Friday, April 15, 2016

shot in the dark: hemoglobin? kindeys?

I know this is very controversial to say, but haven't I earned the right to be healthy? To *feel* healthy? I feel that things have been inordinately unfair. I've been through So Much. Infections, surgeries, pain, heavy medications, more infections, more surgeries.... NU?!

I'm supposed to be DONE. I had surgery in October, and I healed great from that, and I am supposed to be able to basque in this time period of vastly reduced pain.

Things have been just really really hard. I mean I'm really struggling here. Daily headaches-- either they are looming, or they are present. If there is no headache, my head is in a constant state of feeling like it's stuffed with cotton, I'm dizzy and light- headed, I have no appetite, can't sleep well. I keep saying to Robert "I am not sick like I'm dying, but something is definitely wrong. Something is WRONG. This is not a normal way to feel."

I'm also very irritable and have a short fuse recently. Surprise.
I am not really enjoying this particular prototype of Sarah. Neither is my family, I'm sure.

I took some time today to consult with Dr. Google.
I have so many symptoms, and so many different variables, it is hard to evaluate anything in and of itself. My medical "rap sheet" is massive, and it is daunting to try to differentiate one set of symptoms from another. But I tried anyway.

What I came up with, at least for the time being, is a possible indicator that my chronic kidney disease (CKD) is rearing it's ugly head. I was diagnosed with Nephrocalcinosis in 2011 (blog post "not kidney stones, stone kidneys") after a visit to the emergency room with searing kidney pain. Could have stemmed from the renal failure when I had NF, could have been from all the heavy doses of non-steroidal pain meds all those years, nobody knows. But, there it was on the CT scan.

For a few years thereafter, I was carefully monitored by a nephrologist, doing kidney function tests every 6 months.

Then my nephrologist switched out of Soroka to another hospital, and I started seeing the one (head of the nephrology department) who took his place. The next time I had my bi-annual kidney follow-up, I showed the new doc my scans and tests, and she declared me fine. The tests and scans showed ever-so-slight, marginal "off" numbers, but I no longer needed to be on nephrology follow-up. That was that... I was cut loose from nephrology, and quite pleased with that. Upon reading this news, my family doctor was skeptical, but she let it drop. Over the past few years, when certain medications, or CT scans with dyes were discussed, she'll bring up the fact that it's not good for my kidneys, and I have always brushed that away. I am no longer a kidney patient. That's all there is to it.

So why would I bring this up now?

Well, one other symptom that follows me always is low hemoglobin (Hgb). It's not insanely low, but definitively low. It's supposed to be 12 to 14 optimally, and mine is always at 10. Never gets higher, no matter what I eat or what vitamins and minerals I take. Has gotten as low as 9, not infrequently. My GP has nothing to say about this. I went through my last surgery this way, and my surgeon brought it up, but it was a non-starter... I have low Hgb, let's proceed with life, nothing needs to be addressed about it.

Today, feeling so desperate for direction out of this unknown entity, I decided to look up possible unusual reasons for low Hgb. Or what the symptoms would be if there was a disease associated with it. Guess what? Chronic Kidney disease is on many lists. Not only that, but I have nine out of ten (ish) symptoms they list....

What are the signs and symptoms of anemia in someone with chronic kidney disease?
The signs and symptoms of anemia in someone with CKD may include
  • weakness
  • fatigue, or feeling tired
  • headaches
  • problems with concentration
  • paleness
  • dizziness
  • difficulty breathing or shortness of breath
  • chest pain
(yes, I have had chest pains on and off)

Then there was this:

Anemia and Kidney Disease
Anemia can make you feel weak, tired, and short of breath.  You may also have headaches and trouble sleeping.  You may also experience a loss of appetite and a more rapid heart rate. 
Anemia often develops in the early stages of kidney disease and gets worse as kidney disease progresses. 
HemoglobinHemoglobin (Hgb) is the protein in red blood cells that carries oxygen from the lungs to the cells of the body.
The test for Hgb is usually part of a blood test called a Complete Blood Count or CBC.  Hgb volume in the blood is measured in grams (gm) per deciliter (dL).  Ranges for healthy individuals who do not have CKD can vary by age and gender, for an adult male the range is 14-18 gm/dL, an adult woman 12-16 gm/dL.
The Food and Drug Administration has recommended that a person with chronic kidney disease who has a low Hgb, most likely has anemia caused by decreased EPO production. Hgb levels can also be affected by the amount of iron in the body. (from this website)

Headaches... trouble sleeping... dizziness.... loss of appetite.... weakness... fatigue.... (yes, sometimes short of breath, and yes, sometimes chest pains)

It's there, I don't know if that is *the* reason for why I feel all these things, but I do think it warrants a panel of kidney function tests, don't you?

I'll go to my GP as soon as I can get in to her.

Oh, and about seeing the neurologist about the headaches; it hasn't happened yet. He is only in on Wednesday's, and this Wednesday didn't happen.

OK, I have to go. I've been sitting outside in the half sun/half shade at the university campus here in Be'er Sheva, enjoying the relative quiet of spring vacation with no students around. I really wanted to go to the beach today, but settled for this instead. (the beach is an hour away, and I wasn't ready to leave early enough). If I close my eyes and imagine hard, the traffic noises can be like the ocean waves. There has been a beautiful breeze the whole time.

Thank you, dear Robert, for understanding that I needed this time away from home, even though it's Friday, and Shabbat HaGadol (the Shabbat before Passover), and the kids are all home. You are so special... I am blessed.


  1. Oh, Sarah, wishing you healing. Gentle hugs. Shabbat shalom.

  2. Wow. You are a sleuth. I hope you can get to the cause soon. Yay, Robert. Shabbat shalom.

  3. may you have a complete refua! glad you had a small breather today at the campus, and really hoping you will feel gr8 on seder nite to be with your family, singing and reading the haggadah , try to keep up your streghnth during the week, if it means cleaning less and focusing on yourself and family. shabbat shalom!

  4. As Miriam commented, good sleuthing. You have more interest in your health and more time to search for relevant information than your doctors. Glad you have a supportive family and had time to yourself in the sun.

  5. Oh my gosh!!!
    I have a patient who had super low iron due to meds she had to take. She got iron injections, and stopped getting headaches. See if your GP can give you injections?