only two.

7:55 am – Call to schedule ultrasound.
They couldn’t get me in tomorrow and were looking at next week. I explained my situation and I was put on hold. She comes back on the phone and asks if I can be there at 10:15 am today. So now my day is starting to flip upside down, but as Tim Gunn says, I will “make it work”. She explains the prep I need to do by drinking water.

9:07 am – Received call from Dr. K (the liver doctor I like)
Have I mentioned how much I like him? He just starts off with some really friendly banter. I essentially just wanted to open up the questions again regarding fertility treatments / Clomid. Since my liver has been doing pretty good for six months, what is his opinion now? Essentially he is going to consult with another doctor and get back to me hopefully within a week. There is concern that the medication could affect my liver; but conversely, being pregnant sends the PSC symptoms into remission. So it’s a fine line.

I also re-asked the question to him regarding being sick last month and when I should be concerned. He asked me if I had some specific symptoms – all of which were “no” – and then said that those symptoms are really the ones to be concerned about being PSC related. Otherwise my body is just fighting harder when I get sick. Now, why couldn’t Dr. Stupid-Head have told me that? That was the answer I needed!!

9:15 am – Start drinking water

10:15 am – Arrive at medical center

10:35 am – REALLY HAVE TO PEE!

10:45 am – Ultrasound
The technician was very friendly but I wanted to kick her in the shin every time she pushed on my bladder. It’s a very sadistic procedure, especially for someone with a “pea-size bladder” as my husband always likes to tell me.

Praise You in This Storm

I have always been attracted to songs that can so perfectly describe where I am in life or what I am feeling. I am not a poet and I am usually awed by someone's ability to put emotions into words. Below are the lyrics to a song that I was exposed to for the first time last week when my friend Mark shared his story at work about a serious car accident he was in a year and a half ago. This song spoke to him during that time. It speaks loudly to me now.

Praise You In This Storm
Casting Crowns

I was sure by now, God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I'll praise You in this storm
and I will lift my hands for You are who You are
no matter where I am
and every tear I've cried
You hold in Your hand
You never left my side
and though my heart is torn
I will praise you in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus

I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth.
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth.

Chorus

Dr. Stupid-Head

Well, I had hoped to get all up to date on the history of my medical journey before my next doctor appointment, but that has not happened. But I don't want skip sharing today's events. So you will have to forgive me as I will have to go Back to the Future in later posts.

THE LIVER DOCTOR APPOINTMENT
This morning I had my 3-month check up with the liver doctor. My previous appointment had me meet with a different (new) doctor - Dr. Stupid-Head - that I was not very happy with. I told my regular liver doc, Dr. K, about my frustrations with Dr. Stupid-Head and he told me how I could make sure to see him (Dr. K). So when I called to confirm this appointment, they told me it would be with Dr. K. I was extremely disappointed when Dr. Stupid-Head walked in this morning.

He said my liver scores are basically holding steady. I would share the numbers, except I accidently left my copy with my second appointment of the day (which we'll get into shortly). I had questions to ask the liver doc and this is where the frustrations ignite. Since I was really sick last month with a low fever that came and went for five days I wondered if/when I should get concerned in those cases. I've never been sick like that before, so what should my mind set be? His response was "That's not related to anything [meaning treatment] we are doing." But, uhm, that wasn't my question.

Let's try another question: "I am meeting with an endocrinologist later this morning. I will obviously tell her about what's going on here, but would you recommend any key points I should make sure she knows?" The response..."Endocrinologist...that's bones, right?" He then proceeds to tell me how PSC affects bone density (information I already know).

ARE YOU KIDDING ME?!?!? How did this guy graduate medical school without knowing what the endocrine system is?!?!? I said, "Never mind, if you don't know, just forget it." And I shut down and just wanted to get out of there. How could I ask any other questions when I don't trust that he knows anything he's talking about and he seems overly anxious to schedule my next colonoscopy. When the nurse was scheduling my next appointment she asked if I wanted to see Stupid-Head or Dr. K. I let her know very clearly that I only wanted to see Dr. K. So she worked hard to figure out the schedule and she said she would call me if it changes.

THE ENDOCRINOLOGIST APPOINTMENT
I killed some time at Jamba Juice and updated a couple friends on the first appointment before heading to the second appointment. I love being able to vent to them about Stupid-Head. Jim met me for this one. I don't really understand what an endocrinologist is for, so didn't know what to expect from this appointment. I was just hoping to leap another hurdle forward. I figured she would either be able to 1) look at my hormones and thyroid and whatever else and determine if she could help me OR 2) she would determine she couldn't help me and be able to make the case to insurance that I need to see a specialist. The biggest question Jim and I need answered right now is Am I Ovulating?

