Feeling overwhelmed

So today it's a Friday. The end of a rather rough week. It started with a long and intense session at the endo's, followed by a tiring week at work. I was feeling rather off colour all of this week, and my blood sugars reflected that by going mental. Which made me more tired and grumpy-snappy at hubby.

Today just seemed to be conspiring against me. One of my colleagues at work is VERY pregnant, and there was a joking-false alarm at work from one of the others about being pregnant too. People laughed and thought it was funny. Turned out to be something else entirely making her smile. Twice in meetings people used the word "pregnant" (as in "and then there was a pregnant pause...") and once I got asked by a friend, in front of others, if I was pregnant. Just like that, she came out and asked me. True, she knows I want to have a baby, but has no idea about my struggles with diabetes and IVF, and all the hurdles I face to GET pregnant.

So I feel like the world has just been rubbing my face in it today.

Oh, and where I work, there is a baby-clothes store right across the road. Enough already! It's getting so overwhelming! Whenever I drive somewhere I always pass a new mother pushing a stroller, or a baby-bump lady crossing at the traffic lights. The world is definitely trying to tell me something.

An unexpected letter arrived today...

...from my endocrinologist. I now have a team of doctors all concerned with getting me healthy and pregnant. No, I don't EVER do anything the normal way! hehe :P

To summarise, the letter details my medical history and medications and gives a very nice account of my meeting with the Endo two days ago. It lets all my doctors know the direction my treatment is taking, and recommends formally that I get a CGM (continuous glucose monitor) and insulin pump. Scary! And also exciting. Feels great to know that I'm finally getting some progress with this.

But it's still not nice to have the words "The problem is that the blood glucose two hours after her meal varies extremely from hypo values of 2.2 to elevations of 17, not clearly related to meal composition, time of day or exercise level." *sigh*

So this is not a post I was expecting to write, but I am overall quite happy that my Endo is being proactive and organising all my various doctors to get them all on the same page.

It's quite weird in that all my doctors are quite optimistic and happy to help, but when I try to bring up the topics of IVF, or my diabetes treatment (especially the idea of an insulin pump) with my hubby or family, they are a bit non-responsive and quiet. I keep waiting for them to be interested, or maybe happy that I want to have kids, (and hubby is, to an extent) but I know that this will be a shit-load of work over the coming months/years so I want to really know that they understand and agree. I can't imagine doing this without their support.

It was only when I read on an IVF forum (sorry, can't remember exactly where) that some people - strike that - a lot of people feel like they need to grieve when they're told that they need IVF that I started to understand my families reaction. They don't see this as another medical thing like I see it, another hurdle to cross. They see it as proof that I may not be able ever to have kids. So they are sad for me. They know that IVF is not easy, and they don't want me to have to go through that. But I'm not sad, not really. A bit put out that I have to go to all this work, and sure, it's uncomfortable knowing that I have this big "secret" that I can't talk to my mates at work about - it's not something suitable to talk about over morning coffee! But not sad. Maybe I'm in denial? :P

An hour at the endocrinologist

What a way to end a Monday. An hour long in-depth discussion with my diabetic endocrinologist. Whew!

We discussed my upcoming surgery to remove the uterine polyp, and I wanted to know what to do with my diabetes control during the anaesthesia. He reassured me that my anaesthetist will be able to handle the situation and would have dealt with diabetics before. He also told me in no uncertain terms was I allowed to let anyone take me off the Lantus insulin, as that could put me into diabetic keto-acidosis. Which is bad! He even went as far as saying if anyone tries - call me at home! Wow! :D

Endo wanted to know why I was having the polyp removed, and why I was doing IVF? I explained that it was due to hubby having a vasectomy, and that the odds of a reversal were nowhere near as good as for IVF treatment.

My most recent HbA1c test was done last September (about 7 months ago!) and it was 8.1, which is the highest I've ever had. At that stage, Endo did say that although it's not an ideal number to get pregnant at, he would only get really worried if it was around 12. But now that the idea of pregnancy is so much more serious, he said it would be better for me to get it down to the mid 7's if I can. If you are diabetic, you're probably reading that and going "nuh-uh! That's still too high!" but Endo explained that it makes sense for me, since I am a very brittle diabetic.

