My Monthly Dose of Boring

Anyone with CIDP, or any autoimmune disease that requires Intravenous Immunoglobulin (IVIG) infusions will know that there is really not that much to look forward to.  Just to let you know what it is like, you sit in one of those comfortable hospital recliners while a nurse sticks you with an IV and you sit there all day whilst watching the drip, drip, drip of the IVIG as it is slowly infused into your body over six hours.

I was hoping to write this post whilst I was in the chair, but I cannot move the hand that the IV is located in and typing with one hand is too hard.  Unfortunately, with my poor venous access and the viscosity of the IVIG, even the slightest movement sends the iMed machine into distress so the nurse has to come and fix it.

Yes, the process is boring.  Yes, it is long.  Yes, you do feel like crap afterwards and yes, that day for me is tomorrow.  I feel as if I have started this post off on a really negative note, but two things.  First, it is not all bad.  Second, there are things you can do to limit the boredom. Now there are not many people who have IVIG, but there are many people who have lengthy infusion treatments, and this should go a long way to helping them too.

Firstly, decent preparation.  I find that if I have got the body going and the heart pumping a bit before I get to the hospital.  If this is the case, I find that my veins are bigger which makes it easier for the nurse to put in the IV and less likely to have problems during the infusion.  So on IVIG mornings I like to get up and do a bit of exercise (for me, either a session with my personal trainer, or a swim.)  I like a big breakfast and lots of fluids to up the blood volume and vein size.  Lastly I pump a stress ball all the way to hospital to really get the veins up.  It is also important to stay warm so your veins don't shrink inside your arms.

Secondly, combating the boredom.  Yes, six hours of nothing is really boring, and seeing as I can't use one arm I keep myself from getting bored by watching movies.  Right now I am downloading three movies onto my computer for tomorrow.  I bet you wish you knew what they were, but I'm not telling;)
I also sleep sometimes, read a book, or talk to the other patients.

Thirdly, the nausea.  Although I have never actually been sick I have still felt nauseated.  I find a simple remedy for this is to keep snacking.  The hospital supplies a never ending supply of cheese and crackers, so I am always eating them.  I used to bring a big bag of M and M's with me but they used to only last 20 minutes plus the nurses used to eat them.

Fourthly, the headache.  Nasty headaches are a side effect of IVIG, and prevention is the best cure.  IVIG pushes up your blood volume, which increases your blood pressure.  Your body combats this by expelling water, causing dehydration.  Blood pressure plus dehydration equals headache.  To combat this, drink plenty of water, take pain relief (neurofen works best for me) and if all elso fails ask the doctor for a script of blood pressure meds, a beta blocker like inderal works best.

Lastly, a couple of general pieces of advice.  Get someone to drive you or catch a cab.  There is a good chance you won't feel like driving home. Second, be nice to the nurses.  They do a great job and do the best they can.  If you are not nice to them they will not be nice back to you.  If I feel up to it I willl let you know how it went tomorrow.  Until then, stay well:)

Another mistake... Or was it?

When I wrote the post "We learn from our mistakes", there was no doubt in my mind that the doctor was at fault and I should have confronted him about it.  However, this story beats a different drum.

The first medical problem I ever had was my kidney disorder, cystinuria, which was diagnosed in 1994.  Unfortunately, as you would know if you were ever a sufferer, the treatments are not perfect and often carry some nasty side effects.  So one really has to weigh up the cost versus reward.

One such treatment for cystinuria is a drug called penicillamine.  Now penicillamine has a list of side effects as long as your arm, but is considered the best drug for treating cystinuria.  I know now that a side effect of this drug is peripheral neuropathy (CIDP), but back then it was not communicated to me neither was it listed in the long list of side effects that came with each box of drugs.

So I took the drug and lo and behold I now have CIDP.  A mistake I have paid for the last ten years.  But was it a mistake?

Firstly, the number of cases linking penicillamine to CIDP were very few, and a search by my doctors post my diagnosis did not reveal one case of a cystinuria patient on penicillamine contracting CIDP.  And if the pharmaceutical company that manufactured the drug did not list CIDP as a side effect, how was my doctor ever going to know about it?

