On a Good Note...

It's a shame how a 4 year old needs to adapt to a "sick" mommy. It's a little unfair, if you ask me. But Gage is doing great and is trotting along just fine through all of my ups and downs!

I'd like to think and I'm sure he is thinking that he's taking care of me....just the other week, he stood up for me at Daycare when a little boy went to demonstrate his kicking karate moves on me. I just simply ignored his attempt to take me down(playfully), while Gage stood up, ran over and said, "Hey, you can't kick my mom, she's sick!"
The boys mom looked at us a little "dumb founded", while I blushed and secretly felt very proud of my son! lol...

I also get this same reminder, "Remember ....you can't pick me up!" as he hoists himself high up into and out of our vehicle! It's the little things that you take for granted everyday when you have a toddler. So, Gage is helping me realize that if I'm more patient with him then he will show himself up....what more could I ask for! Now we're on to the 911 calling and address giving that is a going a little slower...in due time, I guess!

I just really hope that when he becomes an adult , his memories of me won't be of how his mom was always tired, weak and grouchy but more along the lines of how I had an illness(true), but that I was strong, a darn good snuggler and helped him shape his indpendance.

Where did I go...?

Sorry I've been MIA for 4+ months! I don't where the time goes, but it's going fast.
I meant to update you with this weeks ago, but....like I said, time goes fast, anyhow I'm here now.

I'm doing fairly well. I've been in to see the transplant team, June 6, and my blood work and ultrasound show things are about the same. However, they are concerned with the abundance of gastric varices in my abdomen. These are the ( thin walled) tiny veins that carry high blood flow, and pressure. Mainly because my liver is so scarred that blood can't penetrate through anymore and therefore diverts itself to other organs/areas of the body. The team is concerned of a rupture occurring.
Sooo, I've now been told I cant lift or carry anyone or anything over 15lbs! Yup, 15lbs. My jaw almost hit the floor! I thought he was joking at first....I mean come on, 15lbs isn't a whole heck of a lot and it just seemed a little ridiculous to me. Nope...totally serious...there was no joking going on in that freezing, air conditioned room! I think I was the only one laughing.

The Dr. continued to explain that a rupture could happen and most people don't usually survive the outcome. I think it was a 50% mortality rate for the first hemorrhage and 80%-90% if I make it through and suffer another! And on and on and on........and then it became clear. This is serious. And I was no longer laughing but nearly in tears. I was so sad, mainly for Gage. How was I going to tell him I can 't pick him up or carry him, however short the distance! I'm angry. I know he's 4yr old now...but he's still my "baby" in my eyes! The Dr. said, "you can still snuggle with him." Yeah, sure....I mean of course. He was right, but I still couldn't help but feel this overwhelming sensation of sadness come ripping through my heart.

I'm not allowed to have a job outside of the house. Most of my jobs at home involve lifting and carrying things around all day....so now what am I supposed to do? I feel a little useless to say the least and it's driving me bonkers! So, let me just recap.... this illness makes me extremely fatigued and exhausted more as each day comes and goes, it makes me lose muscle mass(especially now), can't pick up /carry anything over 15lbs, not to thrilled about my situation at the moment!

Anyhow....as summer has finally arrived, I will be doing my damndest to enjoy it with my loved ones!!

The Search Begins : Feb. 4, 2011

Today Darren and I spent a couple of hours going over what happens next with my wonderful co-ordinator, Tara. It's official now. The papers are signed. I am on the list!

I feel like I just woke up from a dream. I can't be in denial anymore about this. I have a pager clipped on my belt now that reminds me I am one beep away from starting over. It still not that simple though...

Let me take you back to Jan. 31, the day of my regular scheduled follow up with the Transplant team. After looking over my recent blood work,Gastroscopy results,calculations...yes, there is a bit of math involved if you can believe it, and talking about my case at 'rounds'(with the other Doctors etc.), they all decided that it was time to activate me on the waiting list.
I was shocked, anxious, relieved, overwhelmed, terrified, and just sort of...blank. I know all too well what it's like to feel one emotion to the fullest but not twenty all at the same time!

How long do I wait? Well, it's difficult to predict. I don't know how many times I've heard that before...lol. Some people are matched with a suitable donor immediately, while others wait for well over a year. The average wait is from 1 to 12 months but in my case it may be longer. They don't know why but finding a donor with a B+ blood type is few and far between. The Team has not had many in the last couple of years. Ya know, even though I've known this fact for quite some time now, it's still hard to swallow.
How long I wait will depend on how easy I am to match, and the seriousness of my condition at the time.

There is no order to the wait list- it's not first come, first served. When an organ is available, the list is checked to find the best possible match at the time. Some people are harder to match because of their size and/or blood type, and unfortunately this is where I fall short (re:blood type).

