Thursday, November 11, 2010

Now That It Is Over (Maybe) I Can Talk About It

The last few weeks of my life have been the most terrifying and joyful I have ever known. The purpose of this blog has never been to document every aspect of my life, and I purposefully kept my pregnancy quiet because of all the complications that could have arisen as a result of the disease. But I do think it's important to talk about the disease, if only for other people in the world that have Wegener's Granulomatosis. If someone searches and ends up here, and knows about what I've gone through, maybe it can help someone else going through something similar.

We managed to make it to 34 weeks without very many problems. In fact, all of the problems that I did have, swollen joints, exhaustion, some other minor things that could all easily be explained by pregnancy. There's just one thing... they could just as easily been explained as the disease flaring. It was impossible to tell what was what: was I developing pre-eclampsia or was it the disease or was it just pregnancy in my case. Because it's so rare, both my disease and then women with my disease having babies, there were so many unanswered questions. The main thing I knew was that I was being followed by exceptional doctors. Then, my lab results showed disease activity, and that was that, things were flaring. It was minor and we'd get it under control. Only it didn't end up being minor at all. It ended up being dramatic, violent and life-threatening.

Five weeks ago my lungs started bleeding. I had just seen the OBGYN that afternoon and was so very tired. For the previous couple days, I couldn't catch my breath, but when the baby gets big enough, it too pushes on your lungs. Hence, yet another explanation for a disease symptom that can be confused with pregnancy. But when I coughed and a chunk of blood the size of a toonie landed in the sink, my heart stopped. That's how the disease first presented itself. That's how I got sick in the first place all those years ago. So, I sent a quick email to my pregnancy nephrologist (doctors give you email addresses now!) and asked her what to do. She sent us to the Labour and Delivery section of Mt. Sinai and then the ordeal really started. It's called hemoptysis -- I always used the term hemorrahging to describe what the disease does to my lungs -- but essentially, they were bleeding internally and it wasn't stopping. Because it's an OBGYN ward and not a disease ward, there was some confusion about what to do with me and the first night I spent in the hospital, the orders didn't get transferred over. I spent a miserable, freezing cold, uncomfortable night with a bone dry IV and coughing up bucket loads of blood for hours until they started rounds in the morning.

By then, the severity of the situation had dawned, and the chaos began. The words "life-threatening" were uttered more than once and they floated around the idea of putting me in Intensive Care. In the end, they moved me back to Labour and Delivery for one on one care. Through the course of the day, I saw, no word of a lie, 52 doctors that first day. They decided to treat the situation aggressively because of the baby. Let's not forget that I am still pregnant. They decided to do plasma replacement therapy. It's kind of like dialysis. They take out all the bad plasma, the stuff that contains the antibody that is the cause of the disease, and replace it with donated blood product. The machine is hooked up to you via a central line, and out goes all your plasma into a bag that gets destroyed. The treatment takes about three hours all tolled and then you get unhooked. We did seven days of this, plus IV steroids, to try and stop my lungs from bleeding. It took over 1o days but it worked. The disease somewhat settled down at that point, and the "plex" therapy as they call it is quite amazing -- in short, once it was finished I could feel no disease in my body whatsoever, but it only lasted until the next treatment. It did, however, contribute to my condition becoming stable. We had one little glitch with the plex, and on the second day my hemoglobin dropped, and so I had my very first blood transfusion. Of course, it didn't work the first time, so we had to do it twice. I signed a lot of consent forms and tried not to worry about all the risks. I suppose when you weigh the pros and cons, it's better not to be dead.

Things looked up from there, at least for a while, until I started developing pre-eclampsia, which is pregnancy induced hypertension. With women with underlying renal problems, the likelihood of pre-eclampsia developing is high and, of course, it's hard to tell whether the disease encouraged the pre-eclampsia or whether or not my pregnancy would have ended up with the complication anyway. The higher my blood pressure went, the more medication I had to take, everything, luckily, is safe for the baby, who, by the way, is perfectly fine. So, I am in the hospital, taking more medicine than ever, sicker than I've actually been since I was first diagnosed with the disease, and pregnant on top of it. The prednisone's making me a little batty, so I'm cleaning my hospital room at night and trying not to lose it being hooked up to all the machines, poked for blood everyday. The one saving grace was listening to the baby twice a day on the monitor and knowing that he (we didn't know "he" was a "he" at this point) was just fine.

After I had been in the hospital for two weeks and seen probably over 70-odd doctors, they called an "all doctors" meeting to decide what to do. According to my OBGYN, the plan was to get me stable and then let me go home and deliver the baby naturally, but when the pre-eclampsia started to rear its ugly head, they changed their mind and they decided to induce at 36 weeks. And when they make that decision, it starts immediately. Like, that same day. So, over we go to Labour and Delivery again and they being that process. It takes forever. I was still doing work because I was so bored just sitting there waiting for it all to happen. It's all a bit clinical, but it was the safest way to deliver the baby, and when my contractions really started they gave me an epidural because they didn't want my body to be under any more stress and for the disease to go haywire again.

