Anemia-What Is It?

This past Friday I had my clinic appointment with my nephrologist. Over the last couple of years, my anemia has gotten quite severe. Friday we spoke about it in depth, and went over a few options to see what we can do to fix this, and hopefully make me feel better. When I mention that I am severely anemic, some people look at me like I have 2 heads. Anemia is something that effects me more than anything else when it comes to kidney disease and dialysis. Naturally, anemia effects everyone differently. The symptoms I have, may not be what other people suffer from.

I suffer from-
-Fatigue or loss of energy
-Racing heart beat with excessive movement (walking, stairs, running etc)
-Headaches
-Pale Skin
-Lack of appetite

Lets start with the definition of Anemia.
-A condition marked by the deficiency of red blood cells or of hemoglobin in the blood.

There are different types of anemia, I however have the kind where my red blood cells are just kind of magically disappearing. We've tested me for internal bleeding, we've tested my adrenal glands, thyroid glands and we've checked my stomach for any kind of ulcer or blood in my stomach. So far, we cannot find the reason for my anemia.

At my appointment on Friday we spoke about options. What other tests we can do and if any, what procedures I can have done. I take the highest dose of Mircera. Mircera is a medication used in patients who have anemia and who are on dialysis or have chronic kidney disease. In normal people (with working kidneys) your kidneys help produce red blood cells. Since I don't have kidneys, I have to have the aid of medication to help me produce red blood cells. However, it does not seem like the medication is working. We spoke about doing stool samples to double check my stomach, so we will be exhausting that idea, again. We also spoke about doing ANOTHER bone marrow biopsy (Not thrilled! They hurt pretty bad) my last bone marrow biopsy came back fine, and my doctor walked into my room and said "I have to admit, you've perplexed me. I don't know what is going on" so that was a bummer too.

I am currently seeing a Rheumatologist because on top of my red blood cells being extremely low, my labs are showing increased values of inflammation. Now, this is where things get tricky. I do have arthritis, however we are not sure if that is the cause for my inflammation levels to be so high. My nephrologist believes that my transplanted kidney from my mom (given to me in 2008) has become inflamed. If it is inflamed, it is indeed "stealing", "eating", or "destroying" my red blood cells, in which, making me feel like complete crap. I have a bunch of tests coming up for the Rheumatologist that I need to get done, and if they come back okay, we will have to move towards having my transplanted kidney removed.

Here is a problem with having my kidney removed. My transplant surgeon has wanted me to keep this kidney in, in the hopes that when or if I do get a new kidney, my old kidney will grab hold of my disease and it will keep it contained so it doesn't infect my new kidney. It is definitely going to cause an argument between my nephrologist and my transplant surgeon. I can't live like this though. My nephrologist made it a point to tell my that my quality of life is deteriorating day by day because of how low my hemoglobin is. I am constantly tired. I can sleep all day and all night and still not feel rested. I hardly eat anything. I have absolutely no appetite, and sometimes just the thought of food makes me nauseous. I have a headache everyday, and I'm limited to what I can do. I'm really not allowed to do anything in the heat or if its really cold. It can have dire consequences. Considering its been over 90 degrees and Fall is trying to come through, I have to be super careful. IM 25! I should be able to walk all over the damn place and not feel a thing! Now I walk a block and I have to go home and lay down and take a nap.

Dialysis wise I'm doing well. All of my labs are wonderful, aside from my inflammation markers and my hemoglobin. Its been almost 2 years of this anemic crap, and honestly, I'm getting pretty sick and tired of it. I think anemia has been my biggest challenge since I've been on dialysis. It has always been an issue, but lately its become a way of life for me. This overly exhausted, no appetite, constant headache feeling feels like my new normal. It shouldn't be my new normal.

If it does come down to taking my old transplanted kidney out, well.. I'll do what I have to do. If it makes me feel better, it's worth it. They'll most likely have to cut open my 5 inch scar from the original transplant to remove the kidney, which will indeed hurt like a you-know-what. Not only is it a rather large scar, it is loaded with scar tissue which will cause it to take a bit longer to heal.

Dealing with life everyday when you feel like you could fall over from exhaustion from just walking up the stairs in your home is not a way to live. No one should have to feel this crappy. When I tell people I'm tired or exhausted, they look at me like "Who isn't?" And I have to explain that this isn't just "I need to sleep" tired. This is bone tired. My eyes are tired, my hands are tired, my bones are tired, I can't talk I'm so tired. I am physically exhausted. Which at times, turns into mentally exhausted and I just kind of wish I had a switch to turn it all off. Give me 5 minutes to just turn it all off, and it'll be totally worth it.

I hope I explained all of this so it is understandable. Remember though, I am not speaking for everyone. These are MY experiences. Not everyone has the same experiences with any type of illness. Just remember, if someone says they're tired, they could indeed mean they are so tired, they can't stand for another minute. They're so tired, they may not be able to even eat. It's not laziness, it's illness. It's chronic illness. And its not pretty.