Please don't read "brittle" as "badly controlled". I do a gazillion blood sugar tests each day, and constantly correct with insulin, and count carbs religiously. Endo even said that "You're working soooo hard, just not seeing the results." It's not fair, basically. He can't explain why my diabetes is so crap, no matter what changes or experiments we do. I have been tested for everything under the sun. From thyroid disorders, or extra adrenaline, to stomach disorders, to eating disorders, to other weirdly-named things I can't remember. He's tested me for it, to try and discover the missing element which causes my blood sugars to fluctuate so wildly and for insulin to act so randomly.

So I wasn't surprised when he started to bring out the blood test order form and write me up a shopping list of tests to do. But I did nearly fall off my perch when he asked, "Do we even know if you have diabetes? Has anyone ever tested you for it?"

What's the test? I squeaked. I mean, this is major. If I've spend 22 years treating the wrong disease...

"Oh it's simply a blood test to look at your c-peptide level. Here I'll order one for you."

Apparently I could have something called MODY (Mature Onset Diabetes in the Young), which is like having type 1 diabetes AND type 2 diabetes at the same time. He doesn't think it's likely, since my insulin requirements are so little, and MODY usually manifests as insulin resistance requiring more insulin.

But the other reason to test for c-peptide is to see if I am making some of my own insulin. That could help explain the unpredictable lows I get. We shall see, I'm off to take the test in about 30 mins.

Ooh, speaking of tests, I looked over his shoulder and saw the result of a couple of my fertility tests from the other week. Looks like I'm ovulating no worries! Yay! :D

We spoke about getting me on a CGM for a 3 day trial. The hospital paedeatric department owns one, and they may be able to lend it out to me to try and help figure out what is going on.

The idea of going on an insulin pump also came up, and although in the past I've been reluctant to pursue the idea, the need to get better control of my blood sugars in preparation for pregnancy has changed my mind. Also, it's the only thing I haven't tried. Unfortunantely, funding for insulin pumps is now hard to come by in our region of New Zealand, and Endo was grumpy when he told me that if I lived in the a different area only 3 hrs away, I would almost certainly already be on a pump. Grr. Can't. Win.

And in a case of terrible timing, I may have also just said "no" to a cure for diabetes. Endo already has one patient on a trial in another city in New Zealand where a company called LCT Global is having remarkable success with clinical trials of their Diabecell product. Diabecell is an injection into the abdominal cavity of thousands of little cells harvested from specially bred pigs. These cells replace the damaged cells from the pancreas, and make insulin. The magic ingredient is how the pig cells are coated in a special alginate (read, seaweed stuff) that makes the cells invisible to the human immune system. So no need to take any immuno-suppressant drugs.

Twice Endo has offered to put me on this trial, which has in some cases cured diabetes and in all other cases lessened the blood sugar fluctuations. And twice I've had to decline because I want to get pregnant. One of the rules of the trial is that you can't reproduce after having the implant, since they haven't studied the effects through generations yet. Sigh. I will just have to wait. The good news is that they hope to be "bringing it to market" in 2 years.

That's a lot of stuff. I came home and my head was pounding with a headache, which is still with me today. I'm off work and taking it easy. Oh wait - got to go and do more blood tests!

Catch you next time :D

Log for Life - Diabetes Tracking Software

Diabetes is a disease all about data. You do blood tests several times a day, you count how many carbohydrates you eat, you note the amount and type of insulin you inject, and you record the time at which everything happens.

I'm a really good logbook-er. I have kept a written log book of my blood test results and related info for over 20 years. But since it's a paper record, I can't get all the juicy insights out of it that I need.

My main goal is to lower my HbA1C result safely, without having too many hypos/lows in preparation for the IVF treatment.

So I started testing out several pieces of online, desktop, or mobile software solutions for diabetes tracking. And I have found a winner! Unfortunately, it's not free, but nothing good is these days :P

It's called http://www.logforlife.com/ and it's an online system that was developed by a diabetic - so he has a bit of inside knowledge!

