It's up to them now.

I just finished collating all he data to send to Chicago.  There was a lot of it.  And although it is now all done as best as I can do it I do feel nervous for two reasons.

First I'm worried that I might not get accepted into the program.  Although I feel as though I'm a good candidate there is a lot of tests to be completed and I don't know which ones are more important and what sort of results they are looking for.  Although I have researched it extensively, I am not a doctor, and I do not understand many of the tests they are after.  I'll just have to wait and see.

If I don't get accepted I will be very disappointed.  Although I have tried not to.  I have invested a lot of emotional energy into this process as well as time.  As I said before, I need to be proactive in dealing with my medical issues for my own mental health.  Being rejected from the trial would be very upsetting, and to be truthful I don't know how I'd cope with that.  I would like to think that I'd be able to pick myself back up, dust myself down and soldier on, but reality is sometimes very different.  Being realistic I think it would take time to get over such news.

Second, what if I do get accepted?  What of the risks.  For me there is an added risk because I have a brain implant.  From what I understand it is not an exclusion criteria, but it is a concern, and they might have to take it out.  But if that is the case, then that is what has to be done.

And although I have come to terms with my decision from a logical and a rational point of view, it has only been the last couple of days that the emotional point of view has surfaced.  It always turns up eventually, and for me that time was now.  It is a little harder to resolve in my head, but none the less it is still there.  It has not deterred me from wanting this procedure, but it cannot be ignored.  I will deal with it in my own time.

For now though, there is nothing I can do about waiting for the feedback from Chicago.  But at least I now have it all done and I can look forward to Christmas.  On another note, my legs are killing me today. I stood up for two hours cooking a BBQ for my daughters class Christmas party and I'm paying for it now.  But it was worth it.  Until next time, stay well:)

If I'm Glowing, Just Turn me Off.

In the last two weeks I have had a head CT, a sinus CT, a chest x-ray and a KUB (Kidneys Ureter and Bladder.)  After being exposed to all that radiation I wouldn't be surprised if I glow in the dark!  But I'm hoping it will not be in vain.  After all, we don't do these things because they are easy, we do them because they are worth it.

I guess I do have a point to make.  All things being equal, even when you are pretty good having a chronic disease is still pretty time consuming, let alone two.  I have had a pretty busy couple of weeks and it's not letting up just yet.  To let you know as well as the x-rays above I have also had 4 appointments with specialists, 3 GP appointments, 2 physio appointments, an ECG and an echocardiogram.  And left for this week is a 1 physio appointment, my IVIG treatment, 1 specialist appointment, a pulmonary function analysis, all the blood work and urine analysis I talked about last week and a 24 hour urine test for my nephrologist.

Now it might sound like I am having a bit of a whinge, but I'm trying to illustrate my point.  At the moment I am pretty well.  I recently had a flare up of my CIDP, but aside from that my depression symptoms have never been better, my tremor is under control and I am asymptomatic with my kidney stones and according to my x-ray I am stone free.

I understand that a few of these items are to do with me trying to get on the trial in Chicago, but if it's not that it's something else.  So spare a thought for the chronically ill.  Try doing a full time job with all that going on.  On top of that, there is living with your disease that is also tiring.  And all the other inconveniences.  Remember your pills, what you can eat, what you can't eat, what you can and can't drink, exercises etc.....  Oh yeah, then there is also all the research into your symptoms, disease(s), treatments, side effects etc.....

Living like this is a full time job.  It's exhausting and tiring.  And I think I talk for all patients when I say this.  We didn't ask for are disease, yet we have no choice but to deal with it.  And I have to say that most patients I have had the pleasure of talking to are very brave and resilient.  But patients are  people too, and just like all people they have bad days and bad moods.  So if we seem irritable, lethargic, grumpy or just generally pissed off, cut us some slack.  We don't mean it and we are dealing with a lot.  Until next time, stay well:)

Update

I have a bit of a skip in my step today.  I feel that things are starting to get moving, but I have to admit, it isn't going to be easy.  One of the things I am trying to do is to 'pre-qualify' for the stem cell transplant whilst I am still in Australia.  I don't want to go all the way to Chicago, only to find out that I am not a suitable candidate and I get sent packing back to Australia with my tail between my legs.

So right now I have been asked to do a lot of tests.  And I mean a lot of tests.  I have listed them here:-

Blood Work and Urinalysis

Immunoglobulins quantitative IgG/M/A

Lymphocyte phenotypes (CD3,4,8, CD 56, CD 20)

Varicella zoster virus (VZV)

Herpes simplex virus HSV

Cytomegalovirus by polymerase chain reaction (CMV by PCR)

Urinalysis (UA)

Uric acid

Fibrinogen Antigen Assays/Prothrombin Time (PT)/Partial Thromboplastin Time (PTT)

Anti bodies; MAG, GM1, GM2, GD1b, sulfatide, GALOP

Serum protein electrophoresis (SPEP)

Immunofixation Electrophorisis (IFE)

Anti-Hu anti bodies

Cytoplasmic antineutrophil cytoplasmic antibodies (C-ANCA)

Antinuclear antibody (ANA) panel to include Anti DS DNA, SSA, SSB

Anti-gliadin

Anti-transglutaminase

Rheumatoid Factor

C-reactive protein (CRP)

Sedimentation rate

Angiotensin-converting enzyme (ACE)

Cryoglobulin

Triiodothyronine, Thyroxine, Thyroid-stimulating Hormone (T3, T4, TSH)

Thiamine (vitamin B1)

Vitamin B12

HIV

Hepatitis B 

Human T-lymphotropic virus Type I (HTLV-1)

Glycated hemoglobin (HbA1c)

Prostate-specific antigen (PSA)

Other Tests

Pulmonary function Test

Echocardiogram

CT sinus’

EKG

Chest X-ray

MRI

Lumbar puncture

I have been very busy getting my head around what they are all for, which has been really hard seeing as though my GP didn't know what about a third of them were.  Luckily, Dr Google seemed to have information on most of them.

Although the task is daunting, it is nice to finally feel like I am doing something.  The worst feeling is just standing still waiting for something.  An appointment, a test, an answer, anything.  Anyway, forgive me if my blogging is a little light in the short term, I've got some work to do!  

Tomorrow and Monday I will get the other tests done, and hopefully by then I will have figured out the blood tests so I can get them done, and have the results to Chicago by the end of next week.  But I know how it works, I will settle for by Christmas.  The other benefit I have is that I have already done the MRI and lumbar puncture ages ago, so these results will do.

I will keep you all updated as things progress.  Stay well:)