And That’s When the Iceberg Showed Up…

7 May

Dear Friends

Yesterday I found out that there was a possibility that either (1) I had been dehydrated last week when they drew blood or (2) my kidneys have been damaged and are not working properly.  Results of a repeat test came back today and ruled out dehydration as the cause of the high level of creatinine in my blood, along with some other indicators.  I will be scheduling an appointment tomorrow with a nephrologist to pursue the kidney damage issue further.  At this point, it is unknown whether this condition is being caused by Cinryze and for now I am still infusing every third day per my immunologist’s instructions.

This means that, around hours 58-62, I begin to experience the HAE-related symptoms of nausea-like queasiness and abdominal irritation.  Fortunately, these symptoms have not, so far, had time to become acute before the 72 hour mark and, while I am very uncomfortable and cannot sleep, I am determined to go forward with my plans to attend my step-mother’s wedding and visit my grandmother.

In researching kidney damage, I was surprised to find that, although diabetes and high blood pressure are the major causes of kidney disease, kidney damage can also be caused by some things I am either guilty of or suffer from:

  • Hypovolemia (low blood volume) due to blood loss (I suffer from Menorrhagia abnormally heavy and prolonged menstrual period)
  • Dehydration from loss of body fluid (vomiting, diarrhea, sweating, fever) (II”m going through peri-menopause with its attendant hot flashes and night sweats – enough said about that!)
  • Poor intake of fluids (I’m so guilty of forgetting to drink and eat – more about that below)

Could these three causes combined be the problem?  We know dehydration alone is not the problem, but perhaps in combination.  Then add Cinryze to the mix and…sigh.  I can’t give up Cinryze, but I can’t give up my kidneys, either.

So here’s the scary stuff:

When kidney function decreases, lethargy, weakness, shortness of breath and generalized swelling may occur.

The shortness of breath is because you develop heart rhythm disturbances and I have to admit that my last two forays into the garden left me gasping and dizzy after only 5 minutes.  I blamed it on the heat and being out of shape, but I knew to knock off because I wasn’t feeling right.  It took about 10 minutes for my heart beat to return to normal.

The generalized weakness can be due to anemia because you’re not making as much bone marrow.  If I’ve already got low blood volume (and my blood pressure was very low yesterday) and my red cell count is diminished…I’d say that would be…bloody awful.

As waste products build in the blood, loss of appetite, lethargy, and fatigue become apparent.  Well, I can’t even remember to eat and when I do, it’s a struggle to make myself do it.  And with low blood volume and anemia, lethargy and fatigue are pretty much de rigueur — and I’ve been de rigueur’d for months.

When you get to the end stage of kidney failure, you get decreased mental function — to the point of coma. Well, I’m not there yet, but dang! I’m not far from total mental confusion!

At least the nephrologist, who has seen my test results, didn’t order me into the hospital — which means my kidneys can’t be at death’s door yet.

So I’m probably going to be off-line more often than on, doing everything I can to turn this situation around.  Those who would like to offer prayers, please pray; those who would like to send healing energy, please do.  Those who would like to donate a kidney if I should ever need one – start cleaning up those innards and stand by! LOL!

In faerie love and light,


23 Responses to “And That’s When the Iceberg Showed Up…”

  1. Nicole May 8, 2009 at 3:32 AM #

    I will post here what I have written on my blog.

    “Title of blog: Healing energy for Kat

    For you I have lit, a red candle surrounded by rosemary, red sandalwood and 2 Citrine stones. The purpose I have set for these objects is to generate healing energy for you to use as you please. I hope you feel better soon!


    **I really do hope you feel better soon, I have prayed that Brigit and your Faerie Queen stay close to you and give you additional healing energy and strength.**

    • Faerie♥Kat May 11, 2009 at 12:23 PM #

      My dearest Nicole

      Thank you, sweet witch, for everything you’ve done. You are a wonderful witch and friend, and I have felt your healing touch and kindness all weekend. I am calm and focused, and while I won’t be seeing the specialist until I return from my trip, I am not afraid. I am a bit tired, but resting well.

      All my faerie, wtichy love,


  2. gt281 May 8, 2009 at 5:06 AM #

    you need to eat more dwarfs..or pizza,,
    whichever is easiest to catch…

    be well….

    • Faerie♥Kat May 11, 2009 at 12:35 PM #

      Good idea…now, where did I put that special net?

  3. Mama Kelly May 9, 2009 at 11:21 AM #

    Oh hun! I came here to wish you a Happy Birthday and a blessed year to come only to read about the potential of serious kidney damage.

    May you find healing this year!! May your birthday be wondrous and happy and full of delightful surprises

    • Faerie♥Kat May 11, 2009 at 12:37 PM #

      Thank you, Mama Kelly, I’m glad you stopped by. My birthday was just the way I like ’em — quiet and peaceful!!