It costs $9 US p/month, which translates to about $15 p/month NZD, so it's not a cheap option for me. But I decided that the results I got in the 30 day trial period were too good to ignore. And I felt that it is a safe option, since there is no set time you have to sign up for; it's a cancel anytime thing, which I like :)

The best part of Log for Life is that you can enter multiple entries all at once. All the other software I tried out only let you enter one item at a time. (I wrote to several of them pointing out that this could mean I would have to enter 30+ entries a day! I'm not wanting to be a data-entry person! I have a life!)

But what I love best about it, is that you get some analysis of the data by clicking the Reports button. It shows you averages for blood test, medications taken, exercise, carbs, and weight.

It gives you a scattergraph that shows where all the results for the last month are on each hour of the day. That lets me see trends I had never noticed before. See the pic below and notice how you can see the meals quite clearly:


And here is what the day-to-day log book graph looks like. That little squiggly line under the larger graph is actually showing the last 4 weeks. With this I have been able to spot a trend of high test towards the end of each bottle of Lantus. So I have started changing them earlier to try and avoid the bad spikes in blood sugar. Very useful!


The other features that worked in favour of this software was the fact that they have a matching iPhone App so I could, in theory do away with the paper based log book altogether. Just got to find the money for an iPhone or iPod Touch! And the fact that you can share your data with other folks, like your doctor, or your family. Very nice. I am going to introduce my endocrinologist to this software on Monday, and I hope he likes it cos he's forever complaining that he can't understand my log book! We will see...

Two trips to have blood tests

I have spent the lunchtimes of yesterday and today at the medlab, getting my blood drawn for the progesterone tests. Oh what fun! :P

Everything went fine, although I am wondering if I may have to repeat the tests next cycle, since I missed day 17 and got days 18 and 19 instead! The ob/gyn said it should be fine, but since both of the lab techs asked me about it, now I'm not so sure. Oh well, time will tell. It will be interesting to see the results come back.

My appointment with the diabetic endocrinologist is next Monday, and I hope to introduce him to the new diabetes tracking software I've been using. More about that when I have more time :)

Wonderful ladies who blog about diabetes and pregnancy

I just found out that you don't normally get an obstetrician until after you become pregnant, and even then you may not need one.

I feel a bit special, since I've met my ob/gyn already. Have a read through some of my earlier posts to find out how that happened. :)

I would like to share a couple of links with you, to two blogs I am following:

sixuntilme.com

pregnantbethany.blogspot.com

Both of these women blog about their experiences as type 1 diabetics having their first child.

There are plenty of IVF blogs, and even some on youtube, but nothing that has caught my fancy to follow yet. And no luck yet finding a blog dealing with diabetes, pregnancy, IVF, and vasectomy! I will keep looking!

Have my first ob/gyn sanctioned blood tests tomorrow, and I can't wait! (Unusual, I know: normally a blood test is the last thing a diabetic wants!)

Wish me luck! :)

My clever idea

Oh my goodness! The number of dates and appointments I've got to deal with!

All of the blood tests I have to do need to be done on specific days of my cycle. I have pre-surgery appointments coming out my ears, and I need to ensure that the surgery itself doesn't occur on my period!

So I have begun using two systems to help me:

• Google Calendar
• Hormonal Forecaster

Google Calendar is great, because I can share the calendar with my hubby, so he gets fair warning of what is when. And it has the fantastic feature of SMS text message reminders to your cellphone. This will be great for me, so I can remember when to take all these tests, and see all these doctors, at the right time. It also means I won't have to use my work calendar, cos this is not really the sort of stuff to be putting on that! It's also online, so I can access it from anywhere I have an internet connection.

Hormonal Forecaster is a great little piece of software that you can download and try out, although it does cost to get a full registered version. It's not too expensive, when you think of all the "period math" it saves you from! I use it to track the length of my cycles, and estimate when and if I am ovulating. I want to do all I can to try and figure out if I'm fertile and functioning before proceeding with any fancy fertility treatment. As far as we know, I'm fine, and hubby's swimmers are fine (as evidenced by 3 bouncy kids). It's just a vasectomy getting in our way.

