Monday, July 23, 2012

Mysterious Hypotension

I found this very useful.  I will explain in the following post.  Please read Dr. Agar and his comments here.
  1. Dr. Agar, one of our IHD members is having a problem with hypotension that has become quite debilitating for her. She has given me permission to share with you the link to her forum post about this problem:

    I have met Desert Dancer, and she is the picture of health. She is our poster child for good dialysis. She does NHHD. She had a parathyroidectomy at around the new year. She has been on dialysis for only two years. You can read her history in her signature.

    It would not be ethical to ask you to diagnose her from half a world away, and her nephrologist is doing her best, I'm sure, to figure out what's going on. But we are all rather stumped, and I wondered if you've ever had a patient like our Desert Dancer who has had the same difficulty with hypotension. Any ideas you might have would be greatly appreciated. Thank you.

Re: Mysterious hypotension
  1. Dear Desert Dancer (via Moose Mum) … sorry, but I do not know what other name to call you by …

    You sound as if you have had a terrible time since your parathyroidectomy ~4months ago and, reading through your clinical sequence at the IHD site, it does seem pertinent that the problems surfaced following, and have persisted since this procedure.

    The gist of the problem seems to be a BP ranging 70s/40s coupled with constant dizziness.

    I am pleased you have had an echocardiogram and that this has been stated as normal … this is a very helpful thing to know … and that all the usual things have been tried. I, too, would have bet on too low a dry weight as the most likely problem … though one might have expected, if anything, a little peri-operative 'weight loss' rather than peri-operative ‘weight gain’ and thus, if anything, a little more volume to remove in the post operative days, not less. But, you have tried raising your dry weight – quite significantly – to no avail.

    Anti-hypertensive drugs (eg: atenolol) were (wisely) ceased – also to no avail. Midrodrine, an anti-hypotensive drug that causes vasoconstriction and that helps to raise blood pressure was tried (also without apparent effect) … though I am glad the echocardiogram had been done to ensure good LV function first, as it (midrodrine) is a drug that demands much respect and needs to be used carefully in well selected hypotensive dialysis patients. It is a drug which I have to say I try not to use at all.

    I am also glad you are having thyroid function tests done – these are important to know and be sure that they remain normal – though it would be unusual to find acute thyroid insufficiency after parathyroid surgery.

    The same can be said for checking adrenal function – though, again, why sudden low adrenal gland function should suddenly occur post-parathyroidectomy is a little obscure.

    I note that sodium modeling has been considered (fairly) but rejected (also fairly), for the reasons you state.

    I can also understand your (sensible) anxiety about this affecting your fistula, vision or other complications from it.

    Indeed, it sounds like Desert Dancer has a caring nephrologist who has done all the things that would be done by us all in these circumstances.

    While the temporal association of the onset of your 'troubles' with your parathyroid surgery is hard to deny, I am sure your nephrologist has considered both the possibilities of (1) a relationship and (2) co-inicentality … though I, too, would still be favouring an inter-relationship with the surgery, given your prior excellent health, BP’s and course.

    Turning back to the parathyroidectomy … as this seems to me where the answer may best lie … there are a few 'observations to make. However, it must please be remembered these following comments are made without any knowledge of the patient and thus must be interpreted only as 'thoughts' - and not as fact or informed opinion.

    That said, there have now been several reports of a 'partner syndrome' to the well known ‘hungry bone syndrome' post-parathyroidectomy.

    I will copy below the text of an abstract which was presented under the internet address of the International Society for Hypertension ... though tbis site does not give the authors names nor their institution … so I must note that (1) an unauthored/undirected abstract should be interpreted with care, however, (2) I believe the context of it is good (ie: the ISH) and (3) I must apologise to the authors for not quoting and acknowledging their names and/or their institution(s), but I could not locate these.


