Lasix (Lay-Sex) Express

Picture a bullet train...no the Express version of a Bullet train. It leaves it's home station and stops in 9 minutes then again in 10 minutes then 12mins,15,20,25,30,etc. Now picture a diuretic (die-a-ret-ick)(from the root word 'mefrigginkidneysarekillingme'). This train just keeps coming on it is relentless and when the Lasix express calls you don't do much but hustle.

I have to be on Lasix (this would be the 6th day (but not consecutively) because all the infusion and my chemistry make me hold water in my ankles this time my arms and calves last time. Good idea to lose water weight bad way to do it.

It's the first Chris go here straw poll! I asked double entendre nurse about .....What?.....the nickname?.....well I thought that foot-in-mouth nurse was mean, but she calls herself that! She really doesn't mean to do it, it just the way her brain works. She's pretty knowledgeable as well. Anyway I said to entendre entendre nurse (lets call her ententN) that my back lower back hurt today from the Lasix and she said that I was the first patient to actually connect the pain (feels like backache) to the diuretic! EntentN says some patients won't believe her that it's pain from the kidneys overworking. I was astounded. I'm pretty aware that I'm on the Lasix (remember the relentless train) and I connect it to the pain. So....

Straw poll #1: who else, be truthful, didn't immediately get that big pees connect to back pain through the kidneys? Johnny I have you counted in advance as "I Knew". According to EntentN the rest of you are "I didn't know" What the truth?

Just an aside: I put “what's the truth” but I don't believe that any straw poll gets at the truth ….but they are entertaining. Remember I live with a trained statistical genius.

What else was I going to talk about? Oh yeah… for those of you playing at home and those that were in fact reading/researching ahead, my chart says I have Myelodysplastic Syndrome. On Feb 20th Ginger came oh so close. 20 bonus point to her.

Okay there is gonna be some medical talk. It’s likely to be more boring than nauseous. But Ret better have Alicia Loo read ahead!

Now to put this into context. And remember that disclaimer that I don’t know nothing about birthing babies or medical stuff, at all, this is information of a general nature, so you must consult a profession medical person for your own diagnosis.

Disclaimer two: mainly for MargieB and Gerry… Gerry cause he point blank refuses to read the blog preferring to actually talk to me, Matt please please read this part to him. It will hurt my head to explain it twice. …..MargieB it will be a pleasure to review the high points in our next phone call (It will not hurt my head I just said that to motivate Ger to read the *&%$*@ blog.

I started with Essential Thrombocythemia (ET) (to many platelets produced by bone marrow) then two years ago it was changed to Myleo Fibrosis (MF) (scarring over and jammed up bone marrow, too many cells to fit the space). I guess I really had both but number two is more serious. Duh Chris you are in a hospital. They are both in the group of Myeloproliferative disorders.

Note: we were still not talking Cancer but technically they are all about cells reproducing outside of design specs, so yes it is a cancer but no but yahbutnobutyah. You’re beginning to see why I didn’t talk of this all those years ago it’s because it’s so vague a territory.

Anyway back to our story. Now I have these two diseases and Dr. Schoozenbootz offers a cure for these to diseases for three reasons 1. They have made my spleen the size of a foot-ball because it was hoovering up the overproduction of platelets and one of the features of MF is that blood stem cells use the spleen as a home base ‘cause there is no room in the bone marrow thus making it bigger still. I was running out of stomach in which to hold said spleen. 2. My bone marrow is not going to get unscarred by itself. 3. I am going to get Leukaemia down the track.

So here we are and low and behold I find I have yet a new diagnosis. Myelodysplastic Syndrome (MDS). This is starting to make sense for several reasons. One. I have a book in the rack of all the diseases! No ET book, no MF book, no Myeloproliferative Disease OR disorder book. Two. The book says “Myelodysplastic Syndromes (MDS) are a group of diseases which ALL affect to a greater or lesser extent the production of normal blood cells in the bone marrow.” Well we all knew that!

“In MDS abnormal bone marrow stem cells (called blast cells)” I knew that but now your do too!

”produce increase numbers of immature blood cells , these cells do not grow properly and often die prematurely. This results in lower numbers of mature red blood cell, white blood cells and platelets being produced. “ We are getting away from me folks….Unless it is over produced!

” the blood cells that do survive are often of poor quality, are abnormal in shape (Dysplastic)” good info!

”and unable to function properly. The release of these abnormal cells from the bone marrow into the blood stream is also defective. This means that people with MDS often have a very active bone marrow but a low number of circulating blood cells. Without enough red blood cells, white blood cells and platelets you can become fatigued (red), more susceptible to infections (white) and to bleeding and bruising (platelet) more easily.” We are getting real close here just one more little bit.

”There are different types of MDS” yeah we know that because you haven’t mentioned me yet!

”and the disease can vary in its severity and the degree to which normal blood cell production is affected. ……..some cases of MDS, approximately 30 per cent overall, have the potential to” Wait for it….. here’s the connecting bit.

“progress to Acute Myeloid Leukaemia, and MDS is therefore a pre-leukemic disease.” We have a winner!

This ties up for me what the names mean and how I got here without actually having Leukaemia. But here’s the kicker all the support for any bone marrow transplant comes from ….the Leukaemia foundation. Hence my appeal for their support. Sorry if I have confused things.

ANY LINGERING QUESTIONS! Anybody not connected to all the parts of the story. Cause it’s taken me 17 years to figure it out! Please email or comment and I’ll try (with disclaimer in mind) to anwer them for you.

Aside: I just noticed in my 20 trip to the toilet tonight that I had my lumens (Thin little rubber tube going straight to my heart) hanging down against my vest zipper. How to explain to bluey “I’m sorry your husband had a serious bleed before we stopped it because he can’t dress!” Sorry honey I’ll be more careful. Who knew you have to look after this kind of detail. Whew.

Can’t end on that note so… what?......what? oh yeah!

I’m going to make a photo comic strip about Neutripeno Man, Mild mannered nurse by day, Neutripeno Man by night saving the world, one neutripenic at time.


Oh yeah health update. Day 7 officially neutripenic (too few neutriphils, white cells)
Still not bad. Have one little mouth ulcer by my throat and problems with indigestion. I’m pretty lucky so far most others are much sicker by this time but shoe dropping may come soon. I enjoy energy still but am taking things slower. Naps must be a part of my life now. It is interfering with my projects….this blog…..comic ….digital scrap book pictures of every carer. (really to try to remember names, but have you ever tried to get a night shift nurse to pose at 6:30 am at the end of the shift! I’ve got time though.) ……researching my disease…… and my biggest project trying to find connection time to bluey, Jo&Gene et al. thanks for your support.

I’ll just get into my jammies and call you bluey.

More later
Chris