So it's technology to the rescue!

Progesterone blood tests

It's also time for me to start doing that long list of pre-appointment blood tests for the fertility clinic. I have decided to start with the progesterone tests, as they are mid-cycle tests to be done on days 17 and 18 of my monthly cycle. Unfortunately, day 17 is tomorrow, a Sunday, so the lab is not open. :( The ob/gyn doctor said it will be ok to move the test to the next day, which is Monday. I hope this will be ok, I would hate to have to wait another month to repeat the tests!

They're testing for other interesting stuff too, like Hep C Antibody, HIV Antibody, and a group of tests called the Initial Antenatal Group. This includes Rubella, HBsAg (Hep B), Group, Antibodies, CBC (complete blood count), and RPR (syphilis).

In my next cycle, I have a day 2 blood test which includes FSH, LH, and Oestradiol. But that will be another post!

Surgery is scheduled!

I got my appointment cards for my hysteroscopy surgery yesterday. The operation will occur on the 20th of May, so that's about a month to wait. Not too long, in fact it's quicker than I expected. I thought perhaps being on the waitlist would make it about six months. The kindly ob/gyn wrote something special on my referral, which meant that while the hysteroscopy is not medically necessary or urgent, it is clinically urgent, to speed the fertility treatment process along.

The hysteroscopy is a 10 - 15 min operation done under anaesthesia where the doctor will use a small camera to look inside my uterus, and small tools to remove a 6mm polyp that was detected on an internal sonogram.

I would not normally have to have this procedure done, as the polyp is most likely benign, but the fertility clinic has requested I get the polyp removed to prevent it possibly acting as an IUD later on in the baby-makin' process.

I am quite nervous about this surgery, as it will be under general anaesthesia, which I've never had before. From what I hear from friends and family, it's not a pleasant experience. :(

I have appointments prior to the surgery with a nurse to introduce me to the hospital (ha! like I need that! :P) and with the aneasthetist, where I want to discuss how my diabetes will be controlled during the operation. I've been the only one in control of my diabetes since I was about ten. I want to talk to the anaesthetist about this, I'm sure it will all be fine - I know they are very skilled, but I just need them to put my mind at rest.

Why I'm writing this blog

So I thought I would take a moment and let you know why I'm writing this blog, when there are hundreds and hundreds of others out there.

I've just started with all this, and the sheer amount of information related to "infertility" and "ivf" is overwhelming. Where should I start looking?

Plus, I have not yet found a single blog that deals with the same issues my husband and I face: age difference, vasectomy, IVF, and type 1 diabetes. There are some fabulous blogs out there about most of these topics, but none explaining how to pull it all together. I guess I will write in the hope that it may help someone else who is dealing with the same stuff.

I also just want to chronicle all this for my own personal interest. I have tried in the past to keep a written journal and failed miserably every time. Here's hoping that the added incentive of an audience will inspire me to keep writing!

As an aside: I had never stopped to consider that we were an infertile couple. My husband has 3 wonderful kids (feels like 7 when they start making noise!), and there is no reason to suspect anything is wrong with me. It's just that vasectomy. It's not "infertility" when it's self-inflicted, is it? Apparently, yes. That's what my ob/gyn says anyway, and he's a trustworthy sort of fellow.

Another aside: Sometimes it really bothers me that a decision made in a previous marriage can affect me so physically and deeply. It's life-changing, knowing you cannot possibly have a child without "assistance". But that's life and I just have to get on with it.

I have heaps of things to write about, so I hope you will find reading it useful. Stay tuned.

Got endo and educator appointments Yay!

After last weeks excitement of the ob/gyn and the initial feedback from the fertility clinic, I got to thinking that I should let my diabetes team know what I'm up to. I called the hospital and tried to find out when my appointments with the endocrinologist and diabetes nurse educator are scheduled.

Of course, I had to call 2 different departments, and one of the phone numbers was wrong and sent me back to the operator. (This was probably due to me using a 2 year old phone book :P). The receptionists were poles apart. One I know by first name, and was friendly and got me an appointment right away, for later this month, which I thought was excellent luck.