    Objective: Secondary hyperparathyroidism and hypercalcemia have been associated with mild hypertension , while parathyroidectomy usually causes a few mmHg drop in blood pressure (BP). We noticed an unusual (and yet unpublished) occurrence of acute severe hypotension immediately after total or subtotal parathyroidectomy, in severely hyperparathyroid and hypertensive patients on hemodialysis. The hypotension becomes longlasting, sometimes disabling. Our aim was to collect clinical data on these cases in order to understand their pathophysiology.

    Design and Methods: We reviewed dialysis recordings of 5 dialysis centers, looking for symptomatic hypotensive patients who were hypertensive before parathyroidectomy. Three patients were detected: patients were interviewed, their medical charts were analyzed, and sitting and standing blood pressure were measured. For two patients we added measurements of central blood pressure and pulse wave velocity (PWV) using SphygmoCor device.

    Results: Patient characteristics and BP measurement done by us are shown in Table 1. All three patients were on Hemodialysis from young age due to congenital or primary glomerular disorders. All had many years of severe tertiary hyperparathyroidism with resultant Ca++ above 9mg/dl despite treatment. Two patients had BP values around 170-200mmHg systolic despite multiple medications. All three showed abrupt fall in blood pressure, that persisted for months, and in one case for 10 years. Currently,two patients have severe symptomatic hypotension, and one patient has borderline hypotension,and doesn't need his blood pressure medications. On average Ca++ dropped about 3mg/dl after surgery. Patients have evidence of preserved cardiac output, decreased systemic vascular resistance, and, despite being on hemodialysis many years,low PWV, reflecting good arterial elasticity.

    Conclusion: We describe a novel clinical presentation of "hungry bone and dilated vessels" syndrome.We found no evidence of orthostatism or autonomic failure,nor a surgical disruption of the carotid sinus.We documented increased arterial elasticity and decreased resistance. A possible change in intracellular calcium, calcium sensing receptor sensitivity or PTH receptor can explain the hypotension. Thus,calcium supplementation or infusion might be of clinical benefit.

    The abstract is, however, interesting. It cites a review of 5 centres and the identification of a ‘syndrome’ … a syndrome is a word for a grouping of similar, likely related findings … where in 3 patients, severe, long-lasting hypotension post-parathyroidectomy was (1) identified and (2) characterized. These authors (unknown to me) described the findings nicely … and it may be worth your showing this particular abstract to your nephrologist.

    The authors of this report conclude that the profound vascular relaxation and blood vessel dilatation may be in response to changes in intracellular calcium or to changes (a resetting) of calcium sensor sensitivity and that calcium supplementation or calcium infusion might be of benefit … though the abstract does not describe this action as having been either taken nor whether, if it was, if it was a successful measure.

    I have not come across this response myself. However, your description is consistent with the syndrome described by the authors, and the theoretical cause and the solution provided by the authors of the abstract seem plausible.

    ‘Hungry bone syndrome’ is well known. Perhaps these authors are describing a parallel ‘hungry vessel syndrome’ with a profound intra-cellular calcium deficit in the endothelium as the cause.

    Interesting ... and I am grateful to Desert Dancer and MooseMum for raising the topic ... for, even if no certain answer can be given, it is great to have to think about it - and to then try to give a sensible response.

    Up-To-Date gives a reference (from a Japanese group: Shinoda et al: Nephron 1992. 60 (4): 482) … a similar report … and again a calcium-based cause was postulated.

    Other references dot the literature – mainly as case reports or in experimental animal work – that attest to the rare but seemingly substantiated occurrence of a profound and lasting ‘hungry vessel syndrome' (my words) … just like as we see with the much more common and well known ‘hungry bone syndrome’.

    Several questions aren’t answered in any of Desert Dancers ‘posts’ … and these all pertain to her calcium status. Did she indeed have hungry bones? What was the level of calcitriol and calcium replacement post operatively? … a process that we routinely protocol-ise and ensure is renal-physician/endocrinologist supervised and not left to the surgical service alone, aggressively ensuring that all post-parathyroidectomy patients receive Ca ++ and Vit D … noting that, sometimes, extraordinary demands and made for (and supplementation needed) to ensure calcium and active vitamin D replacement is adequate – sometimes for months.

