My Days Without Hemoglobin

People often ask, "How are you feeling?" and I usually have no idea how to answer. "Tired" just doesn't cut it because it simply implies that I need sleep, and how I feel goes way beyond tired. I have found the best way to describe how I am feeling is to give examples, i.e. when I bend over to pick something up, I must be very cautious when returning to the upright position lest I get dizzy and bite it on the office floor. So, without further ado, a day in the life of a hemoglobin-less Dawn-Nicole.

On days I am off, I could easily sleep the day away. I have been known to sleep until 3 pm, get a bite to eat, and go directly to bed for the night. On days I work, however, I set my alarm for at least a half hour before I normally would. You would think this would be counter-productive, but I have to account for the numerous rest breaks I take while getting ready. When the alarm rings, I sit up slowly and give myself a few minutes to make sure I am able to stand. Then it is off to conquer the shower.

I'm not going to lie, showering is hard work. While most people look forward to a long, hot shower, it is easily one of the most dreaded parts of my day. Washing my hair is the worst, by far. The combination of standing and having my arms moving above my head is usually too much, and I find myself having to sit to do it. Yep, sittin' in the shower, that's what the cool kids are doing. Luckily, my hair doesn't require daily washings, so I have that going for me. After the shower, the rest of the getting ready process is smooth sailing. I don't bother with my hair, the shower has defeated me in that department. In the summer, I would just let it air dry and as it gets cooler, it will be ponytail city. Getting dressed is relatively painless, with just a few breaks to either sit or lay down. I generally dress in layers, though, because the hemoglobin helps regulate body temperature. That combined with my constant craving for chewing ice, and I am always freezing. So, I grab a sweater or two and I'm out the door.

My two main obstacles at work are my inability to focus and my impatience. I try to get anything important completed first thing, when my brain is sharpest. I have learned to work on various projects a little at a time - spend a few minutes on one thing, them move to another, and so on. Those of you who know me know this tactic goes totally against my character. I can't even eat more than one thing on my plate at a time. If I don't do this, however, I find myself getting very easily distracted and/or frustrated. Impatience and frustration are big issues for me. Without the focus I usually have, I have a hard time articulating my thoughts, finishing tasks, or even a sentence for that matter. Factor in that I am just so tired of being tired and I am left with a very long day at work. But, I plow through with a steady supply of caffeine and ice chips, and after what feels like forever, I head home.

On days I work, that is pretty much all I can manage. Once home, I usually contemplate doing housework, but settle for scooping the kitty litter (it is a very small apartment!). Anything else is a sweet bonus. Dinner is always something I have picked up on the way home, there's no way I'm wasting precious energy on cooking. I used to watch a movie during dinner, but now it is TV shows on Hulu. I clearly don't have the patience for movies anymore. I tried to watch Sherlock Holmes the other night which resulted in me yelling at Robert Downey Jr. to get on with it already. On the plus side, I'm finally getting to see all the shows I have been hearing I HAVE to see. Bedtime is next, and it is a rare occurrence for me to be awake past 8 pm.

There you have it...how I am feeling on any give day. Basically, it is an exercise in rationing my energy and prioritizing what needs to be done now and what can wait a month or two. While I am fortunate to even be doing any of this, I still miss being able to walk half a block without feeling like my heart is going to explode, turning my head without feeling like I may pass out or simply hanging out with friends after work. So, if you have any spare red blood cells laying around, feel free to throw some my way!

My Time Warp

I would love to say that this blog post thoroughly details my amazing version of the best number in "The Rocky Horror Picture Show," but alas, it does not. Instead, it will run the risk of boring the crap out of all of you by chronicling the past four months of the ever-frustrating state of my hemoglobin levels.

When I left off, my red blood cells were on the move, in a good way finally, and by the end of May, they had reached a normal level of 12.6. I was feeling fantastic, but apparently, as soon as you are feeling human again is the perfect time to start adjusting the medication that made it all happen. It turns out that 12.6 is deemed too high for doctors and for insurance companies who, of course, won't pay for the Epogen when the hemoglobin reaches a certain number. Therefore, to keep in compliance with protocol, I was ordered to stop the Epogen completely for two weeks and then recheck the blood. Lo and behold, I continued to amaze and baffle Dr. Cool Whip and my BFF Denise when the hemoglobin actually increased to 12.8. It was then back to our old friend, Protocol, who said no Epogen for another month. Another month?!

Disclaimer: The following is a diatribe/rant on how I feel about protocol. If you are currently satisfied with the state of our health care system and/or health insurance, feel free to skip ahead to the next paragraph.

Does anyone else fail to see the logic in this?!?! It took almost 8 months of Epogen use to get my numbers to an acceptable level. Just because it was now normal does not mean my kidney is going to magically start working on its own and become a red blood cell-producing machine. Cutting back to a smaller dose or decreasing the frequency would have made much more sense. This little exercise in Hemoglobin Roulette demonstrates to a tee why I feel protocol has no place in the process of treating patients. Diseases, maybe, but each patient is different and can not be treated by following a simple and archaic chart: if A happens, then follow steps B and C. Every person responds to medication differently, manifests different symptoms, or even has very different pain thresholds. Not only is relying solely on protocol irresponsible, it also puts patients like me right back where I started...with a hemoglobin of 8.8.