We met with Dr. T and she was very nice. I told my story and told her we were looking for direction. Because our goal is pregnancy, she didn't feel she was the one we needed to get help from. She says we need to see a fertility specialist. She will write a letter to help make the case. YAY! We got one desired result. Dr. T will also do a blood work-up on me to check all my hormones and everything so that we at least have that information. If she sees anything that she feels she can address, then we will tackle that as needed.

So, no huge successes, but at least we can still feel forward momentum. I could use prayers for emotional stamina as it has been pretty hard lately. I'm feeling pretty buried by the business of it all and need to remember the joy I am truly seeking.

Life Interrupted, then Continues On...

Life the last two weeks has not been what I would have planned. I came down with a NASTY flu / cold thingy and it really knocked me off my feet. I'm still coughing and have a little stuffiness, but at least I am alive and kicking. The timing was horrible as my job gets busiest the first two weeks of every month, plus I had to finish up my web design class and Jim's birthday party is fast approaching.

But I did get an "A" in my web class with 420 points out of 425 possible for my final project. So that feels great!

Parents have been pitching in to help us get the house ready for the party and I don't know what we would do without them.

But the big update for today is my curtains. Jim and I have been struggling for months (almost a year, really) to find the perfect curtains for our living room. We have had lengthy discussions and down-right-foot-stomping-folded-arms sessions at JC Penney. Once we agreed on the "apparatus" style (rings with clips) it was becoming impossible to find the right fabric. So my mom and I finally took a friend's suggestion and headed to the fabric district of Los Angeles. I heard there was bartering/negotiating involved and that conjured up scarey images in my head. But once we were there it was not scarey at all. We looked and looked and looked and I was about to settle on a design when we walked into the right store and there my fabric was glimmering in the heavenly light surrounded by angels and harps. No second guessing - that was my fabric. And the guy at the store was very helpful in helping me pick out the right sheer to go behind it.

Since then Jim and I have hung the curtain rods and my mom has been dilligently sewing the fabric. Last night the all the planets aligned and the curtains are now beautifully hung.

Here are the curtains in the context of the room

This is a slight close-up of just the curtains.



You can see the clips and the detail.


And the rods and everything together.

Another fun hurdle to all of this was the massive size of our slider door. We needed rods that were 144". These are not easy to find especially in an appealing design. Thank the Lord for Lowe's! My curtains are up and all is right with the world!

2008 - January

Jim and I start out the year with an organic diet. In December my mom had given me the book “The Great Physician’s Rx for Health and Wellness” by Jordan Rubin. The author tells his story of medical issues and while my issues have been no where near as severe as his, there were elements I could relate with all too well and it brought me to tears. So I am inspired to change my diet to natural, unprocessed foods and organic as much as possible for at least 40 days – if nothing else than to relieve my liver of some of its filtering work. Jim volunteers to do the same. I also decide to just cut out alcohol all together; so New Year’s Eve I had my last drinks. It took a while to get used to the diet as it is a lot of work to eat so fresh. But Jim and I were both feeling better AND losing weight.

January 7th - we met with the new liver specialist, Dr. K and I really like him. He’s easy to talk to, seems patient and motivated to get to the bottom of my case. I tell my story and explain how we are trying to start a family and hoping that more clarity on my liver situation would give Dr. OB comfort in proceeding with more aggressive treatment.

He has a preliminary guess as to what I have and it is called Primary Biliary Cirrhosis (PBC). We are excited at the prospect of having an actual diagnosis with a name and potential treatment. Dr. K will pull all my information from the first GI doctor and run new blood tests and wants to know how I feel about him basically starting from scratch. I told him I was fine with that as far as non-invasive tests were concerned, but wanted to pause before doing anything invasive (such as a liver biopsy) and really make sure I understand why it would be necessary. That was fine with him.

Alkaline Phospate: 701 [27-142]
AST/SGOT: 139 [1-45]
ALT (SGPT): 194 [1-55]

Dr. K also asked if I had any rashes or other skin stuff. I pointed out to him a spot on my left shoulder and he didn’t think it was related to my liver and guessed it was ringworm. He couldn’t do anything about that so suggested I see my general doc.


