Where did my blood go? Do you eat meat?

It all started on April 9th, 2012.  Easter Sunday I flew to Boston to visit my family. Monday morning I looked at my feet and noticed they were super swollen, I had “Cankles”.

April 9, 2012

The next day my ankles were back to normal. A week or so later, my cankles returned. This time they were accompanied by headaches and loss of energy.  I started wondering what the hell was going on with me. I knew something was wrong, but what? For the next few weeks, my ankles and overall health were on a roller coaster of sorts.  By the beginning of May I really started noticing something was really wrong with me. I  am an avid bike rider, but it was becoming increasingly harder and harder to ride. I was becoming winded, out of breath and my heart would race during my rides, to the point of having to get off my bike and walk.  On May 18th after I couldn’t walk up the hill to our house,  I went to the emergency room. Thinking it was heart and or lung issues, they ran a slew of tests, EKG, X-Ray, Cat Scan, MRI, they couldn’t find anything wrong with me. I left with no answers as to what the heck was going on. At this point my ankles were constantly swollen, I could no longer bend down without getting dizzy, I had a constant headache and my heart would race upon walking.

There was no time to be sick or slow down, Kate and I were scheduled to go to New York on May 29th, we were getting married on June 1st and I was also photographing the wedding of Gary and Richard on the 2nd and then heading to Boston for the weekend to see my family.

June 1, 2012

Looking back on that trip now, I felt like crap the whole time. My head ached, I was winded, tired, overall exhausted and felt down.  I returned to Austin on the 11th of June and immediately felt like I was coming down with something.  On Wednesday it hit me, my head started pounding like I had never experienced, I crawled into my bed and did not get out of it until my Doctor’s appointment on Friday morning. During those two days, I suffered from what I thought was the worst flu of my life. I had a fever of around 104, I sweated through shirt after shirt and my head hurt so badly I literally couldn’t open my eyes. On Friday morning I went to the doctor. After talking and looking at the results of the tests from my emergency room visit, it’s decided that the next step is an Echocardiogram (which was scheduled for two weeks away). Once again without answers I head home and back to my bed. The fever goes away and  I try to resume my life. The headaches are getting increasing worse, I have given up on bending down at this point and got used to my lack of energy and concentration.

June 13, 2012

The bills start coming in for my emergency room visit back in May for a total of $7,000, but lucky for me, I was now on Seton Care Plus medical assistance program. I scheduled an appointment with the social worker to apply for charity care to get my bill reduced. While in her office, she looks at me and asks  “Are you ok? Is there something wrong with your kidneys, you look yellow?” I say, “I don’t know, they’ve only been testing my heart.” That was on June 26th, I spent most of that night looking up the symptoms of kidney disease/failure. Of course I have the top ten symptoms: swollen ankles, headaches, rapid heart beat, dizziness, shortness of breathe, lack of concentration. Great, my kidneys are failing and all the doctor’s are doing is running heart test after heart test.

June 27, 2012

I have a week before my next doctor’s appointment to get the results of my Echocardiogram, I decide to go to the Herb Bar. After chatting with the folks there for about an hour, John explains that the heart and kidneys are connected, etc, I leave there with a Kidney Tonic and a Lymphatic Tonic. I am instructed to put 30 drops of each in a glass of water three times a day. I start this regimen on Friday along with drinking a glass of water with 1/4 tsp of baking soda and apple cider vinegar three times a day. Prior to this, trying to make myself feel better, I had stopped drinking any alcohol, no sugar or dairy  and was eating mostly raw foods, smoothies and a high protein diet for the last two weeks. After two days of tonic treatments, for the first time in months my head stopped hurting and I could bend down without pain. I was like wow, that’s it, it’s my kidneys. All this time we were checking my heart, it’s my kidneys. Not happy that I could have something wrong with my kidneys, I was still relieved; Maybe at least I had an answer and finally the headaches had stopped and my energy level returned.

