What's Myelodysplasia like?

Hot blooded, check it and see, I got a fever of 103.....

Fevers are one of the things that I suffer with because of myelodysplasia and I can't help but hum that song every time I get one. Right now, it is actually exactly 103. Now many of you would call your doctor at this point or take Tylenol but I don't. I believe the fever is my body's natural thermostat working on something. Disease and infection cannot live in high temperatures, which is why you get a fever when you're sick in the first place. I would NEVER recommend not to treat a child's fever when it's at 103 but if you're an adult, the better way is really to ride it out because it is your body's way of healing. Doctors will tell you to take Tylenol but if you probe a little, the ONLY reason they give for telling you to do this is that you'll be more comfortable. If you probe further, and hopefully you have a doctor who will tell you this right away, but if you probe further I am certain your doctor will agree that a fever is a natural healing process for the body. Now if it gets to be over 104 or more, it should probably be treated.

Anywhoo, I thought I would share some of the problems I have because of this stupid illness. Forgive me in advance for all of my bitching and moaning, I just think some of you might be curious about how myelodysplasia actually affects my day.

I've already told you about fevers which come and go throughout the day, I believe based on the amount of activity I do. The more active I am, the hotter I get, at least that's my observation. I think the reason for this is because my bone marrow does not produce enough good red blood cells so essentially I have a lot less blood than you do. This causes a chain reaction of problems. I do not get enough oxygen because red blood cells are what carry oxygen through the body, without enough red blood cells, there's less oxygen in the body. My heart has to pump harder and faster because I have less blood to pump. What this equates to is my body working very hard to perform normal tasks such as standing, walking, cleaning, etc. When I do too much of this at once, I believe my body lets me know by either getting hot or I feel like I'm going to faint. Now, I'm sure a medical doctor would tell me this fever theory is crap but after a year and a half of dealing with this and getting fevers when I am active, I am pretty sure that's what my body is doing. The doctors have classified my fever as an FUO (fever of unknown origin) and it drives them crazy. They want to do all this testing for infection and put me on antibiotics, etc. When they can tell me exactly what's infected (I let them do the tests and they're normal), I'll take the antibiotics. I took a course of them over a year ago when the fevers first started and my fever got worse and I felt like junk for weeks.

Okay so I've told you about the fevers and the fact that I feel like I'm climbing a mountain when I walk down the street. Another thing that I'm affected by is a low platelet count. This means I bleed and bruise VERY easily. The problem with this is that I've always wanted to try sky diving and now the doctors really advise against it. They also advise against driving on the freeway, any kind of physical sports, and even shaving my legs. I just have no platelets to keep me from bleeding so a small cut or impact could cause a very big problem. I have a true to life rain forest growing off my legs, now I admit I am a bit of a nature freak, I did grow up in tree hugger-ville but come on, I am also aware that at least for me (don't get offended anyone) shaved legs are prettier. Now I could use that Nair hair removal system and I have but I don't very often because the idea of the horrible chemicals in that stuff keeps me awake at night. My dear friend Lisa tried to take me to get waxed but I feel I've suffered enough and I am just not willing to torture myself in that way. Poor Dickie with my tree trunks growing off my legs.

Another issue is that I often feel like I'm going to faint. This is improved greatly just after a blood transfusion and then continues to get worse each week after it. Sometimes I think I'm strong enough to go grocery shopping and then I find myself with my little basket of organic vegetables needing to sit down - right now. I have taken a seat on the floor of the grocery store, standing in line at the bank, and waiting for elevators. People's reactions vary, some ask if I'm all right, others give me a crazy look and walk around me. After a minute or so, the blood gets back into my head again and I can get up. This is a very good indication that I'm in need of a fill up. I always feel a little faint and this limits my physical activity level enormously which is very frustrating but when I'm having to sit right down in public, I know for sure it's time for blood.

Blood transfusions are a part of my normal routine. I was getting them about every 6 weeks and now it's more like every 3 weeks. If my designated donors are reading this - let me say THANK YOU so much! I normally go on a Saturday and get two units. It takes a good part of the day, I just sit and read or otherwise occupy myself while blood is given to me through an IV. Many people have asked me if they take my blood out and then put new in and I completely understand the question because the word transfusion sort of indicates that but no, I just get more added. I call it a fill up, my mom calls me her little vampire. I am close to needing a fill up now.

