Fatigue and endless cups of tea...

There's a risk when blogging about ill health that everything ends up being doom and gloom.  I wrote this post three days ago, unsure if I wanted to post it.  But in the interest of being honest and so people understand fully what its like, I have decided to post it.  However, I do have some brighter posts on the way.

I'm used to fatigue; it's part of having Aplastic Anemia.  Its due to low red blood cells that carry oxygen around.

To give a comparison, the normal person has a hemoglobin count of between 123-174 depending on if your male or female, with an average of around 130-140.  My current count yesterday was 86.  I get a transfusion at anything under 80.

A typical cycle is 2 units (or 2 bags) of red cells. I usually transfuse at around 72. So I get a boost up to 92.  Two weeks later, I'm back to the low 70s.  The constant rollar coaster is tiring.  I know that I will get approximately two to three days of feeling good so I cram everything I can into that time.

I am now on a medication slows the drop of blood so I can squeeze out three to three and a half weeks out before I head back. Interestingly though, the slower drop leaves me more fatigued than below.  It doesn't make sense at all.  But these days, I struggle to make it through a day without lying down or sleeping.  By 3 p.m. I have a big dip in energy and by 6:30 p.m., I want to hit the sack. I have several activities every week, including volunteering, painting and a woman's group.  I have to sit during the art classes now and some weeks, I just can't go to my activities.

Like most people who deal with bone marrow conditions or chronic fatigue, I'm frustrated.  I want to be up and out but at the same time, I just want to sit down.

But luckily, I have a weapon on my side: food!  Its very noticeable how much of a difference just getting something to eat or grabbing a cup of tea can boost my energy levels.  It also doesn't matter what the food is, however, my top energy foods are coffee, tea, chocolate, cookies and cheese.  Caffeine and sugar and fat!  Not what most nutritionists recommend!  It may explain my devotion to the Sausage McMuffin and medium coffee from McDonalds after I've done the school run.

I won't give up tea but I am trying to eat better.  Trying to get more nutrients, like this pot of vegetable chowder from Lulu the Baker I made this morning (please ignore the massive amounts of cheese its has).  I do feel better when I get my vitamins and anti-oxidants.

But no matter what I eat, it doesn't matter if I get a bit chubby.  The transplant doctors want me to be heavier than normal for the transplant.  So far, I've put on 15 lbs since last Christmas.  So in the words of the beloved chef, Julia Child, "Bon appetit!"

Breaking News...

I received an email from my transplant nurse.  Negotiations are finished.  My transplant will occur on April 24th and I will move to Calgary on April 17 or 18!  Time to rev up preparations.

My main focus right now is getting down my iron levels.  High iron is a result of blood transfusions. By our best guesses, I'm up around 100 transfusions but it may be a bit more. The "normal" range of ferritin levels in the body (which is a reflection of the iron in the body) is 10 – 250 ng/mL.  My levels are usually over 1650 (they don't bother counting above this range).  However this number doesn't really mean anything because the body will dramatically increase ferritin levels when the body is in crisis (called acute reactant phase) nor does it reflect how much iron is stored in my organs.

And there is the problem...iron stored in the organs.  Left unchecked, it causes organ damage and increased infections.  And studies have shown that reducing ferritin levels in the body to under 1000 ng/ml increases the success of transplants.  Iron is a heavy metal and the body cannot get rid of it except through blood loss.

So what do I do?

                                     (The black parts on my leg are either scarring or tape marks)

Five to six days a week, I wear a pump that is hooked up to a needle in my leg.  The medication inside (Desferal) binds to the iron in my body and gets rid of it through the waste system.  This is an effective way to get rid of iron but it is difficult.  Desferal, traditionally, does not get a lot of compliance from patients.  After all, a person has to jab a needle into themselves everyday...not a natural thing!  The needles are expensive ($50-60/week for my specialty needles), the medication is expensive ($280/week but I have coverage) and the pumps are expensive ($120/week).  Its hard to sleep with and it causes scarring and lumps that last for months. For many years, I was a low-compliance patient.  But for the last several months, I have sucked it up.  This is one of the things I can do to make a difference to the outcome of my transplant.

In the coming days, I will update y'all on my other preparations.

