bad days

It's been hard, watching the progression of Brian's disease. Not that things are changing rapidly, but the last few weeks we've noticed a trend. What used to be his bad days are now his good days. Does that make sense? On a bad day, he'd be tired and winded, feel nauseated and look pale. But recently that's been the norm. On a bad day he's been feeling worse. Sometimes MUCH worse.

Just over two weeks ago his numbers started a decline. I thought nothing of it this time. Every other time I'd panicked, thinking he'd have to have a "blitz" of treatments (three treatments in one week, usually). But every time the numbers came up again on their own. I guess you can say I got overconfident that it would work itself out. Surprise, surprise - his platelet count dropped down to 78. And I didn't even notice. I've been less and less diligent with checking his lab numbers, so it took us by surprise. To remind you, his platelet count was in the 60's when he was rushed to VGH the first time. So it was pretty close for a second time. 6 treatments later (make that 7, counting today's regular treatment) and the numbers still aren't where they should be.

I'm frustrated. I feel so helpless, so STUCK. I want to get off this roller coaster, or I want to be useful somehow, and help Brian get better. But there's nothing I can do, except try to support him. It's not enough.

very bad news indeed

I just got a call from my favorite Mother in law (even if I had more than one, I just KNOW she'd be my favorite). Brian was at the hospital having his weekly PLEX treatment and the kids were with Gramma. I've been hit by a nasty flu bug that's pretty much landed me flat on my back! I can't remember the last time I felt so miserable. Cold, then hot, sore throat, nauseated, headaches, body aches, fevers... But I digress...

Brian just picked the kids up from Gramma's house and they're on their way home. She phoned me because she wasn't sure Brian would tell me himself. He got bad news today (we've dealt with it before, but I'm nervous anyway) His platelet counts are 80 today. 80! To put it in perspective, again, platelets are supposed to be anywhere from 150 - 400. At about 60 you start to bleed out. Scary. So he's going to be going back to hospital Wednesday and Friday, she tells me. We're having a "blitz week" of PLEX treatments. I hate those kinds of weeks... The fact that he can't work 3 out of 5 days adds an extra stress. Money stress.

claw

What's new on our front? Well, good and bad (as usual!). Brian and I were just at the hospital today. We got a call last night that he was booked for a test - nice of them to give us notice! A dye had to be inserted into the veins in his arm to see if he can have surgery to create a fistula in the near future. We haven't spoken to the specialist but we already know the bad news - his veins are just too small! They may still be able to do a fistula in his upper arm, but it requires much more work and much more time off to heal! So I'm praying something miraculous happens in the meantime.

We have also been waiting to hear about the genetic testing. It was done months ago. There is a very good chance his type of Atypical HUS is genetic, and could be passed down to my kids. First they'd test his siblings, if he tests positive for the genetic code, to see if any of them carry the same trait. THEN my kids would get tested. I have been waiting on pins and needles to hear those results. They were supposed to come in last Friday, but we've heard nothing.

I've made this post long enough after weeks (months?) of silence. Thanks for being "out there".

On

- On the Brian front: Amazingly enough, he is doing really well! With a few treatments postponed due to holidays and one appointment accidentally missed, his numbers are holding steady. We're very happy about that, as you can imagine.

- In the next few weeks Brian will be seeing a surgeon, who will set up an appointment for the fistula to be created in his arm. This means he'll be able to have the tubes taken out of his chest, which decreases the possibility of infection (a huge concern, especially since they go directly to his heart) This ALSO means easier access when blood needs to be taken, or when he needs a future PLEX treatment. but it takes months for it to be ready after surgery, so it will be ready for use in a few months.


- My time at the keyboard is coming to and end, I have two kids crawling on me. Thus the reason my blog has been abandoned, for the most part! Maybe I'll add that to my list of things to do while the kids are in school!!

Back To Brian

It's been awhile since I posted anything about where we're at, medically.