  4. M May 9, 2009 at 2:39 PM #

    I am sorry to hear and wish you all the best.
    Crafty Witch

    • Faerie♥Kat May 11, 2009 at 12:38 PM #

      Thank you for stopping by, dear Crafty Witch, you are so sweet.

  5. dawtch May 10, 2009 at 9:37 PM #

    First off, I apologize for no comments recently. Unfortunately, I’ve had to rejoin the “real” world, and am back to working 6 days a week (C’mon June!). I did read the post on your health that preceded this one – actually I’ve read them all – just haven’t had the time to comment. As I’m sure you’ve noticed, my comments are rarely one – or even ten – liners…
    I’m not familiar with the illness you suffer from, nor the medicines you take, but I can sympathize with being told that essentially “the cure is worse than the disease” (in the eyes of the doctor, you the one who’s NEVER HAD THE PROBLEM!?!?) and so limits the amount of medication you take. I actually had a neurologist tell me that what I was suffering from were rebound headaches caused by the medication. Basically, he said that the headache’s intensity increasing three to four hours after taking the medication, was caused by the medication. Huh!?! You mean the pain isn’t coming back because the medication is wearing off, having been absorbed by my body, and now being filtered out by that same body..? Did I miss something..? Is medication supposed to work indefinitely..? Then why do you prescribe more than one..? And give dosing instructions that say “take one every four hours as needed for pain?” Is it just me, or does that make absolutely no LOGICAL SENSE..?
    I may be one of very few people who suffer from what is essentially an unending headache, with no apparent cause (so of course that always leads to the point where the doctor wonders if I’m making it up to get drugs…), but it never occurs to them that I might ALSO be one of very few people who isn’t going to develop a dependence on said medication, even if it is a narcotic. I’m pretty sure that 17 years into it, if I WERE going to develop an addiction, it would have happened by now.
    And no, I’m not in denial. Addiction creates very specific, physical symptoms, the main one being an inability to live (or at least feeling like you can’t live) without said item you’re addicted to. When pregnant with my boy, I took NONE. At that point I had been taking them for about 10 years. No withdrawals. No sweats. No shivering. No pleading for “just one.” Of course, the never-ending headache eased considerably while I was pregnant. That period is the closest I’ve been to being pain free in a long, long time.
    The Hell I’ve been through over this medication is touched upon a little in my “Doctoring Follow-up” post…I am at a point now where I get 30 a month. That allows me about 10 days of not-quite pain-free living, but close. I need about 3 a day now, because I have built a tolerance to them. It was bound to happen, but asking the doc for a higher dose, or more per month will only end up in another ugly scene, him again looking at me like a drug-addict, or trying to give ma a bagful of “other drugs that work for headaches” which is what his co-worker did. But she (and he) are unable to tell me how I will react to these medications. Will I be able to care for my child..? Will I be able to drive the 20 miles each way to go to work? Will I be able to function, do my job, talk to my husband..? Or will they knock me out? Will they cause my personality to become hateful (Xanax has this effect on me…)? Will I be able to walk, speak clearly, think..? If they can’t assure me of being able to do these things while taking said medicine, then I can’t take it. My family depends on me, my employer & co-workers depend on me, my friends depend on me I depend on me…it isn’t an option! I can function at 100% taking the meds I currently take, so I take what I can get, and go without for the rest of the month – yet another indication that there is no addiction.
    See..? I’m apparently not capable of leaving short comments. *grin*
    As for the kidney damage possibility, I know that must be very scary for you. But it isn’t a death sentence anymore, not like it once was…I’m not saying don’t worry about it, just don’t let worry take over your life…Again, I don’t know your illness, or your history with it (it’s on my list to go back and read your blog from day one, but it is a long list…I haven’t gotten there yet ) but I feel a need to ask, have you talked to other doctors? I get the feeling that you don’t really like your current doctor. Worse, I get the feeling you don’t TRUST him fully. For me, trust is essential in a doctor/patient relationship…
    I also feel you on the whole sweating/not eating thing. One of the other meds I take makes me sweat. ALOT. Add to that that I am probably in pre-menopause, so have the night sweats to fight, too, well I drink lots. But not water, which is what I should probably drink. And I forget to eat, too. But that’s a problem I’ve almost always had, so I have learned to “remind” myself that I need to, even if I’m not feeling “hungry.” Do you have a cell phone with text capabilities..? You can go to and create an account that will text you a reminder to do anything – whatever you type in, it sends. It also has a repeating function option, so you could set it up to send you a reminder to eat every day at the same time. Even set up several reminders for each day. If texting isn’t available to you, I believe they also offer an email reminder option, though not sure as I use the text option – I’m more likely to get a text when I NEED it than an email…
    Okay, my book for the day is done 🙂 Sorry it took so long to write it *grin* Hope all goes the way you want it to!