Lots of love hugs and kisses

E

It's a mixed-up bag....

Everybody has been super excited about my match.  Its a blessing to have so much enthusiasm BUT hard to share it.  Yes, that is absolutely ungrateful and pessimistic. Trust me when I say I am happy to have such a good match and I'm excited about my potential future without this condition.

Two things hold me back though....fear of the known and fear of the unknown.

I know this is going to be hard.  I've been through enough chemo treatments to know that it's not fun. I expect this to be ten-fold of my prior experiences. I know all the potential complications: infections, organ damage, host vs. graft disease, allergic reactions, depression, chemo brain etc. Sometimes ignorance is bliss. And I know that I'm a bad patient...non-compliant is the term.  Non-compliant and on high doses of steroids.  Oh, how I pity the nurses!

At the same time, I don't know which battles I will have to fight.  I simply have to prepare for them all and just wait and see.  Not easy for a control freak.

Sometimes I doubt my stamina to get through the hurdles.  Previously, I have gotten depressed enough in the hospital to stop eating and I refused treatment. But I one thing I have learned, just when I think I'm not strong enough, I manage to pull from deeper within me.

One of the big things is, that it's hard to imagine my life after transplant.  Aplastic anemia has been with me for almost half my life.  Its hard to remember life before treatments, transfusions and this condition.  But one image that sticks with me, for some unknown reason, is the feeling of running on a soccer pitch. Coming away with big Bertha bruises because I was such a enthusiastic defense player. I'd like to feel that energy again, that ability to chase a ball....just because I can.

I'm starting a bucket list for post-transplant.  Hopefully this will encourage me though some of the hard times. I would like to weight lift again, get the tattoo I've always wanted, get on a plane and go away, ride a bicycle and tear up my blood requisitions.  I'm going to continue the list as I go along....the sky is the limit, right?  When I asked Madeleine what she wanted to go on the bucket list, she added skating.  That's good.  I love skating.  I know she will add beach trips and swimming and playing in the park....all good.

But what will make the biggest difference, is all of my cheerleaders.  And there are so many!!!  David leads the pack and I am carried up by their love and support.  Even though there are times when I'm scared, especially late at night, I know everything will be ok; hard maybe, but definitely ok.

Signing off with lots of love, hugs and kisses,
E

And the gun goes off.....

Allo, Allo to all my friends and family; or at least to those who are reading this blog.  Its early morning and as usual I'm up too blinking early.  But this is a great opportunity to start this blog.

As you will probably already understand, this is my blog to document my journey through the bone marrow transplant.  I sometimes incorrectly assume that everyone knows whats going on in my life.  The grapevine doesn't always work and I don't want to get in trouble for not keeping everyone up to date.  Also I hate talking on the phone....really hate talking on the phone...

I have a bone marrow condition called Aplastic Anemia.  Its rare and its deadly for many people.  While medicine continues to improve always, the only known cure is a bone marrow transplant.  I'll post a link for people who want to know more.  This is the one time I would not recommend Wikipedia for your answers http://www.aamds.org/

In some ways, I guess I'm lucky that I found out early.  Diagnosed at a level that doesn't have a classification.  I've now been living with this condition for 15 to 17 years.  I have considered bone marrow transplant twice before but essentially I wasn't sick enough yet.

Now I'm sick enough, apparently anyway.  I mostly feel like I don't have time to be sick and no time to do the transplant.

We have been actively looking for a donor since October.  Difficult because I have rare alleles.....yeh I don't really understand what that means either.  But what I do know is that the team in Calgary led by Alijia, my transplant nurse has been searching vigorously for any kind of match.  We had two false starts.  Finding donors that eventually melted away.  Like chasing a mirage.....  But now I have a "9/10 permissible mismatch".  A perfect match.  Yeh, I was confused too! I know 9/10 isn't a perfect match but apparently the one mismatch doesn't matter to the transplant.  I thought they all mattered....hmmmm.

Currently its supposed to go ahead for the middle of April but we are in negotiations with the donor.  The transplant will be in Calgary. I will be in the hospital for approximately four weeks and in lodging nearby for the other two months.

So for now, I'll sign off and post up later.

Lots of love, hugs and kisses,
E