This past week we had a meeting with the head of the Hematology team. I've been wanting to ask her some very serious questions but I've been afraid of the answers. One of the questions involves what our future is likely to look like, where Brian is concerned. I realize they know very little about the form of HUS Brian has, but I want an idea about what to expect, so nothing surprises us. Well, she didn't give me a very encouraging answer. Basically, she's sure his disease will follow the pattern of his cousins, whose case they are "investigating" so they have an idea of how to treat Brian's case. This answer means a few things for us. It means Brian's kidneys will eventually shut down, and he'll end up on dialysis and some point. And it means that even if he DOES get a kidney transplant, the disease will still run rampant in his blood and it will just attack the new kidneys. It means a very, very long and discouraging road for us.

The other question I asked was about the possibility the disease is genetic. Meaning: Is there a chance my kids will also have the same genetic disposition to the disease. The answer: yes. There is a very high chance that this disease is hereditary, given what's happened so far. So my kids will have to be tested at some point if Brian's. As a Mom, the nightmares of having sick kids started the instant I heard that. I have been in a constant state of panic since hearing that. Of course, we don't have the genetic test results back yet so we don't know for sure, but her thought is that the test will come back positive for familial HUS. It's a very, VERY scary thing for me and I haven't done very well at handling it.

Brian had a "Vortex" placed in his chest. It's an uncommon type of a portacath that has two "tubes" (I don't know the proper terminology) coming out. The nurses have struggled so much with his veins that they had to do SOMETHING to make it easier. Every three days he has to get the line flushed so infection won't occur, so we've added that to our "medical calendar". At least he only has to go to the local hospital, not an hour and a half away! And so far he's seeming to do quite well receiving a PLEX treatment every 7 days. I don't know that we could handle any more than that (the week where he had three PLEX treatments in one week was brutal!!). But we'll do what we must.

This is getting long and I'm finding myself distracted, so I'll end it there!

Discouraged

The past few weeks I have had way too many sleepless nights and I'm afraid it's catching up to me. Brian had surgery on Monday, something I was anxious about although it was a pretty standard surgery. It's a sign of what "normal life" will look like for us and I've been trying to live in denial a bit. There's no denying it now that he has a portacath and two tubes permanently hanging out of his chest.

After having three treatments in one week, his numbers went back up again - to our relief. We realized that he can't have a treatment every 14 days, he needs them more frequently than that. So they're currently trying every 10 days and if that doesn't work, he'll have a treatment once a week.  He still has to have blood work two times a week, and now with a portacath in he has to have it flushed every three days. What a busy medical schedule he has! All of this means missed work, and it also means that he needs our car. That leaves me WITHOUT a car and without a way to go to appointments, drive Mercy to and from school (on really chilly days like today!) or run any errands I may have. It's starting to frustrate me.

Another daily struggle we've had is the childcare issue. If I want to go to the hospital WITH Brian, well, my choices are limited. Brian and I didn't like the idea of having to spend the day in Vancouver with the kiddos and no money in this weather, so on Monday Brian drove HIMSELF to VGH for his surgery and treatment. I didn't like that at all...

So currently we're trying to figure out all our options. Transportation. Income. Childcare. It's all in the works but it's all looking pretty... well, discouraging. Pray something good comes our way soon - we need a little bit of light right now!

Prayer

Needed... again. Brian's numbers are not good at all right now. His platelet count is dropping significantly every day. I convinced him to get his blood checked tomorrow morning because I'm concerned. The hospital phoned and they want to see him three times next week. They were actually hoping to convince him to come in TOMORROW, but he is being difficult and he refused. I'm uncomfortable with that, but it's his choice. At least he agreed to have blood drawn to see where he's at. Tonight he doesn't look very good and I am anxious about it. I probably won't get much sleep tonight.
Pray I have peace, and pray that his numbers hold steady until his PLEX Monday, and that they jump up with his treatments. Also pray that he can finally manage to put some hours in at work - this is so hard on us financially!

Thanks friends...