    Finally, we (but, more importantly, Chris Chan and his Canadian team who first described it … see Nephrol Dial Transplant (2004) 19: 714–719) have noted a significant increase in the occurrence of delayed graft function and intra- and post-operative hypotension in the days immediately post transplantation in patients who have been on frequent nocturnal HD (extended hour and frequency) dialysis.

    This is a most interesting finding – and is one that seems quite consistent across the experience of the (now) many units who encourage this dialytic modality.

    The question is … why? The postulates (unproven) as to the cause take two main directions: (1) that only these patients among all dialysis patients are in true sodium balance … all others being in a state of chronic sodium overload … and (2) that ‘something’ that affects vascular tone is ‘different’ – with the postulates centering around 3 potential substances: endothelin, nitric oxide … and calcium!

    Not enough is known to take this further, but it is one little added ‘snippet’ that attests to the vital role that endothelial intra-cellular calcium plays in vascular tone and where disturbances of calcium balance can have profound effects on blood pressure regulation – and , especially in these instances, hypotension.

    One aspect I have not dealt with is a 'solution'!

    I note with interest that she is on NHHD.

    We do not know her dialysis fluid (aka - incorrectly - the dialysate) calcium. This is important.

    We commonly use high calcium 'dialysate' ... with a 'bath' Ca++ concentration of 1.5 or 1.6 mmol.L = I think equivalent to a 3.0 - 3.2 mg/dl. Indeed I would go so far to say that it is mandatory to do so and that 'normal' dialysis fluid calciums of 1.3 mmol/l (? 2.6 mg/dl) are way too low for NHHD and will produce a significantly negative Ca++ balance and a toal calcium deficit. This may not always be seen at the macro-level of the serum but may be only at a cellular calcium level.

    I apologise for my mmol/l v mg/dl problems but the US is the only country in the world that does not use international unit system based on mmol/l and I have trouble with conversions to your older system..

    I presume she is on at least a 1.5 mmol/l (3.0 mg/dl) Ca++ fluid.

    Even more, I would expect her to need even more - probably a 1.75 mmol/l (equivalent, I think, to 3.5 mg/dl) dialysis fluid Ca++ concentration. We have not uncommonly used a 1.75 mmol/l = 3.5 mg/dl concentration as our standard 'bath' for NHHD ... aiming for a pre-dialysis Ca++ level of around 2.45 mmol/l (? is that 4.9 mg/dl) and a post-dialysis Ca++ level of ~2.65 mmol/l (? 5.3 mg/dl) ... ie: mild hypercalcaemia.

    The calcium bath of NHHD must be higher than it is for standard 'conventional' dialysis! No if's, no but's ... must be.

    If she is on a normal 1.3 mmol/l (2.6 gm/dl) ... may I hope not ... or even a 1.5 mmol/l bath Ca++, then her 'hungry bones/hungry vessels' will never have had a ghosts chance of recovery and she will be in continuous negative Ca++ balance. I

    f this is what is happening ... though I suspect she already will be on a high Ca++ dialysate ... then she is likely profoundly hypocalcaemic - if not clinically, at a cellular level - and I would not then be surprised at all by her persisting hypotension!

    We need to know this information to know whether all that 'matters' in this particular case ... or whether it is just comment.

    One final feature of Desert Dancer's symptoms that suggests calcium may be the basic issue here is her observation that

    "... things that used to take me an hour or two now take all day long because I have to rest every 15-20 minutes. I can't talk or chew for more than a minute or so before my throat seizes up ..."