Hopefully the transfusion will help this swishing sound in my ear dissipate. When I'm low on oil (blood) I get this overwhelming sound in my ear. It's my heartbeat which beats on average 116 times a minute (normal is around 80 beats per minute). Sometimes this sound in my ear is so deafening that I can't hear anything else. I have to press on the big vein in my neck to get it to stop for a second so I can concentrate on what is being said. My doctor advises against doing that but what the heck - otherwise it's like this underwater disorienting sound that takes over my whole brain. Sometimes it is worse than others. It's almost always there just sometimes with less severity. Sometimes it's good because it takes my mind off all the weird little pains I experience.

I currently have two lumps in my abdomen, one on my right ovary and one on my left side. The right appeared before the left. They don't cause much pain, if any, but I'm totally freaked out about them. The first one has been there about a year and looks like a normal ovarian cyst at this point but they're not sure. At first when they discovered it, they wanted to operate and we went through a roller-coaster of stuff because I am an EXTREMELY poor candidate for surgery, we decided to watch and wait - so far no problems. The other one appeared about 4 months ago and again they don't know what it is. After doing the scans and before getting the results, I met with my oncologist as well as the surgeon who both told me there was no way I would survive surgery with my current blood counts and that if this is a tumor, I need to wrap up my affairs and prepare to die. Of course neither of them used those exact words but that was the message I left with. So on the Friday after these meetings, I was told that it was a cancerous tumor. Oh, what a weekend we had after getting that news. Then on Monday another doctor called me to congratulate me on the results of my scan!? Turns out they were mistaken on Friday and it's not cancer...but it needs to be watched, they don't know what it is. So now every time I get a little ache or pain in my gut, I get totally freaked out. I'm much more aware of little aches and pains than I ever was before.

And then there is the very real debilitating pain I get sometimes in my hips especially but also throughout my legs and all the joints in them. I think this is a side effect of the one medication I'm on to keep my cells boosted and injury from the three Bone marrow biopsies I've had in my hips. That's a pretty invasive procedure, they stick a huge needle all the way through the back of your hip bone into your bone marrow so they can look at your marrow. Dick watched it once, he gets a little queasy. As they were about to stick the needle in and I'm on the table flat on my stomach with no idea what's going on behind me Dick asks me "honey, have you seen the needle they use to do this?" I think I could have lived without this inquiry but hey, husbands are funny like that.

In addition to the bone pain I sometimes get nerve pain throughout my legs that is like bolts of electricity shooting down my leg. This doesn't happen that often and luckily I have an amazing chiropractor who is able to get me right again with one adjustment.

I almost always have a headache, sometime worse than others. This could be a side effect of the medication or caused by low platelets. It only gets bad enough to really bother me sometimes.

I am an irritable hag a lot. Fortunately - well unfortunately for him, Dickie sees this the most and I am able to control my hag like outbursts for the most part. Sometimes, maybe when you least expect I could possibly freak out on you too. I think Nichole and Kimmie have both experienced this and hey, if I'm forgetting you please post a comment and let me know. I am very sorry but irritability is listed as a symptom on the list of myelodysplasia symptoms so it's really not ALL my fault.

There are other things that affect me but I have complained about it all for far too long. There have been some really positive things too. I have a much healthier lifestyle than I used to, I have met wonderful people that I never would have otherwise, I am much more humble and compassionate than I ever was, I know how valuable each moment of life is and try to live them all fully.

Comments

[Crystal Montoya]

Hi Chris,
Thank you for your interest in helping me with my thirst for B negative blood. I actually believe I have all of the donors I need, I just need to confirm one detail. I will keep you posted and again thank you!

[ChrisC]

Crystal,
In "Espresso" newspaper you mention needing donations of type B negative. Can you give a few details in the blog of where/how to donate?
ChrisC

[Debbie Endicott]

God Bless you Crystal!! Keep me posted on the fundraisers!