While I wasn't shocked by that number, I was completely frustrated, especially when the "solution" was the start the Epogen back up at 100 mg every other week. Umm, correct me if I'm wrong, but I'm pretty sure we got absolutely no response with this dosage in the past, right? My argument was quickly shot down by protocol (grr.), but my hemoglobin had my back by dropping to 7.2 in those two weeks. And, voila, I was back to 100 mg every week, just like that.

I went back through my calendar and lab results and have determined that last time it took between 6 and 8 weeks at this dose for the red blood cells to start coming back up. I've been at it now for three weeks and currently have a hemoglobin level of 6.2. Can I hold on for another month and avoid a transfusion? Only time will tell.

My Fight to the Death

And the battle continues...As expected, as soon as my iron levels were deemed appropriate by my insurance company, approval was granted for the increase in Epogen. Armed with a whopping 100mcgs per week of red blood cell producing meds, I was convinced I would be victorious and be back to feeling normal in no time. Instead, over a course of four weeks, I watched hopelessly as my hemoglobin dropped to 6.4, then to a critical level of 5.8. [A side note to all my doctors, present and future: The only time it is acceptable to call me at 1:30 am is if the words, "We have a kidney for you, " are coming out of your mouth. And news concerning my ridiculously abnormal lab results can surely wait a few more hours until morning, mmm-k?!?!] To say I was disappointed would be a gross understatement. I was crushed, and because it was looking as though a transfusion would be unavoidable, I was also terrified. I went to see Dr. Cool Whip, who was absolutely amazed that someone with a hemoglobin level of 5.8 was not laying in a hospital bed receiving blood, let alone being able to drive, walk 2 miles a day and continue to work full time. (Some friends attribute my strength to my Irish background, some gave my giant kidney the credit, and I just decided that I must have super powers!) I explained that besides being more tired than I can even describe with words, I really had no other symptoms. As a result, we decided to skip the transfusion and make an appointment with a hematologist to figure out why my bone marrow was not responding to the Epogen. In the meantime, I was to continue with the injections and to call if I started to experience any serious symptoms.

Little did I know that it is clearly easier to ask for someone's first born than to get anything accomplished within the hematology department. Even with a freakishly low red blood cell count, it took nearly two weeks to get in. Of course, as luck would have it, my hemoglobin took this opportunity to inch upward to 6.7. 6.7 is not good by any means, but it was almost a whole point higher than it had been a mere two weeks before, and it was the first significant increase I had seen in the 7 months of Epogen use. So, I felt pretty confident going in to see the hematologist. That was until Dr. Hey Man! (clearly not his name, but that is almost how you pronounce it and thinking "Hey Man!" each time I asked him a question made me giggle...a lot!) started spewing out some nonsense about a bone marrow biopsy. I wasn't exactly clear on the specifics, but I am familiar with biopsies, and in no way does sticking a giant needle through my bone and sucking out the gooey center sound like a good time. Luckily, after reviewing my recent labs, Dr. Hey Man! decided that as long as the hemoglobin keeps increasing, there would be no need to poke around in my bones. He did repeat the labs, though, and found that it had come up again to 7.7, one point in one week, sweet! Dodged a bullet on that one.

I have one more week until they check my blood again, but if things continue at this rate, I could be back within normal range within the next month or so - fingers crossed!

My Acceptance Speech

*** Dawn-Nicole Feaster, come on down! Your name has just been added to the bottom of the mile-long kidney transplant list! Have fun waiting and good luck! ***

Oh wow, I really don't know what to say. This comes as quite a shock considering you all have teased me with your approval for well over a month now. I mean, someone else needs a transplant, so I am supposed to put MY life on hold? I see how it is! (pause for laughter) Seriously though, it has been a long, stressful and sometimes extremely frustrating five months. I have been poked, prodded, scanned, vaccinated, x-rayed...and it wasn't even my birthday! (more laughter)

I'd like to take this opportunity to thank Dr. Cool Whip for making the referral to the transplant program. Thank you also to Sandra, my transplant coordinator, who has been right with me every step of the way, as well as the entire transplant team. A special shout-out to Grumpy McNo-Fun. Even though you made each procedure with you about as much fun as watching paint dry, you too helped make this day possible. Most importantly, I want to thank my family and my family of friends. I've said it before and I know I'll say it again, I truly could not do this without you. (wipe away tears) I don't have any idea what I did to deserve such an amazing support system, but it must have been something AWESOME! I love you all. Thank you and good night! (cue Journey's "Don't Stop Believin'")