    Calcium plays an important role in muscle function ... and low intracellular calcium is associated with muscle fatigue and with laryngeal spasm or weakness. It also can cause cramp-like spasms in the fingers and toes with exertion - carpo-pedal spasm - and sometimes numbness and tingling sensations in the peripheries and around the lips - though none of these are essential for the diagnosis. It might be interesting to know if she has been checked for a positive Trousseau's sign ... a curling-like spasm in the fingers and at the wrist +/- numbness and tingling in the fingers if a BP cuff is inflated to greater than systolic pressure for a few minutes.

    Do I know the answer for Desert Dancer? … no, I do not.

    Can I make an educated guess that it may lie within this issue … well (a qualified) yes, I think I can ... or have.

    This should be discussed with your managing team. As observed in the referral of this question, no internet answer – patient unseen – should be taken as ‘gospel’ . Only broad concepts (even if then) can be discussed. But, I hope this answer may be of some value to Desert Dancer.
    Last edited by John Agar; April 23, 2012 at 02:43 AM.

Tuesday, June 26, 2012

Tomorrow I will begin another round of IVIG therapy.  It's uses are many.  For prospective transplant patients such as myself, Dr. Stanley Jordan of CA is to be thanked.  He developed this therapy to lower the antibody levels so those of us who are difficult matches can achieve a lower antibody level and thus have a better chance at receiving a good donor matched kidney.  It has side effects, symptoms etc.  Last time I had it I had to go to the hospital dialysis-center so I could be closely monitored.  Tomorrow however a home infusion therapy nurse will come to our home and administer it to me over an 8 hr period of time. 

Probably more information that you would like but its a good basic albeit a little over my head in some areas. 

It has been a nice day today, sunny and hot.  But we walk about and relax in our home in the comfort of modern day air conditioning.  We do not suffer from the suffocation of the heat which appears to have to end in sight for this week.  We are content.  We are cared for by the wonders of engineering and better thinking minds than ourselves.  I am thankful.  I am blessed.  I watch my husband and I smile.  I feel the little dog at my feet as she licks my ankle.  I can feel the purr of the cat named Baxter (yes after the dialysis machine) cuddled in my arms.  She is ten years old now.  She and I share a special bond.  Her birthday and my embarkment upon this dialysis journey are the same.  She stretches.  I hear my husband laugh.  I feel the coolness of the air.  Yes.  I am blessed.

For those who know me I ask alot of questions regarding my health.  I do alot of research, reading in an attempt to self-educate.

Moving on regarding hospital stay. 

I was then taken to the surgical/procedure room.  They call it angio.  I am asked to move over to a sliver of a bed.  I'm not skinny, but I'm not 400 lbs either.  Its hard steel and as uncomfortable as can be.  My back hurts.  I am still fighting the tears as I try to scratch up some type of option for my future.  No one speaks to me.  They go about their duties.  Apparently the same Doc came in and began.  Again, no conversation with me.  I ask questions, I am ignored.  I can tell they successfully place another chest cath.  It was painful as she developed a new tunnel.  Even with the pain meds I am still aware. 

Afterwards they take me straight to dialysis on the 6th floor.  I see familiar faces but am embarrassed by my tears and obvious unhappiness.  The nurses are kind and caring.  While getting settled in I am approached my a man in his late 20's early 30's.  He appeared to be of Eastern Indian descent and spoke with a thick accent.  I have never seen him or met him before.  He approaches me as I am trying to wipe away tears.  I am in pain due to the procedure.  I am emotionally overwhelmed.  I feel desperately alone surrounded by many.  He stands by the side of my bed and says "You must learn to be thankful and have gratitude in your heart."  I am now not only shocked but devastated.  He knows nothing of me, nothing of my character, my history or even of occurrences of the day.  I want to scream.  I want to curse at him.  I want to tell him to get out, away from me.  I try to calm myself as he continues with his lecture about relying on faith and God and having thankfulness.  I put my hand up and tell him please leave, just leave me be right now.  He makes one more comment and walks out.  I drift in and out of sleep.  The nurses are especially careful and tender with my new cath.  They understand it hurts. 

