Catch up...

My health has been a real problem the last few months. Energy levels have ranged between extreme fatigue and just plain exhausted. The blood transfusion I had three weeks ago has done it's dash and my levels are now almost as low as they were. But I'm not the sort of person to let that affect my day to day life so I have just plodded on with my work and taken things as they come.. if not a fair bit slower than usual.

I diagnosed relapsed BOOP a couple of months back and wanted to go for the full 60mg for four weeks treatment but the doctors didn't like that idea (even though it's the gold standard for relapsed BOOP).
They wanted me to reduce down to 20mg by next week when I see the respiratory clinic (another new doctor). I never made it past 30mg.

I've been running a fever morning and night for the last week and have now developed a cough in the last couple of days. My heart rate is still very high and I get dizzy if I stand up too fast.

In my last post I mentioned that I planned to ask the respiratory doctor if I could try the antibiotic Erythromycin as a means of treating my BOOP and weening off prednisone. My haematologist has no objections and has left it up to the respiratory doctor to give the OK. I'll find out next Thursday when I see him.

Now interesting thing... back in September last year I developed a cough and was put on an antibiotic for a week for fear that it could develop into pneumonia with my weakened immune system. The cough cleared up overnight and yet the lab test results showed no infection in my sputum. My GP was at a loss to explain how an antibiotic would have resolved the problem if there were no nasties there in the first place. It sure confused me too!  I was reading back through my health notes this morning and guess what that antibiotic was? You guessed it Erythromycin!

So armed with that bit of knowledge I managed to grab five minutes with my #2GP Kyra late on Friday afternoon and she prescribed me a seven day course.  Standard dose is 1600mg a day for infection. For BOOP it's 10mg per Kg of body weight. So I'll be cutting the pills in half and taking around 600-800mg a day until next week and monitoring the results.

Because I've been running a fever for the last week it will become immediately obvious if it's working or not. If the fever doesn't go away then I can crank up the dose and treat it as an infection.
(I don't want to start on a high dose because that may affect the efficacy of the drug at the lower dose.)

On March 20th the Wellington Car Club held it's annual Hillclimb on Alexander road. It's one of my favorite events and I hold the record for the fastest car to the top of the hill. On the Saturday night before hand I was woken by my heart pounding erratically in my chest. I was having my first ever episode of atrial fibrillation (erratic heart rhythm). I put on my sports heart-rate monitor and it was unable to get a fixed reading, it swung wildly from 150-226 beats per minute and by the pounding in my chest it probably wasn't doing too bad a job at getting the readings right.

I had two options... wait and see if it settled, or call an ambulance. I decided to wait. Within half an hour I'd drifted off to sleep again and awoke at 7am still alive and ready to race.
Once we got to Mount Victoria and unpacked all the gear ready to race I introduced myself to the ambulance officer from St Johns, who generously offer their services at all our events, and he suggested that he hook me up and perform an ECG on me to be safe.

My resting heart-rate was 156 but it had a normal "sinus rhythm" so we decided to keep an eye on it through the day and if any problems arose he would take me to hospital. Interestingly my heart rate never moved once I was in the car. It was only walking around that increased it. I guess I was more relaxed behind the wheel  :)  Had it increased significantly while racing I would have retired for the day for safety's sake.
Below is video of one of my runs. It's looks very smooth from this perspective. Top speed would have been around 170kph as it was a marshalls run (where we take the helpers for a run up the hill) and I was driving slightly slower than I would during competition.




I won the event, which was good. My time was .2 second slower than my best time, but that's OK it's still a fairly consistent time and shows I'm not getting any slower. However the competition is getting faster, with some competitors postings some incredibly fast times. I said at prize giving that they were certainly snapping at my heals. It might be time to retire the Evo and get back into the middle of the feild where all the fun and true competition lays.

To that end I'm pouring my efforts into getting my old AE86 Corolla race car (above) put back together.. sort of a 50th birthday present to myself.

I'll post an update on my health in a couple of days... right now my fatigue levels are huge.. I can't even walk around the supermarket without having to rest all the time... eventually going back to the car and laying down.

I've got two big exhaust jobs on this week.. it's going to be interesting getting them done with no energy!.

...Ron

Why I hate needles.. Not a good day.

It's not that I've developed a phobia or that I reel back in terror when I see one, but after five years of blood tests, cannula insertions and PIC line disasters, let's say I've developed a rather well earned disdain for them.

There was the central line insertion into my neck a few years back that went so horribly wrong that it was only on the third attempt by another doctor that happened to passing the theatre, that the hard plastic tube was finally inserted into a vein. That episode left me unable to move my neck for several days and with massive bruising that lasted weeks. The hospital even had an internal inquiry that resulted in changes to the way the operation was performed.

Then there was PIC line they tried to insert into my bicep in Germany. The 12" long wire went straight through my vein at the elbow and along my bicep under the skin. It was supposed to be inside the vein.
They injected saline into the line to check it and my bicep grew! fail again. Remove line and give up.