So, we were mid-way through the next day, Friday, October 22, when they discovered that my placenta had really started to act up and was causing the baby distress. So, no labour for me -- they whisked me into an operating room and we had a c-section. Our RRBB was born at 3:04 in the afternoon and weighed an impressive 6 pounds 9 ounces. Not bad for 36 weeks.

The next few days are spent just dealing with being new parents, something that many people go through, we had plenty of rough starts, namely with feeding, and only because we didn't quite realize that just because the baby falls asleep after eating that he's actually full and/or had enough to eat. I was also really anemic and taking tonnes of medicine, so it took forever for my milk to come in. In the end, they let us go home, finally, after two weeks and five days in the hospital. Oh, but before we left? We had another transfusion because the surgery dropped my hemoglobin to 72. Imagine this -- having a blood transfusion while trying to breastfeed, the tubes stuck in your arms, the baby in your arms, grabbing at everything, but it worked and my iron counts were much better the next day. That gave me some much needed energy to just be home after all those days cooped up in a tiny hospital room.

We spent a glorious 24 hours at home.

Then the baby developed a little jaundice and the family doctor's scale miscalculated his weight so we were back at the hospital for him. That was a rough night. We weren't in our nice, private room any more but on the maternity ward. The couple next to us had their own baby, and baby schedule, so we didn't sleep a wink. Of course, my blood pressure was sky high, from worrying about the baby and from no sleep, so when they checked it for me, it was in a state where it wasn't safe to let me go home. We were admitted back into the hospital again, and I almost lost my mind. The resident, who was only trying to help, wouldn't let us leave. I tried to explain that I could monitor my BP at home (I had a cuff) and was seeing a team of doctors in a week, all of whom know about all of the conditions -- she kept trying to diagnose me and I kept saying that all I needed was proper rest and to get my baby out of the hospital. So, I tried to check myself out at night and the nurses and my RRHB convinced me to stay -- they didn't put anyone else beside us and my BP came down slightly. But that was it for me, it was now Friday and I had been in hospital for three weeks, one of which with my poor newborn who had seen his sweet bassinet only once in his life.

Then I did something completely out of character and checked myself out against doctors orders. My BP by the time I got home and relaxed and got some sleep? 123/71. Perfectly fine, as I knew it would be. But those last couple days were the breaking point for me. I just couldn't take anymore. Luckily, things are now starting to calm down, we think. The disease is still scary and active, and I am still recovering from all of it, but the baby is thriving, gaining weight and doing really well with breastfeeding. The last time I was this sick, it took over two years to get better, and who knows if my body will ever recover. Funny, all the doctors told me it would be fine -- well, that there would be risks but that they'd catch the disease before anything too terrible would happen. Oddly, just like when I was first diagnosed, the disease is mysterious and difficult to diagnose until it's on you like a tsunami, dragging you down and drowning you in your own blood.

Now, the really hard part begins. The recovery. Dealing with the exhaustion is one thing, I mean, we have a glorious little newborn at home, but dealing with everything else that happened on top of it took its toll. I feel a lot like I am just coping. Just getting through the days hour by hour, and that's all I can do: plasma replacement, IV steroids, bucketloads of drugs, two transfusions, another disease (pre-eclampsia that apparently lasts for six weeks post-partum), a life-threatening flare, surgery, a new baby, and prednisone-induced crazies. It's a lot. I am at loss for words but we are also incredibly lucky. We have a lot of support, my RRHB is amazing, and we have some of the greatest friends and family two people could ever have surrounding us.

Plus, we have him. And he's beyond words.


Jonita said...

First of all, congratulations on the birth of your little boy! I've been checking your blog for the past couple of weeks hoping to hear that the baby had arrived safely.

I can't imagine going through all of the complications that you've been through in the past couple of weeks. Having a newborn is hard enough without everything else that you're dealing with. I wish you a speedy and complete recovery!

Katerina said...

Your ordeal sounds extremely scary! I can't even imagine what you must have been feeling! I'm so glad to hear you are both doing well.

I love the picture of your little dude. So sweet!

Congratulations and I hope you get back to feeling like yourself again soon.

Alice said...

Congratulations! And how awful, but mostly congratulations!

I hope things get better, and that you get to enjoy your new little guy in the comfort of your own home.

Anonymous said...

Holy Crow girl, and congratulations! I hope the past few days since writing this have been calm and restful! Well as much as they can be with a newborn, which they can't. I just saw WL on Nov 1st and I wondered at him if you had had a kid, and in fact you were in the thick of your tubes and breastfeeding in the hospital. I do hope your body does a miraculous recovery for you -- they say breastfeeding is good for your body... sounds really scary though. I must come visit when you've had another month or 2 of motherhood. Hope they are uneventful except for burgeoning cuteness on the part of the RRBB!
xx, Sarah

Heather said...