My Stubborn Red Blood Cells

When we last left these oxygen-carrying wonders, they were eagerly awaiting their oasis in the desert, an increase in Epogen. My insurance company, however, had other plans and opted to deny the increase. Their reason? My iron was too low. Ok, you're going to have to help me out here...You are going to deny me medication designed to increase my hemoglobin levels because my iron is too low, when the reason my iron is low is because my body is using my iron supplies to over-compensate for my lack of hemoglobin? Right. Just checking. What makes this scenario even more frustrating is that decisions about my health and well-being are being made by a group of suits who don't know the first thing about my history, my current situation or medicine for that matter. Seeing as though I can't afford the Epogen without insurance, I had no choice but to give the iron supplement another go. I decided to try a lower dose, over the counter pill this time and was able to tolerate it much better than the prescription version. I also started taking it with orange juice to help absorption (thanks Jen!) and withing two weeks, my iron was back into the "acceptable" range. My hemoglobin took this opportunity to take a little breather, and weighed in at an all time low (for this time around anyway) and 7.4. So, as soon as we get the results of a few more tests, my BFF Denise is going to resubmit the Epogen increase to my insurance. With any luck, I'll be starting the higher dose within the next week or two. Because really, the only symptom of renal failure I have had so far is the extreme fatigue and it would be amazing to get back to feeling somewhat normal for as long as my kidney lets me.

My Judgement Day

Finally! It has been 7 months since I found out my kidney is failing, 5 months since my first visit with Dr. Cool Whip and 4 months since I started my pre-transplant evaluation and I am FINISHED!!! There were several times during this process when I thought this day would never arrive and it took every ounce of strength and patience I had to keep chugging along, but the day has come at last. I completed the last of my tests this past Monday, an ultrasound of my legs with no sign of Grumpy McNo-Fun (!), and gave Sandra, the transplant coordinator a call on Thursday. To my surprise, she said that she would be able to present my case to the transplant team this coming week. They will meet this Thursday to decide if I am an ideal candidate for transplantation and yes, I am a nervous wreck. While no one seems to think there would be any reason for them to deny me, it is virtually impossible to predict the outcome. There are three possible scenarios...they can approve me, deny me, or deny me for now. My main concern is my creatinine clearance, which is right on the cusp. In order to list, they like you to be 20 or below. When we last checked mine, it was 24 and Dr. Cool Whip most recently estimated it at a little under 21, so it could really go either way. Obviously, I wouldn't be devastated if they decide to wait for that number to go down to list me, but it really isn't the answer I am looking for. Ideally, I would like to list now while I'm still feeling relatively good than to wait until I'm knocking on the door of Mr. Dialysis. Plus, as soon as I am listed, those who are interested in donating a kidney can begin getting their evaluations, thereby increasing my chances of skipping dialysis altogether. I realize this is the best case scenario, and the chances of this happening are slim...but a girl can dream.

But, it is out of my hands now. I've done all I can do, and it's up to the transplant team to decide. Luckily, my vacation to Florida is this week, so I will be entirely too busy planning, packing, and relaxing to worry and over analyze. I have good friends to visit, sunshine to enjoy, dolphins to swim with and rides to ride. And hopefully, I'll be bringing back a bit of good news!

My Deja Vu

It is difficult for me to remember a holiday season in my life when I have felt 100% healthy. Maybe it was the anticipation of a living room full of presents, but when I was a kid, I was sick every Christmas day without fail. Flash forward to Christmas 1995. I was deathly ill, sleeping up to 20 hours per day, throwing up anything and everything I ate and being treated for a "stomach ulcer." Three days later, I was diagnosed with end stage kidney disease and had begun preparing for a lifetime of coping with a chronic illness. Two more years go by and the dialysis wasn't working as well as it once had. Pictures from that Christmas show one very tired, pale and puffy young Dawn. Two days later came the call I had been longing for: a kidney was available with my name on it. Less than 12 hours later, I had a brand spanking new functioning kidney.

It should have come as no surprise, then, when I awoke this past Christmas morning feeling like a pile of poop. My stomach was in knots, I had absolutely no appetite and barely enough energy to haul my butt out of bed. This time I was convinced the culprit was medicine related and did not signal impending doom. The week before, I had received a call from my new BFF, Denise, who told me that while my hemoglobin came up to a whopping 8.6, my iron had dropped nearly in half. Not good. As a result, Dr. Cool Whip had prescribed an iron supplement to attempt to bring it up some. Iron is notoriously difficult to take, so when I started feeling horrible, I was quick to speak up and request to stop the medicine. After a week of being iron-free, however, I wasn't feeling any better and panic started setting in. I was worried that the kidney had bit the big one, so I had Dr. Cool Whip run some tests. The good news was it wasn't the kidney. It looks as though it is holding strong and my levels have been stable since June. The bad new was, we still weren't sure what was causing me to feel sick. We finally settled on a virus of some sort and went with the old "wait and see" course of action. It seems like we were right because for the past week, I have been feeling a little better each day.

Unfortunately, though, I am still not taking the iron, and without iron, the Epogen injections will not work as well. Not that the Epogen had been doing much to begin with. In the four months I have been taking it, the most it has done has been keeping my hemoglobin steady which would be awesome if my hemoglobin had started out at say, 12.6 rather than 8.6. So, I am finally getting a higher dose of Epogen. In fact, they are more than doubling it...from 40 mcgs to 100! I will eventually have to start back up with the iron, as well, but probably at a lower dose. For now, we're just going to see how the new dose of Epogen works out. My first shot with the new dosage will be this week, and I couldn't be more excited!!