When I was younger the veins on my arms used to stand out like a relief map of the Nile Delta.
These days they cower and hide, tiny thin lines barely visible under the skin. Blame that one on countless chemotherapy sessions.

Many people have failed to get a line or even a needle into my veins. Sometime a simple blood test can become an exercise in mental anguish both for me and the person trying to obtain a sample.
I can steel myself for one failure. Two at a pinch but after that I loose my metal and although I just sit and bare it, Internally I'm over it and stressed to the max.

However some really good nurses have done a brilliant job and with some direction from me as to a suitable site have gotten a needle in first time with no bruising or fuss. However during a blood test two weeks ago the nurse dug the needle straight through the vein and then proceeded to push it backwards and forwards about six times hoping for something to start flowing. It didn't and I had a huge black bruise on my arms for a week.

The excellent nurse at Wellington hospital blood test clinic told me this is called "Tissuing" and is the sign of a person that is not very good at what they do. She then took a blood test and hit a vein first pop, leaving just a tiny red speck where the needle entered. As it should be.

Lets move forward to last Thursday and my blood transfusion.
I got to the Cancer day ward at 10am and I figured I'd be there around 2-3 hours.
I knew that time frame was probably not going to accurate when it took nearly an hour before I was finally hooked up to a machine and a cannual inserted into the back of my hand.

It had taken the nurse two goes at putting the line in , but I figured that might be the case and had mentally braced myself for the procedure. I asked the nurse how long it would take to transfuse the two units of red blood cells. The answer was four hours. Bugger, it would be well after three before I got away. I reached for my mobile phone and started to dial my first customer. A little image of a battery flashed on the screen for a second and then it went black. Bugger! I had no way of informing my customers that I would not be able to make it that afternoon. Could the day get worse?

A couple of hours pass by and I need to use the toilet... I unplug the pump unit from the wall and it automatically switches over to battery power. The unit hangs on a wheeled coat-rack looking thing along with the blood bag. I wheel it trough the day ward and into a vacant toilet. As I'm about to leave the cubicle a felt a familiar but uncomfortable sensation in the back of my hand and I panic! It's the horrible feeling of that long cannula needle sliding out of the vein in the back of my wrist. I look down and blood is hosing out of both my hand and the plastic line that now hangs down by the floor.

Blood covers the floor and is pumping from my hand. I reach round for something to stem the flow, a paper towel does the trick. I stick my head out the toilet door look pathetically at the nearest nurse and say "umm" . She escorts me back to my seat and tells me not to worry.
The others patients around me have that look on their faces, like.. "hey wasn't he all hooked up to a machine when he left?". I sit down and wait to be attended to.

The nurse once again attempts to insert a new cannula needle and fails. Then she looks at the needle and says "It's a good thing it didn't go it" It's the wrong type!" Oh great, that really makes me feel better!
She the turns to my other hand and has a poke around there with the correct type of needle. Again she fails and she's been "tissuing" with the needle too.. straight through the vein. It's hurts like a bee sting deep in the under the skin. Mentally I'm a mess, but I put on a brave face.

She returns back to my right hand, digs some more and fails. Then back to the left hand and puts on a tourniquet tightly and starts looking for vein brave enough to pop up. Then one does. massively! The vein she just tissued hasn't sealed yet and the pressure of the tourniquet causes it to blow out. A marble sized blue lump appears on the back of my left hand.  She quickly removes the elastic strap and apologises.

At this point I'm almost ready to run screaming from the room, but big boys don't do that. all I can do is scream inside, grit my teeth and sweat profusely. She returns to a spot on my other wrist, up the arm from where the last line was successfully inserted and she finds a vein. The blood flows out into the plastic tube and we both sigh. She puts on extra tape to prevent a repeat of my earlier disaster. I slump down in the lazy-boy chair and try to sleep to the rhythmic whirr of the blood pump. I fail.

By 4:30pm it was all over. The line is flushed and removed and I headed off home. Six and a half hours of my life I'd rather have not had to deal with.

Last night I had two very large handles of Jim Beam Bonded Bourbon and Coke. It's been over five years since the cap came off that bottle. Now I must say that tasted great!
Yesterday would go down as probably one of the least enjoyable days of my life.
But hey that Bourbon was pure magic! 

The new blood seems to be helping with the energy levels too. I've spent most of today getting the Evo ready for Mount Vic Hillclimb next Sunday  :)

Feeling pretty darn proud of myself...

My energy levels are at an all time low. I'm back on a high dose on prednisone because of a possible (but mild) relapse of BOOP. (However never one to sit around, I'm still working flat stick and every day is booked with various tasks)

Basically my immune system is in over-drive and there is an inflammatory response in my lungs that causes the minute air passages to block up. By treating with a corticosteroid such as prednisone, my immune system is suppressed and the inflammation reduced.