Congrats on your little guy. He has the same birthdate as my son.

Wow, you seem to have managed that huge ordeal quite well. your appendix was bad, but this , wow.

Take care.

Anonymous said...

That's incredible - congratulations! I have no doubt the reward is worth the ordeal. You're so lucky. :D

Nathan said...

We love you Deanna! Can't wait to see you guys.

sassymonkey said...

I am so glad you updated. I've been worried. I knew you had been in the hospital for a long time. I also knew that RRBB had made an appearance.

I am very happy that you are both doing well.

Congratulations! I hope that your recovery is better and faster than you can imagine.

Kimberly said...

Congratulations on the RRBB! I'm glad to hear you've got all the support you need during this time in your life. So glad to know you're doing well in spite of the IMMENSE challenges you've faced.

Beaches said...

I've been terrified and overjoyed in fits and starts through-out your ordeal - getting updates from whomever I could - and I'm glad you found some time to lay it all out for us.

Sweet D, you've been through too much. I can not tell you how happy I am that you have your little boy - a beautiful, magical, miracle boy - to serve as a constant reminder of just how strong you really are.

Congratulations Mama. I can't wait to meet him.

Much love, Mia.


Wayne said...

Wonderful news. And wow. The whole pregnancy/delivery/newborn thing is a roller coaster ride for everyone, but you sound like your coaster had some extra loops! Glad you've come through it and can now focus on you and your new little guy. Congratulations!

Carrie Snyder said...

Love you, D.
And huge congratulations!
xox Carrie

Jasmina said...

You are so brave and the joy of having your own offspring is the greatest joy one can experience.

Congratulations to you and your family! Enjoy your new bundle of joy!

Best wishes,
Jasmina (Kat's mom)

Claire said...

I have followed your blog for a while now, and have always enjoyed your writing. I am also pregnant - 38 weeks tomorrow - and I can't believe how much you've been through in the past little while. I'm also planning to deliver at Mt Sinai - I think it is a superb hosptial, and we are so lucky to live in a city that offers us this level of healthcare.
Congratulations on your new addition!

Zesty said...

RRBB. I love it. And I love him and the both of you.

Sometimes all you can do is just cope, day by day, hour by hour. And that's fine. Sometimes, that's all you can do.

Elle said...

Congratulations on the RRBB! I'm so glad things are sorting themselves out after all you've been through. I'm sure it'll be a tough road ahead, but at the end of the day you have your baby boy and that makes all the difference.

Little Girl was born on Oct 22, too, and early at that (32 weeks). I like to think it's a good birthday :)

patricia said...

Congratulations, Deanna, for the new bundle of joy, and for being so strong and surviving such an unbelievable ordeal. So glad the fig is doing well, and that you are slowly getting better. Take care, and hoping to see you in the new year!

Melwyk said...

So glad to hear that you and your baby are safe & well. Thinking of you & hoping all goes well and you have a chance to settle in with your new baby and begin to recover.

Kailana said...

Congrats on the birth of the baby! I knew it was getting close, but I missed mention of it and I am always WAY behind on blog reading.

I hope things get better for you in other areas, too. It sounds terrible!

Finn Harvor said...

Congratulations, Deanna. I don't know you personally, but I like this site. Best wishes to you and your family.

Luanne said...

Wow Deanna...there really are no words...what a time you've had of it...I am so very glad that you and baby are okay...I hope you're feeling better and that it's not a two year recovery this time...enjoy your son - it truly is a miracle isn't it?

Katie said...

Deanna, I DEFINITELY have to check in here more often--what a stunner! I am so thrilled for you and Brian and the bambino, and I wish you speed in healing, or at the very least dealing. Love you!


Alicia said...

Deanna, I'm so glad to read that you're back at home with your RRHB and baby boy. The past weeks have been a nightmare and I know you're still coping but I'm thinking positive, happy thoughts for you all. xxoo Alicia

CanuckinDC said...

Congratulations! I hope things are leveling out for you three and you are getting some sleep! I was born, raised and educated in Canada, and now live in the States - I am so very very glad that you guys live in Canada - I am reading through the roller coaster you've been on and I'm bracing myself for the final tab - and thank god, there isn't one. Seriously, I am close to tears typing this. All the best to you three, and may your recovery be steady and speedy.

scarbie doll said...

RRBB is my RRBF. Love him. Need another snuggle session stat!

Didn't it feel good to finally barf that out onto the screen? Your first mom post! It's addictive, I warn you.

sam lamb said...

hugs and big baby love, my dear friend.

so glad to be reading your words again.