    • Faerie♥Kat May 11, 2009 at 1:42 PM #

      Hi Dwatch

      I hear ya about the “real” world — and the “real” world of pain meds, too. Being needful of narcotics throughout my life, also, I learned if your body utilizes the substance properly (i.e., for pain instead of pleasure), you can’t become addicted. You can become acclimatized and need higher doses, and you can become dependent upon narcotics, but this is NOT the same as addiction, as you pointed out. However, the medical profession doesn’t seem to want to acknowledge these differences. Being dependent means you have to use the medication to control symptoms not related to the medication itself; being addicted means you can’t function without the medication, and the symptoms being controlled are solely related to the medication itself. Irregardless of whether the body is using the medication for pain or pleasure, the body will build up a tolerance to the drug and either higher doses will be required or a different narcotic must be tried, with the inherent difficulties you mentioned. If I know this, the medical establishment knows this, but they still act like and treat every single patient as though they are just a “drug seeker.” The last pain specialist I ran into refuse to write me any prescription and told me to get my pain meds from “the methadone clinic,” like the local methadone clinic was a pain treatment center! Florida is really $@%$ed up with it comes to pain medication because of all the black market pain med traffic that occurs here — we hear about prescription med busts at least once a week. If I ever have to go back on pain meds, I’ll either (a) just check into a hospital and prepare myself to die or (2) move the *&@! out of Florida.

      The text messaging site sounds interesting, but after once getting signed up to a service through my cell phone by an anonymous text (and going through Hades to get the automatic charges removed and the service cancelled), I blocked text messaging. I think I can just set my phone up to play music/ringtones, like I do to remind myself when it is my time/date to do an infusion, but I’d probably just ignore them! I’m doing better already, though, with drinking more. The eating bit is harder because I have what I call “food-aphobia.” It’s not anorexia because I don’t have any body issues — but I’ve had a lot of abdominal pain throughout the years right after eating and so eating has become associated with excruciating pain. Couple that with a nearly non-existent appetite and making myself eat is a real chore. Add to that the pre-menopause shit, too, and hormonal migraines…my body is just whacked right now!! I guess I shouldn’t be surprised that my kidneys want to abandon ship lol…

      Well, hang in there, sister witch…life can’t be a bitch all the time…



  6. Saje May 11, 2009 at 1:14 AM #

    Happy birthday, eh? Did I miss it? Was is yesterday? Is this the big 5-0? Well, regardless I wish you a very happy birthday, Kat! I am sorry that it is accompanied by the hardships that are presently surrounding you, but take heart that this too will pass and present an opportunity to learn and grow. Silver lining, right? Well, how about this… I consider myself a very fortunate individual to have made your aquaintance of late and I thank you – and however many years you have walked the earth which have allowed such wisdom and thoughtfulness to become your constant companions – for everything I have gained from our cyber-friendship these pass few weeks. Regardless of what you are going through now, remember to gain strength from the fact that you have touched the lives of undoubedly many people (myself included). Draw on this knowledge and find whatever courage you need to use to get through this because, damn it, we all need you! You are cherished, dear Kat. Happy birthday!

    • Faerie♥Kat May 11, 2009 at 1:23 PM #

      Hi Saje

      My big 5-0 was the 9th, so close enough! I always loved my birth date, especially when I was a kid — I loved telling the nurses (I was in and out of hospital so much when I was little) that my birthday was “Fifty-nine fifty-nine!” You could literally see them stop and think, “Uh, what did this little brat just say to me?” You’d know when they’d figured it out, by the glare they’d give me. Oh, how I gloried in that glare! What a little pissant I was!

      I, too, treasure our new friendship — as I do all my Internet friendships. The God and Goddess have really blessed me by bringing into my life, through the magical medium of electronics, so many wonderful and interesting people that I would never otherwise have had the opportunity to interact. The beauty, I am learning, of sharing what one has learned is that it solidifies and makes cohesive what one knows in a new and different way — in a way that allows one to know and understand oneself even more. In other words, by sharing and teaching what I know and learned, I am better understanding what I learned and know, and I am better understanding my own self! Now, that is truly a blessing and a gift.

      So, thanks for the birthday wishes and know I’ll be back soon.