My homeopathic treatment, three times daily

a typical lunch (arugula, spinach sardines, radish, cucumber, fermented beans, pumpkin seeds and red onion)

I continued my daily regime and a week later, feeling better than I had in months, on Monday July 9th, I go to my scheduled Dr.’s appointment for my Echo results (which minus a heart murmur were normal). I  share with Shanna ( my nurse practitioner) my kidney treatment and after breaking down in tears, we talk about the next step(s) and schedule a renal ultrasound. Before I leave, she noticed that in all the visits, a full blood panel was not done. They had drawn blood from me at the ER, but didn’t run a full panel, so I head to the lab, they draw my blood and we leave. Kate drops me off at home and heads out. I remember sitting at my computer attempting to edit photos, I really couldn’t focus on the images. The phone rings, I decide not to answer. Another call immediately comes in, this time they leave a message. It’s  Shanna, her message said, “we got your blood test results, call me right away.”

Yikes, I call her back.

We got your results, you need to go the emergency room right away.

Huh, what?

Write this down, your hemoglobin is at 6.3, you need probably two blood transfusions.

I’m home alone, Kate will be home in a few hours can this wait?

No, you need to go now.

Trying to stay calm, I call Kate, in between sobs, I tell her the news. I lie on the couch and wait for her to come home, then off to the ER we go. After we arrive, they look me over and say, let’s draw some more blood, just to be sure there wasn’t an error in their results. Ok, hoping that was the case. An hour later, the results are in, my hemoglobin is now 5.8 (a normal level is 12).  They checked me in, I was going to spending some time in the hospital. After several hours in the ER (we needed to wait for a room to become available) I am transferred upstairs to room 328, that night I received two blood transfusions.

Giving me some blood

It was such a strange feeling to think someone’s else blood was entering my veins

Over the next four days,  I watched more TV then I can ever remember, got fed the worst food (luckily for me I have Kate and my mom) was poked, scanned, got three Iron IV treatments (my Iron was at a level 15, normal is 40) was visited and examined by specialist after specialist and what seemed like a million tests and blood draws I was released and diagnosed with Severe Iron Deficiency Anemia, but with no answers. We still don’t know why my blood and iron levels were so low and after all the tests, we don’t know where the blood went (it’s not coming out of my body). We do know that it was a slow progression, starting in April when my ankles first swelled.

flowers from Mark

hospital food 😦

delivery by kay 🙂

everything was tested and examined

Loading me up with some Iron

4 days, 2 blood transfusions, 3 iron treatments I am released!

Before you ask, “what is your diet? do you eat meat?” The answer is YES! It was my daily diet of leafy (kale, chard, spinach, salad greens, raw fruits, vegetables and high protein fish, chicken and beef that kept me going all those months. Every doctor and nurse that came in to visit me kept saying “with levels that low, we’re surprised you didn’t have a heart attack…”

My liquid lunch!

Feeding my body.

So, now what. Pumped full of blood and iron, I feel great!  We are continuing testing and working our way through my body, looking for any internal bleeding. I went to the Dr.’s last Wednesday, for more tests and blood work.

Checking for cysts

My levels are staying up and I was given to go ahead to ride my bike and have been riding daily!

July 25, 2012

Friday I go to a Gastroenterologist to see if there is any internal bleeding my stomach. In the meantime, I am on iron supplements, take deep breaths and look at my ankles daily.

Newest theory: Kate is a vampire…


About Jo Ann Santangelo

Austin based freelance multimedia documentary photographer and storyteller.
This entry was posted in austin, daily life and tagged , , , , , , , , . Bookmark the permalink.

6 Responses to Where did my blood go? Do you eat meat?

  1. Productive Week says:

    While reading this I’ve got the feeling like I’m watching House M.D. series! Get well soon and be healthy!

  2. Guy says:

    I’m so glad you know where to focus your attention. Frustrating they missed it, but your nurse practitioner and herbalist were right on top of it. I’m glad you documented this also. It’s gonna help someone else.

  3. Kristina says:

    I have no words. -I knew something was up by your posts but had NO idea the intensity of the situation. My heart goes out to you and too Kate. Keeping my prayers on you getting 100% better. Thanks for letting us know the blow by blow. Ughhh pure frustration. So glad you are back to riding.

  4. no ones more happy then me i’f i could have change places with you i would have no mother likes to see any of her babys sick and feels helpless i love you and glad your home

  5. Sister!

    I’m so sorry you’ve had to deal with all of this. I’m happy that you are feeling strong, and pray that this is simply a glitch of some sort, and that your body will be in healing mode, now. Please keep up posted.

  6. lholt says:

    Yes. Documenting is key since the medical prof. can be so lame!!!

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