So now I am supposed to be getting my overnight bag ready and our laid out plans ready for Gage, because even though it looks like I could be waiting for months and months...looks can be deceiving.

On another note: I also learned that I have Gastric varicies in my stomach. These are tiny blood vessels that have become enlarged due to blood trying to travel to other organs because it can't flow through my scarred liver. They have very thin walls and carry high pressure. There is a potential danger that they may break or burst, causing a serious bleeding problem in my upper stomach area. I think it's called a variceal bleed. So, they doctors want me to go on a beta-blocker called Propranolol, a type of heart medication. Their hoping to slow down my heart rate therefore lessening the chance of a variceal bleed by about 20 percent.

Well, I think that's about all I can handle for now. I've had a lot to take in and adjust to in the last few days...I'm pooped:)

Love you all....

SOTC....

Sounds like some sort of Squad Team don't ya think!?? Lol
Well...it's not. The SOTC stands for Solid Organ Transplant Clinic (pre-assessment services). This is BC Transplant's Pre-Assessment Clinic's new & improved name. Along with a new name, comes a new location as well. Not new to us though. Luckily it's not very far, only 5 blocks away! Dr. Weiss's office is also in the building. He's my GI Dr. So it's all the same to me, really.
Although.. the words 'solid organ' just don't sound very tasteful!Lol.It's going to take me awhile to transition to this new name for sure. I don't like change...lol...can you tell? So, if you hear me talk about the SOTC, don't worry, I'm not in trouble with the law!

Hope everyone had a fabulous Christmas & New Year's? Ours was hospital free and blissful! Here's to another hopeful year of the same......

xoro

In and Out

I had my Gastroscopy yesterday. It's the procedure I had mentioned in an earlier post. It's where a tube is inserted into the esophagus and looks for discrepencies in your stomach! It's awful, but as with most things...I had no choice! It went well. Dr. says I don't need to have the Banding procedure on my veins! This is very good! He took a biopsy of "something" down there as well but won't know results until later. Not too worried about that though. I do however, have Gastritis. It's just a fancy name for inflammation of the stomach lining. Now I can add a new medication to my repertoire...yay! I'm going to have to buy a XLJUMBO size pill container..hahaha...
I really don't know how many more meds I can handle...it's like having another meal at meal times. Super filling!

So, I have to stay away from spicy/acidic foods and drinks to help ease pain, which is sad because I was just starting to like a little spice...not to mention coffee!!

Until next time...xxoo

Winter Wonderland

I love our weather. No...I don't want to be a weather girl,ha,ha,!! There's just something very comforting about throwing on layers of clothes and snuggling under a pile of warm blankets. Trust me when I say this doesn't sound like the normal me. But that's just it...I'm not normal!! My hot flashes have subsided tremendously in the last month. I now feel very cold, bone chilling cold, throughout my entire body. It's sort of par for the course, really. I can go through extreme highs and lows in body temperature. It's sort of like being in the early stages of Menopause, and yes, with that comes extreme highs and lows in my moods as well! I'm actually quite comfortable now with labeling myself moody, lol....

Body and mind start competing against each other. Circulation is not so good at the moment. I have some Petechiae on my thighs and it's painful and get's itchy if I stand for long periods at a time. Petechiae occurs in my body for a number of reasons..one, being deficient in Vitamin K, and also poor blood clotting factors. It shows itself as tiny clusters of bruises and can take anywhere from a month to 4 months to dissipate.

So, this kind of sucks right now but things could always be worse! I think I should go eat a donut now! Ha...
OOoooo...better yet, thanks to my dearest mommy I have a fruit cake sitting in my pantry just dying to be eaten!! Lol! Word of the wise...never in passing conversation tell my mom you have a weakness for Christmas fruit cake with marzipan icing! Next thing ya know she'll arrive at your door with the entire loaf! Sans the marzipan icing mind you...bah!

Escape from Reality

Darren and I went to the Gun Range the other day to blow off some steam. I thought it would help to release all these pent up emotions flowing through my body. Feelings of anger, sadness and well...just being scared,really. Firing bullets as fast as I could and as much as I wanted at a green guy on a piece of paper was not what I expected! I wanted to stop and leave, how is this fun? I felt even more scared and a rush took over me- I felt all flushed and couldn't see because my eyes were drowning in my tears. It was a different kind of scared though....a kind that made me want to stand up to it and show it who's boss.

So, I did. I didn't leave. I stopped crying and faced my fear head on! We ended up closing the Range down and I walked away feeling proud. LOL..now this doesn't mean I 'm going to do it again anytime soon but if I can face this challenge head on then I can face all of this PSC hoopla....

Next time I want to blow off steam though I think I'll try sipping Pina Coladas on Maui's white sandy beaches!!