The steroids have massive side effects, both short and long term. Thinning of the skin, fat build-up in the face and stomach. higher risk of glaucoma and diabetes, bone density loss and possible bone necrosis in the hips etc over a long period of use.

So as you can imagine the doctors want to get me off prednisone if possible. Trouble is that it would appear that every time I go below 20mg a day I go into BOOP relapse. So last month we tried Azathioprine, an immunosuppressive drug often used to avoid rejection in transplants. The problem was that this and other similar drugs are also myelosuppressive ie they damage bone marrow (where blood is made) , something I very little off to start with.

So after my blood counts plummeted following a week long trial of the drug it was decided I would have to stay on prednisone indefinitely as I wouldn't survive very long with no marrow!

Not one to give in lightly, That got me on a hunt for a drug/ treatment regime that was not going to wipe out my bone marrow. I found a medical paper that mentioned a study in 1995 by a group of Japanese doctors who had successfully treated six BOOP patients with a low dose of the antibiotic Erythromycin.

Apparently there is an anti-inflammatory side effect to the drug even in relatively low doses.
I printed off just one paragraph of the study, just enough to get the haematologist interested enough to look into it. He accepted it just might work and has promised to discuss it with his respiratory colleagues and phone me back.

If they accept my treatment plan, and so far I can't see what we have to loose with no other options, I will be over the moon!

Imagine that. Interrupting the senior haematologist as he tells you there are no drugs that will treat your disease without killing you, and I say while passing him my fndings "have you considered Erythromycin ?" and he pauses, reads my document and say .."that might just work".  Priceless!!.

Fingers crossed for  the go ahead and positive outcome.  I'm feeling pretty darn proud of myself right now. So much so that I'm about to celebrate with a Bourbon and Coke. Something I haven't had in a number of years. Tomorrow I'm in for a blood transfusion anyway so it's not like I can do any permanent harm!  :)

Cheers!   ...Ron

Better by the day.

This is my fourth day on 60mg of prednisone for relapsed BOOP.

My resting heart-rate is slowly coming down. It's no longer screaming along at 125 beats per minute.
Sitting here at my computer it seems to vary between 82 and 105, I'm guessing that it will continue to slowly drop it's window down to something approaching 70-90 over the coming week as my blood levels approach normal again.

I can only assume that my haemoglobin levels are are rising to normal as my heart-rate drops.
I might get a blood test done this week just to confirm.

The only other problem I have to work on now is this darn itch. It's keeping me awake at night and even invades my dreams. It torments me in both my waking and sleeping states.
I've spent countless hours researching what could be causing it and it comes down to four possible things. All are long shots..

1: Anemia: Long shot, as I don't think I've been anemic for as long as I've had the itch.

2: Type 2 Diabetes. Possible due to the prednisone and tests that show I'm in the danger zone. But no other diabetes symptoms.

3: Long term use of prednisone causing a rebound effect and skin damage. Long shot. Only vague anecdotal evidence to support the theory. Itch is unaffected by prednisone which is the standard treatment for skin itch. (Pruritus)

4: Hodgkins Lymphoma. Classic symptom of HL seen in around 30% of patients. However I have no other HL symptoms. However I do have enlarged but dormant lymph nodes in my pelvis. It doesn't feel like the typical HL itch and it seems to respond to various lotions, potions and creams at a topical level.

There is just one person that claims to have found a remedy for the intractable itching from Hodgkins Lymphoma. Imagine that.. millions of useless links in Google and just by chance I found the single paragraph where a sufferer posted about her success after making a tea from the flower of the Tri-colour Viola flower. I've ordered a quality from a place in the US and shall see if it works at a systemic level. Nothing ventured...


...Ron

The return of the BOOP.

I don't think I've ever been so happy to be so sick.

Once I'd been informed that I had macrocytic anemia and that it had been brewing for several weeks, a lot of things started to make sense. The tachycardia, the fever, the fatigue. All are symptoms of lung disease, but together and without an increase in my white cell counts, they are not typical of lymphoma. Phew!

I've just returned from a visit with my #2 GP Kyra Jones and although she is cautious about my decision to run with 60mg of prednisone until I see my haematologist on March 10th, she didn't exactly say no either. (She freely admits that there's not a lot of people that know much about BOOP, least of all her.)

There's no point in trying to treat a BOOP relapse with 40mg, I tried that last month and it didn't work. I wanted to go with 60mg then but the respiratory doctor insisted on 40mg. I think had he looked at the blood work he would not have gone down that route.

Oh well... It's sorted now. I should learn to go with my gut feelings. I knew I had relapsed in January, Knew I should have gone with 60mg.. but at least it's not lymphoma, and my marrow is probably fine.
I'll get my strength back over the next few weeks and then I can start back on the path to weening off pred all over again.

At least it hasn't ended with me in hospital like it did last time no one would listen.