This point helped me rationalise in my mind that my doctor, and even the pharmaceutical company were not negligent in my contracting CIDP.  The irony is at the time I talked to a lawyer (informally) and his reply was "You have a case".  I don't think I could live with my self if I decided to sue in this case, as I really feel based on what we knew at the time, no party involved was negligent.

Secondly, if CIDP had been listed as a side effect would it have changed anything?  Honestly, no.  At the time I took the drug I had no idea what CIDP was.  It would have just been another name on the list of side effects, and it would not have altered my decision.

So was it a mistake?  I say no, it was more like a horrible accident, and the blame in my opinion, falls with no one.  After all, if a meteorite falls on your head do you get to sue NASA for failing to detect and warn you about it?

Sadly, these days it is too easy to apportion blame, and realistically an individuals shallow victory only adds to the detriment of society.  After all, next time you whinge about your doctors bill is, ask him how much his malpractice insurance is.  In my case, I could have sued, I could have won, but I'm glad I didn't.  Until next time, stay well:)

My story

Below is my story (medically) so far. I wrote it for the WEMOVE website, so bear in mind that it is aimed at people with movement disorders, but I think it is an entertaining and accurate account of where I have been. It is a little longer than normal, but it is a good read;)

At the young age of just 18 I must have angered the gods. I was young, had just finished school and started university. I was naive, full of dreams and my aspirations for the future were limitless. In short I was ten foot tall and bullet proof. Then I made a horrible mistake. I said these ever-fateful words to a close family friend when he showed concern about me. "I am 18 years old, I am in perfect health. I exercise regularly and eat well. What could possibly go wrong?" Well, the gods didn't like it so one week later I had my first (of many) trips to the hospital.

I hear you ask, “Why did you need to go to hospital?” Well, it actually has nothing to do with a movement disorder, but I will get to that. I had a kidney stone. The first of three I had that year. I was diagnosed with a condition known as cystinuria, which means I have to battle kidney stones regularly. Sometimes I won, mostly I lost.

In the year 2000 things got worse when I was diagnosed with a condition known as Chronic Inflammatory Demyelinating Polyneuropathy. Wow, try saying that ten times in a row quickly. I will simply refer to it as CIDP.  It was a very stressful time.  It took an eternity to diagnose, and once diagnosed nobody knew what caused it although I have a few theories.

The kidney stones were still a big problem for me, and on top of that I now had CIDP a peripheral nerve disorder which left me with weakness and slowness in my arms and legs. At the time I was trying to lead a normal life, I was not accepting of my conditions and as a result I was bitter and resentful of the ailments I had been given.

Two years later it would get even worse when I was diagnosed with essential tremor (ET). Truth be known I had actually had the tremor for since I was about 15, but it had never really bothered me. I was always able to do the things I wanted to with the minimum of fuss, but that was now changing. I found it difficult to eat, drink and write. I felt this and the CIDP the worst because it was in your face 24/7. It could not be ignored, no matter how hard I tried.

Although other things in my life were going OK, medically, I was about to embark on five years of hell. I tried a variety of treatments for CIDP and ET with limited or no success. In 2006 I had complications from kidney surgery. I was laid up in hospital for 3 weeks and over three months I had seven operations. It was the worst time of my life, but also it was turning point for me.

When it was all over I started seeing a psychologist who diagnosed me with depression, probably caused by all I had been through. I realized that I could no longer refuse to accept my conditions, and instead I decided to take charge. I learnt about the conditions and treatment options and where applicable I changed doctors or even found some new ones. For example I now consult with two neurologists and two urologists, not one. I also changed my nephrologist (Kidney specialist) completely.

I also took time to work on my mental health and let myself know that what I had really did suck and it wasn’t fair. The validation of that point has really been a godsend for me. Now, I no longer live in denial about it all. I am not cured of my problems, but now I am accepting of my limitations and I am much more in control of my conditions. Recently I just had DBS to help with the tremor which has been great, but I know there is still a long way to go. I have blogged about my experiences as well. They are at shakesandstones.blogspot.com. Thank you all for taking the time to read, take care and stay wellJ

My Brain Needs Stimulating

Hi all, I hope you are all in good health. My last four posts have all been about preparing for surgery in order to make you stay as smooth as possible and assist recovery. I was then going to write about how to cope with situations whilst you are actually in hospital. However, I will be having Deep Brain Stimulation surgery for essential tremor in about six weeks and have just started going through the testing process in order to be prepared for my day under the knife, and I thought it would be extremely valuable to write about my experiences as they happened.