The other was brusque and kept talking over me to patients that were coming to her counter. She obviously wanted me off the phone, and told me three times that I wasn't even on the wait-list. I politely asked (again) for an appointment, since diabetes doesn't go away and I should have a recurring appointment set up for at least every 6 months. She started to say something like "You can't get an appointment for at least 3 months..." when my Outlook calendar started beeping to say I had a meeting. I asked if she could call me back, and was told, no, she would send a card out. Grrr. I hate being sent a pre-defined appointment time, as more often than not I can't make the time and have to miss it altogether and am forced to wait until the next schedule. So grrrrrrrr!

Funny how little things like a grumpy receptionist can ruin your whole day. But being diabetic means I am somehow expected to deal with it, and accept it. Well I don't. I am one of those people who gets grumpy and tells people that it's not acceptable.

So I got appointment cards on Saturday morning. Nearly a month to wait until the endo appointment, and 2 months until the educator. Would be most excellent if I could get them both together in the same room. The endo is very technical and is more likely to try and figure out the issue behind my blood sugar fluctuations. While my educator will almost always jump to the conclusion that I'm not counting my carbs right and send me back to the dietician (who thinks I'm doing fine, thank you very much), or something similar.

Now it's just a bit more waiting...

First visit to an ob/gyn

Thanks for joining me again. I'm still in catch-up mode, writing stuff down to help bring you up to speed on where I'm at now.

I went to my first appointment with the ob/gyn to discuss the polyp. The GP had suggested that it was most probably benign, but could in some cases act a bit like an IUD and interfere with any pregnancy attempts. The ob/gyn confirmed this, but he was far more interested in the fact that I was diabetic! And trying to get pregnant! And with a hubby with a 9yr-old vasectomy! How thoroughly interesting! He's a nice chap and put me at ease straight away.

Ob/gyn explained that there were no local fertility services in my city, and that I would have to make the 3 hour trip to another city for treatment should I wish to proceed. He kind of assumed it was all go, although I still thought I was just investigating options.

He wrote letters to the fertility clinic asking them for advice on my case, and we waited a month.

This last week we got a letter back, and I returned to hear the news.

Ob/gyn had basically good news for me. The fertility clinic had recommended not a vasectomy reversal as we had expected, but rather IVF and ICSI (say "icksy"). A vasectomy reversal would have only about a 30% success rate in the first 12 months for us, whereas the IVF/ICSI method would have closer to a 60% success rate.

Of course it's never that simple. With IVF, I would have to take hormonal drugs, which are expensive, and hubby would have to have what's known as a sperm retrieval operation to get sperm for the ICSI procedure.

The doctor went on to explain how the fertility clinic recommended I proceed with getting the (benign) polyp removed from my uterus. The operation, a hysteroscopy, involves general aneasthesia which makes me nervous, as I have reacted badly to local aneasthetic in the past. Also, the idea of giving someone else control of my diabetes for any length of time makes me nervous. I don't care how well the aneasthetist is trained! But that is a hurdle I will deal with when I come to it.

All these things sound expensive, because they are. We're not rich, so the first question out was "how much is all this going to cost?" The doc smiled and told me that in New Zealand the government funds the cost of the first round of fertility treatment. And as a bonus, the hysteroscopy operation would be government funded too. I would have to go on a waitlist for the op, and the fertility clinic would give more details about the treatment.

Ob/gyn wrote official application letters to the fertility clinic, requesting an initial appointment. He also used up most of the rest of his blood-test order forms. I have 3 sets of blood tests to do, and hubby has one. I also have to get the hysteroscopy done before appointment. That's a lot of stuff to do over the next month and a bit!

On top of all that, I want to go back and talk with my endocrinologist and diabetes education nurse. I am quite sure that they had not considered the idea that I would ever have to undergo IVF. (Google suggest that the IVF drugs can screw with type 1 diabetes.) The endo tends to forget the details of my case between 6-monthly visits, so has taken to asking me if I am pregnant, and each time I politely remind him of hubby's vasectomy. sigh. ohwellnevermind. Endo has mentioned that I may be eligible for an funded insulin pump. So I want to ask him a million questions about that, like, if I get pregnant will I need to go on a pump? Should I get on a pump now to get a better HbA1c number? (Currently 8.1, the highest ever :( in my entire life), will consumables be funded? Can I look at getting a CGM too? My diabetes educator actually wears an insulin pump. A rare sight in NZ and even rarer in my small city. Hers was actually the first one I ever saw.