      Faerie hugz and luv,


  7. Jodi May 11, 2009 at 5:55 PM #

    Hi again! Got a minute at work so will try to post quickly…LOL I’ve had ongoing stomach issues for almost as long as the headaches – about 10 years. Do you take anything to help you eat..? I’ve taken (and take) some super stomache aid medication/ The first that comes to mind is Aciphex. Spectacular stuff for about 5-6 years. Then it quit working for me. Then I went to Nexium (which I still take. And as an aside, if you go to their website, you can join a “club” and they issue you a member id & card – you just print it out. Take that to the pharmacy & the manufacturer will pay up to $30 towards the prescription for something like 6 months. Even if you have insurance, it goes towards the co-pay.) Nexium by itself worked well up until about a year ago. Then something got me…I know there are certain (weird) foods I can’t eat – bananas, eggs, pineapple at risk of severe stomach pain. I stay far away from them, and keep a supply of Carafate on hand in case something slips past me (not for every day use, but rather an almost immediate fix when you screw up in error). But my stomach had me on my back – literally – for almost a week, finally my doc added Zegerid to the nexium (Nexium in am, Zegerid in pm) and so far I’ve had no further problems – at least, nothing that has laid me out…
    What I was getting at (so much for a quick post…) maybe something like that will help you with the pain from eating..? It sounds a lot like the problem I have – I would eat, 30 – 45 minutes later, I’d be curled up in a ball around my stomach wanting to yank it out because it hurt so bad…Just an idea – I’m pretty sure it couldn’t hurt to at least try 🙂
    Ok, phones are crazy…back to work 😦 hang in there!

    • Faerie♥Kat May 11, 2009 at 7:26 PM #

      Hi Dawtch

      I take Nexium every morning, too, and my insurance pays 100%. I forget the
      names of all the things I took before, but that’s what I’m on now, plus
      Zofran to keep from actually ralphing. Barfing up stomach acid would kill
      me (literally) because then my esophagus would swell up leading to my
      airway swelling shut and — snargle gwaup — I’m dead. When my C1
      Inhibitor is low and I eat, food becomes an irritant, triggering swelling
      in my gastrointestinal system — and any section can be affected, with
      multiple areas usually being involved. The awful problem with this is that
      the gastrointestinal system is autonomous — you can’t control its
      motility, its movement (and you seem to know exactly how little you want to
      move!) — it keeps working no matter what. The only thing you can control
      is what and how much you put into it — and even that is only partially
      effective at slowing motility because your stomach still produces acid even
      if you stop eating completely. Putting any food into a system that is
      swollen closed is just begging for a food “traffic jam” that eventually has
      to turn around and head “back up,” even water, which you need to keep
      hydrated and minimally alive. Is it any wonder that food and I don’t have
      a loving relationship?

      Thanks for thinking of me, hon!



  8. Jodi May 11, 2009 at 5:57 PM #

    PS – I ;ived in Florida for about a year – I HATED IT!!!
    I’m just saying…

  9. Marvin May 11, 2009 at 8:52 PM #

    I hope you’re feeling better by now, FK!

    • Faerie♥Kat May 12, 2009 at 12:35 PM #

      Hi Marvin

      Well, unfortunately not, but I’m sure a transfusion of about a gallon or so
      of Martian blood might do the trick — you can spare that much, right?

      You can hear the cackling all the way down the Coast, even over the
      thunder, can’t ya?

      Mindy isn’t happy about the rain, but I sure am, and I bet you are, too.



  10. Saje May 12, 2009 at 3:16 AM #

    Hi Kat,
    I was mulling over what is going on with our mutual friend on her blog and started perusing my books and comtemplating the rituals that I know and the items that I have at my disposal. At any rate, my thoughts drifted to you and your current situation and I just wanted to offer my services. If you would like me to conjure up some type of healing bag or create a spell to help increase your health, please let me know. What good is having these tools if you can never offer a friend the use of your hammer or jigsaw, right? I hope you are doing better!

    • Faerie♥Kat May 12, 2009 at 12:32 PM #

      Darling Saje

      Every little bit helps! I certainly will not object to any healing spell
      or charm bag you would like to create on my behalf — in fact, I welcome

      So far I haven’t experienced any “kidney damage” symptoms — or at least
      none that I know of! Unfortunately, because my Cinryze has been decreased,
      my HAE symptoms are returning and that is definitely not a boon to my
      overall health, and not a boon for my kidneys, either. What a catch-22!
      It may, in fact, be the years of HAE that caused the kidney damage and not
      the Cinryze at all, just as the years of HAE caused permanent damage to the
      muscle that keeps the top of my stomach closed and the contents from
      crawling back up my esophagus to my throat (resulting in Esophageal Reflux
      Disease (ERD) and reliance on Nexium to keep things calmed down). But I’m
      still plugging my way forward and onwards after the initial despair passed
      — nobody likes to make such a giant and significant leap forward towards
      good health and then have to slide backwards into the pain and misery one
      thought left behind forever — so enough whining, eh? And get to soaking
      up all the good energy my super wonderful witchy friends can send!!

      Luv and hugz,


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