I am back to my room, again alone and lonely.  I will go home tomorrow.  The coordinators arrange for me to give myself 2 weeks of additional IV antibiotics through my new cath.  We've done this before so it will work out fine.  The important thing is I am going home.  Home.  Home to the knowing loving arms and hands of my love.  Home to cats and dogs that are family.  Dogs who mourne my absence.  They will surround me with wagging tails and whines and snuggles and jumps on the lap.  And home to my sweety.  He will surround me.  He will comfort me.  He will be my haven for a few short moments while I fall to the depths and come back again.  He will say nothing.  I won't need him to talk.  I only need his mercifully accepting embrace.  I will be fine.  I will move on.  I will overcome this.  I will rise up and overcome this.


Monday, June 25, 2012!/AmyNeedsALivingDonorKidney
It's amazing what four months will do to change one's perspective.  I started training to do Peritoneal Dialysis at home the first week of March and after just a few days was sent home to do it there.  All went well.  My husband I couldn't get over how simple and quick the process was comparing it to home hemodialysis, and how few supplies there were.  Two weeks later I began to notice little changes in how I felt.  Day by day the symptoms exacerbated.  By Sunday the 18th of March the twitching was near constant.  Several calls to my PD nurse and we decided to go into clinic for labs on Thursday.  The night however brought such twitching, chest pain, back pain, nausea and headache I awoke husband and asked him to transport me to the Emergency Room at our hospital 60 miles away.  They did all the routine workup and informed me my creatinine was 17! I've never had a creatinine that high, which certainly explained most of my complaints.  I was admitted and put on slow continuous low volume PD for 36 hours.  My creatinine went up to 23! They were still giving me Neurontin and thus I began having near violent continuous tremors 24/7.  I was sent to the in-hospital dialysis unit and given a short 2 hour treatment.  The results, creatinine down to 15.  Theoretical conclusions are that my peritoneum is unable to do the work either due to calcium deposits or some other reason.  My only option now is to continue with hemodialysis and await a transplant.  This was somewhat disappointing as we were so delighted by the ease of PD.  While there I went through several tests including a heart stress test (fun eh?), bone scan, MRI and a few hemo treatments.  The tremors began to dissipate and I was anxious to get back home.  A woman came into my room one day.  She didn't tell me who she was at first.  She asked if she could sit down.  I offered her the chair as I lay in my hospital bed.  We began to talk.  She was the hospital chaplain.  Now, I am a big talker.  And we chatted up big.  She asked me alot of questions and I obliged as well as I could.  I took so much joy in her visit.  She will never know.  She didn't even have to be the chaplain.  I would have been content to sit and talk with anyone who was willing to spend the time.  I was lonely.  We laughed, we cried.  Through it all I opened my soul to her.  We even prayed together.  To no one in particular and yet to everyone as a whole.  We gave thanks.  She cried a bit when she left.  She said she'd never met anyone quite like me who had been through so much and was still able to find the good.  Find the silver lining.  Find the lesson to be learned and still feel blessed and ever thankful.  I needed to hear that.  I needed reminding.  She and I were in the right place at the right time and for the right reasons.  I will always cherish that hour or 2.  It touched my soul. 

A month later I was back at outpatient surgery to have my PD cath removed.  The surgery went well but I had quite a bit of surgical drainage for a week or so and then needed antibiotics as the surgical site itself became somewhat infected. 

Our oldest soldier son was home on leave and we were enjoying his time with us.  He and I have so many things in common and we had many good conversations.  He loved being back at home with the furries and made great changes in some of the dogs and their behavior.  The day before he was to leave to return to the east coast a surprising thing occurred.  I awoke in the morning.  It was Sunday and I spent a bit of time on the computer.  I was feeling fine.  By noon I sat in my recliner feeling a bit punky and took my temp, it hovered between 99-100.  I thought I'd watch it.  Watch it indeed.  Within 3 1/2 hours it was up to 104.  Contacted support clinic.  They didn't call back.  Called my neph who called me back and ordered me some antibiotics and nausea meds, claiming "its just a bug."  By now I had full blown chills, fever, dry heaves, headache, diarrhea.  I was shivering so badly my muscles ached.  Clinic called me but by then the neph had already called. An hour later my fever hit 105.8.  I was babbling incoherently, starting sentences and unable to finish my thoughts.  At around 8pm a support clinic home hemo nurse called and I deferred her inquiries stating I'd already spoken with the nephrologist.  I was as miserable as possible given the symptoms. 