So I feel a good place to start my DBS series is to answer the question "why am I having it?" After all, my life is not in danger without the surgery and my friends and family think I look fine and interact with society perfectly well and they understand my affliction and it doesn't bother them. Well it bothers me! I live with it 24/7 and I want it gone. I think that the best way for people to get a better understanding of what a tremor patient has to live with is to give you a snap shot of my morning. You can try it if you like:-

1. Alarm goes off. Accidentally knock it off the bed side table trying to turn it off.
2. Shower - Nearly scold then freeze yourself trying to get the water temp right.
3. Shower - Drop soap three times.
4. Shower - Poke self in eye trying to wash hair and face.
5. Shaving - Yeah, you can figure this one out yourself.
6. Teeth - Put too much tooth paste on brush, and get some on the bench.
7. Teeth - Clean up bence.
8. Teeth - Ouch! Poke self in back of mouth with brush.
9. Clothes - Try buttoning shirt, give up and wear a t-shirt.
10. Clothes - Slip-on shoes only, laces too hard.
11. Kids - Dressing son too hard, send to his mother.
12. Breakfast - Spill milk on floor
13. Breakfast - Clean up milk (kids are getting impatient)
14. Breakfast - No tea or coffee. Only drinks that are out of the bottle
15. Kids - Accidentally hit daughter on her head with the hair brush (tears)
16. Phone - incorrectly enter PIN twice, so get wife to do the third and final try.
17. Leaving - Unlock door to house accidentally dropping keys in the process.

Finally I have left the house. My work day is yet to begin and I am already exhausted. I haven't even tried to write or type or even eaten properly. As with many diseases, especially movement disorders, essential tremor governs the things you buy, the activities you partake in, where you go, the choices you make and the people you see. Arresting the tremor is not simply a convenience thing, it is a fundamental shift in the quality of ones life and unshackling the burden that enslaves its sufferers everyday.

For fellow sufferers of movement disorders, I hope that this helps validate what you have always known, and for carers I hope that this will help you better understand what a sufferer has to go through and why they make the decisions that they do. Next week I am off to the clinical psychologist and neuropsychologist for assessment for DBS. I will let you know how it goes. Until then, stay well:)

My first posting!

Dear Readers,

Welcome to my first blog. I hope that those who read find it interesting, and you can find some insights and benefit in assisting people who find themselves in similar situations to what I have experienced.

I will be writing about my experiences in dealing with a variety of medical problems that I have dealt with and continue to deal with, and hopefully help others cope in similar situations, and also discuss things that have allowed me to improve my quality of life. Writing from a patients perspective will hopefully allow me to show a better understanding and empathy for others, compared to your standard health care professionals.

So, what exactly have been my experiences with medical problems? The first time I was hit with a nasty medical problem was in 1994 when I came down with a kidney stone. It hurt like hell, but I will go into that another time. Anyway, three months later, I had another stone, so after extensive testing I was diagnosed with a metabolic disorder known as cystinuria. Since then I have had over 50 kidney stones and 30 surgeries to have them removed.

The other major problem that I have had developed in 2000 and was one of the scariest times of my life when my legs started getting weak. After four agonising weeks, bucket loads of tests and consults from three different doctors I finally was diagnosed with peripheral neuropathy (CIDP) which has left me with weakness and numbness in my arms and legs for the last ten years. To add to my neurological woes I also have essential tremor and depression, and I have also had to cope with the standard colds, flus and other bugs that everyoine gets, just worse because I have had to have my immune system surpressed.

Currently I am dealing with a kidney stone which will be removed shortly, and I will talk about this next blog. In two months time I will also be having brain surgery for my tremor. Until next week, stay well and I will see you next time.