January 8th - I called the Primary Doctor’s office and they got me in that day to see the nurse. She didn’t think it was ringworm and didn’t know what it was. So she gave me some cream to put on it so I could “wait and see”.

2007 - Copays, Copays and Copays

January – The year started out with a really ugly case of the flu. My tummy is really upset and never really gets better. The call also comes from the general doc with the ultra sound results which reveal that I have Polycystic Ovarian Syndrome (PCOS). This is why I have irregular cycles.

February - April – The “Voodoo” Doctor…now, I will try to describe what I mean by a “voodoo” doctor. This is the term I have come to use to refer to the chiropractor / naturalistic / homeopathic / etc kind of people that my parents have gone to for years. I can’t ever adequately explain what they do and that’s part of why I just say “voodoo”. I, too, have seen these kinds of “voodoo” people off and on at my parents’ suggestion and I do believe that their treatments can be helpful for some people; unfortunately I can’t say that I personally have had much success.

So I was resistant to the suggestion once again and this time my dad sat me down very seriously to urge me to go. Well, when a dad talks so earnestly, a daughter takes care to listen. I went to this doctor in February and she exuded confidence that she could help my tummy problems, my itching, and the conception process. By the time April rolled around, I had spent more money than I was happy about (as this was not covered by my insurance) and couldn’t point to one issue being improved. Too-da-loo Voodoo!

May
Alkaline Phospate: 631 [27-142]
AST/SGOT: 148 [1-45]
ALT (SGPT): 178 [1-55]

June – GI doc decides it is time to do a colonoscopy. This procedure results in the diagnosis of Inflammatory Bowel Disease (IBD) also known as Colitis. This month Jim and I also met with the OB-GYN for the first time. With the PCOS diagnosis, she puts me on Metformin which should help to regulate my cycles. This time the OB utters those favorite words of mine…“wait and see.”

July – With the IBD diagnosis, GI doc has me start taking Asacol. My body revolts! Just days after starting this medication I am in EXTREME pain and feeling really bad. I wimped out one night while helping a friend clean her newly bought house, and the next day had to cancel on two social plans (and I HATE cancelling!) Jim and I decide I need to go to the emergency room. They do x-rays and tests and all the fun stuff they do. The steroid prednisone is added to the mix to help the inflammation, vicodin (which I quickly come to LOVE!!) as needed for the pain and some sort of anti-nausea medicine – just in case all them other drugs make me feel nauseated. Don’t I feel like a walking pharmacy?!?!?

Alkaline Phospate: 683 [27-142]
AST/SGOT: 91 [1-45]
ALT (SGPT): 176 [1-55]

About a week after this hospital visit, Jim and I left for our big cross country road trip from California to Michigan and back – 18 days. It was full of adventures and while I didn’t feel my best, I wasn’t as bad as I feared I would be. Energy was one of the biggest factors, so we did some things a little slower, but I don’t think I ever had to not do something as a result of my puniness.

August – Had a follow up with GI doc and we adjusted some meds and did more blood tests. The numbers had come down quite a bit mostly due to the prednisone; but GI doc doesn’t like this medicine for long term.

Alkaline Phospate: 380 [27-142]
AST/SGOT: 74 [1-45]
ALT (SGPT): 116 [1-55]

September – The first follow up with OB. No change to my cycles. Give it more time.

December – We met with the OB again. My cycles have not regulated from the Metformin and obviously we haven’t gotten pregnant yet. Unfortunately the OB is uncomfortable with the “unknown liver issue” and doesn’t want to put me on Clomid until she gets comfortable with that. She strongly recommends I get a second opinion on my liver.

Alkaline Phospate: n/a
AST/SGOT: 223 [1-45]
ALT (SGPT): 299 [1-55]

2006 - Lots of Tests

January – Blood tests again – YAY! The results? Elevated liver functions (LFTs). One went up, two went down.

Alkaline Phospate: 239 [Normal range: 27-142]
AST/SGOT: 42 [Normal: 1-45]
ALT (SGPT): 77 [1-55]

I stopped taking the pill and any other medication for anything to try to cleanse my system of junk – including pain relievers – that might affect my liver. Pretty sure I cut back on the alcohol too; I can’t remember if I cut it out all together at this time.

April – Blood tests. LFTs skyrocketed up. Way up into the wild blue yonder.

Alkaline Phospate: 553 [27-142]
AST/SGOT: 97 [1-45]
ALT (SGPT): 215 [1-55]

GI doc says, well it can take a while for the birth control to flush out of your system. “Let’s wait and see” (these were to become my new favorite words) and do more blood tests in 3 months.