By morning I was no better at all.  After speaking with support clinic I was sent straight to hospital for admission but could barely tolerate sitting up.  Conclusion after admission and blood cultures was MRSA sepsis of the chest catheter.  Good news no MRSA sepsis of peripheral blood cultures meaning the infection was isolated only to the catheter, whoohoo!  My frustration with staff built hour by hour.  They could not get over the fact that I have chronic low blood pressure.  I am alert, coherent and not dizzy.  I am not walking with walker or cane or other assistance.  I can walk to the bathroom and around my room freely independent yet they label me with a wristband that says "FALL RISK" in bold yellow.  They take my blood pressure every four hours, but at least 4-5 times because they choose not to believe they results they are presented with.  Dr orders an echocardiogram and another bone scan to rule out any heart valve or bone involvement with the infection.  Tedious but necessary for me.  I am thankful they are being thorough.  I have alot of pain but they allow me some pain comfort and the day before I leave they finally get me my pain patch.  I had constant and nearly uncontrollable diarrhea while there.  Up nearly every 15 minutes, but I have not eaten at all the entire week but a cracker here or there and perhaps some juice.  I saved the packet of  cheerios to munch on throughout the day but later regretted the consumption of oats which seemed to stir up the tummy issues.

It was off to surgery to have a chest cath placed.  The CNP had removed the other cath within 24 hrs of admission. Rest for 24-36 hours before placing another.  While waiting in pre-op, the doc comes in to discuss procedure.  She is the same doc who placed my last one.  She is also the doc who did my declot of my graftula (half graft/half fistula) in April of last year.  While doing the declot last time she also placed a stent in the vein of my arm up through my shoulder to try and keep that vein open.  This failed to work, she did not remove the stent.  I specifically requested its removal.  My request wasn't even entertained. 

As her explanation continued (been there, done that about 50 times lol), she said "you already know we can no longer use your right side for anything?"  WHAT?? I'd never been informed of this, never and she was the doc who took care of my accesses for the past 2 years.  Why had I never been told? Never informed?  I cried.  Internally I cried bitterly.  This means I am now limited to my left side.  Once the left side is used up I will be reduced to using a graft in one leg.  When that wears out, the other leg.  When that wears out, I will no longer have any places in which to do dialysis.  It will be over.  I will die.  The end.

I am thinking all of this in just tenth's of seconds, tears rolling down my face all the while saying "why did no one inform me of this".  Her response, "you were out of it.  We told you, you just don't remember."  OF course you did (sarcastically).  Nobody told me, nor my husband.  I would have remembered something like that and so would have my husband.  My grief quickly rose to anger.  I demanded to know why I was never told.  She merely repeated her former responses and then asked if I wanted to continue with placement or not.  WHAT? Does she understand the meaning of her question?  Is she really asking me if I want to get the cath and live, or not get it and die?  Seriously?  I was so overwhelmed with emotion I felt ill.  I wanted my husband there.  I wanted to bury my face in his chest with his arms around me soothing the sting.  But he was not there.  I was alone.  They wouldn't even allow me to call him.  Alone in that small cubicle with a thin worn curtain slightly pulled to give a hint of privacy.  Nurses, techs, patients and visitors bustled this way and that looking at my curiously and wondering what fate I'd met today.  Little did they know.  Doc, so cold and calculating stood there for an answer.  "Yes, I want the cath."  She left.  No pat on the hand or a touch on the shoulder.  No "I'm sorry".  Nothing but the turn of her body and watching the backside of her leave my bedside. 