And as a last thought, should I start taking pre-natal vitamins? Is that jumping the gun a bit? :P I don't want to freak hubby out. Although he has agreed to the idea of a child in principle, this whole IVF/operations for both of us thing has completely changed the mix. We both want to meet with the fertility specialist and discuss options and what it all means before committing to this course of action. Although it promises to be cheaper that I had originally imagined, we will still have plenty of travel, time of work, and accommodation to pay for to get to the clinic in the other city. And pretty much every blog I read says that it's a trying and tiring time, which will either bring you together as a couple, or drive you apart. I am really worried about that, as we are happily married and love being together. I know he's a wonderful Dad already, and I am enjoying being a part-time step-mum to his 3 kiddlies. I really hope we can have kid/s of our own.

Wow that's heaps of words, are you feeling as tired as I am? Whew! I am going to make a glossary, as there are plenty of confusing words and acronyms, and just plain kiwi-isms which you may not know.

Thanks for reading, catch you next time.

:)

An introduction - what I'm going to talk about

Ok, so let me introduce myself. Me? What do I say? Hmmmm. That's harder than it sounds! Ok, stop messing about: I am a type 1 diabetic who wants to have a baby. I'm 27 years old and married 1-year-and-a-smidge to my wonderful 45 year old husband.


He's a divorcée with three fantastic kids from a previous marriage. We see them every second weekend. I've lived with them for 6 years, and have grown fond of the idea of having some of my own one day. Of course, my hubby being so much older than me causes a few issues in timing. Ideally I would like to do a bit more in my career, maybe start my own business. But if I want kids, I have to start thinking about it now. This is what I told myself about 3 years ago, as I was finally figuring out that this was the cause of my lasting and draining depression. I wanted kids, but hubby had no idea of my thoughts. We had never discussed it. I knew when I married him that he had a vasectomy. So when I figured it all out, and realised that YES, I WANT TO BE A MOTHER!! it was a relief - and then of course: how to tell him? It took me one and a half years to pluck up the courage to talk to him about it, and all I can say is that I shouldn't have waited. Because he was happy and nervous. Just like me :)


I know that's all very complex so far, but bear with me, there's more...


Since I am a type 1 diabetic, I knew that any ideas about pregnancy would greatly interest my doctors. So before I dragged hubby off to the GP (family doctor) to talk about what was involved in a vasectomy reversal, I chatted with my endocrinologist and diabetes nurse educator about what I may need to do with my diabetes care. I am a brittle diabetic, despite intensive blood glucose monitoring and multiple daily injections of Humalog and Lantus. That was months ago, and I remember the endo mentioning an insulin pump, an idea which I have always resisted (read: been scared of) up til now. So I have that aspect to think of as well.


So we trotted off to the GP and he explained that since hubby's vasectomy was 9 years ago, the chances of a successful reversal were not too good because of possible scar tissue. But, he's a very nice doctor and he understood how much this means to me, so he suggested that before we look at spending what could potentially be a lot of money on any sort of fertility treatment, we do a bit of investigative work first. "Insurance" was how he described it. So I was sent off for a bunch of blood tests for things like FSH, LH, and something else I can't remember, and hubby was asked to do a sperm count, and promptly didn't do one. sigh :P Ohwellnevermind.


The first lot of test results for me came back good, and the GP suggested another test, which I would have to pay for: an internal sonogram/ultrasound. This would check for any major anatomical trouble with my girly bits. Although the sonographer gave me the impression there was nothing abnormal, the doctor informed me that in fact I had a polyp in my uterus. What does that mean? Well, they're fairly common, and normally benign. But to be on the safe side he referred me on to an obstetrician/gynocologist. Just to get a second opinion.


And that will be the contents of my next post, cos writing this has been a bit emotional and rather tiring. Best of luck and see you next time.