July / August – LFTs still up.

Alkaline Phospate: 611 [27-142]
AST/SGOT: 94 [1-45]
ALT (SGPT): 163 [1-55]

Time for a liver biopsy. The biopsy is an interesting procedure. I'm awake and they locally numb the area on my right side just below my ribs. One guy is watching through ultrasound while another sticks the needle (or whatever) in that numb area. He grabs a couple pieces of my liver and viola! It's done. Then I have to spend the rest of the day laying on my side to make sure I don't bleed to death (dont' you love the drama?! It's just means you get waited on hand and foot - YIPPEE!!) But all in all it's a pretty simple procedure, just not one you want to do very often.

The biopsy confirms that I have hepatitis. Now, hepatitis simply means “inflamed liver.” There are many different types of hepatitis. And lucky me, mine is of the “non-descript” (my next favorite words) variety. I ask if we can name it after me. :) GI doc doesn’t know how I got it. He says it may get worse, it may not. We’ll “wait and see” – there are those lovely words again.

September – Shortly after moving into our new house, hubby and I decide to officially start trying to have a baby. Jim was very emotionally moved by the death of Steve Irwin, the Crocodile Hunter. He felt a strong wave of how precious life is and didn’t want to waste any more time. I think also finally being established in our house, it was like we finally had all our ducks in a row.

November / December – I haven’t had a period for a very long time. I am hopeful that I am pregnant and hope to be able to share the news with family at Thanksgiving. But pregnancy tests keep coming back negative and I don’t really feel I have pregnancy symptoms. I finally call my general doc, and he sends me for blood work which confirms I am not pregnant. The next step is to schedule for an ultra sound at the end of December. At some point in here I am also put on progesterone to kick start my cycle again. The day after Christmas, I have the ultra sound and I also started feeling pretty lousy by that evening.

2005 - In the Beginning

May / June – After one month of wedded bliss, I became aware that I was itching - a lot. The itchies moved all around but I had no rash; it was causing me to create scratches on my skin. Maybe I was allergic to something – hopefully not my husband! I saw my general doctor, he ordered blood tests and recommended I take Clariton to relieve the itchies. The blood tests came back normal with the exception of elevated liver enzymes. Hoping it was a fluke (maybe I had had some alcohol too recently) we did a second test. Not a fluke - still elevated.

Alkaline Phospate: 163 [Normal range: 27-142]
AST/SGOT: 37 [Normal: 1-45]
ALT (SGPT): 72 [1-55]

So I was then referred to a gastroenterologist (GI) who could specialize in what might be happening with my liver.

August – I met the liver specialist (GI) who ran more blood tests. Guess what – yep, elevated liver numbers.

Alkaline Phospate: 195 [Normal range: 27-142]
AST/SGOT: 66 [Normal: 1-45]
ALT (SGPT): 112 [1-55]

At this time in life I was working full time, trying to finish my college degree, and four-months newly married. I was also on birth control. GI doc said the pills could be causing my liver to be inflamed. I wasn’t ready to risk the addition of kids into the mix yet and I would be done with school in January – I would go off the pill then. So we wait.

Hello World!

I have recently been lured in by the blogging world. For the longest time I couldn’t conceive any scenario where I would consider doing a blog. But recent events in my life have given me exposure to various blogs and I started to feel the desire grow in me.

I’m still exploring what I want this blog to be about, how detailed I want to get, and my comfort level with the potential audience. But I feel that life is so full of adventures and chances to learn and grow, that recording them is very important to me, and sharing them is a unique opportunity. I have been a journal-er off and on my entire life. But writing is cumbersome and I have always known I don’t go into as much detail as I would like. I believe that by typing out my experiences, I can capture more detail and be more diligent.

I’ll give a brief description of the recent life events here, but then spend the next few entries going into greater detail. In the last three years I have been diagnosed with Colitis, Polycystic Ovarian Syndrome (PCOS), and Primary Sclerosing Cholangitis (PSC) a chronic and progressive liver disease. My husband and I are hoping to start a family and these issues are causing issues. I was always pretty darn healthy as I grew up, so now to be dealing with all these medical things is just strange.

My goal is to share my adventures on this path – both good and bad – as a means of providing updates, reflection, and recording. I also welcome any input others may have as I continue to learn.

And in between all the medical mumbo-jumbo, I will share with you the life of Shawn!