Well dear readers I will continue with this story later.  I need to get on dialysis.  It will be a busy week.  Dialysis today.  Techs come tomorrow to do water cultures and change out RO system as well as putting in a couple of new filters.  Our water here is so dirty, yucky.  When they are done, dialysis again.  On Wednesday I am to start IVIG treatments (IV Immunoglobulin) to lower my antibody levels.  A nurse will come to my home and start the IV and treatment and will give it to me over an 8 hr period of time.  She will do that this Wed, next Wed then wait 2 weeks and start again for 2 weeks, repeat a 3rd time.  Then I will wait 3 months and be retested to see if I should receive more.  Thursday I go to see nephrologist at support clinic for monthly clinic visits.  THAT is an entire story in and of itself.

Remember, in spite of it all.  Breathe Deeply, it helps.
Blessings & Peace

Thursday, February 16, 2012

February 16, 2012 - I missed blogging on Valentine's Day.  It was an ordinary day for me.  I went to drs appts.  Transportation was provided so we didn't have to worry about the drive.  On the way home as we were passing through town I saw a beautiful house cat sitting atop the roof of a home.  The cat seemed quite content and comfortable with his surroundings.  He began to settle down and curl his front paws beneath him.  He was soaking up the sun, drinking in its warmth and happiness.  I could see its eyes begin to do that half-closed thing.  I could just hear him purr -- or at least in my mind.  I envied him for just a moment.  I then realized how many people in this world are lonely and alone.  How many single moms and dads, how many children lost and abandoned and hungry for food and affection.  It was at this moment I looked at my sweet husband beside me and I realized how truly blessed and fortunate I am.  I have a loving devoted husband who is always beside me to support me.  We love to talk with each other, still engaging in interesting topics.  We can still stay up until wee hours of the morning talking about our children and grandchildren, politics, religion and our hopes and dreams for the future.  How blessed I am for this.  He still makes me laugh every day.  Now I admit sometimes I look at him with a strained face and I think to myself "who are you and what have you done with my husband?", but then I realize he is there, he is safe.

Ten years ago a doctor asked me if my husband had done anything special for me (it was Valentine's Day then).  After a quick thought I responded "every day is Valentine's Day for me".  And I truly believe this. No matter where I am or what I am doing he loves me and shows that love by his endless service to me.  I forget this sometimes.  I withhold that appreciation and devotion in return sometimes because of all my health issues.  Nonetheless I do love him and care for him and am deeply devoted to him.  I couldn't imagine one single hour without him in my life.  He helps to keep me centered and grounded and I forget about that sometimes.  Still, I am so appreciative of all he does and all he is.  We often talk about how different our lives will be when we win the lottery.....I won the lottery the day I met him....and I cashed in on it the day we married.  So my sweet, Happy Valentine's Day.  You are the love of my life...followed closely by each of our very individually unique children and grandchildren.  I am so better for having known all of you, and even more blessed for the honor of being part of your lives.  Blessings

Monday, February 13, 2012

oooooohhhhhh ahhhhhhhh.  Breathing.  Breathing.  Breathing Deeply.  Okay well I guess I am calmed down now.  Next month will be Kidney Month, and within it World Kidney Day.  For all those who have ever considered organ donation, please consider signing an organ donor card.  Please also notify all family and friends of your wishes upon your death so that there is no confusion about how you want your wishes fulfilled.  Many, many lives can be saved through lungs, liver, heart, stomach, pancreas, kidneys, eyes, intestines, skin, bones etc they can all be used to help others live fulfilling lives.  Please consider organ donation.  You can be a living donor as well, donate a part of your liver or one kidney, it can make a world of difference to others. 

Blessings & Hugs!

Saturday, February 11, 2012

Late yesterday afternoon the IV Infusion Therapy Dept Nurse from the pharmacy called to say the pre-authorization had been approved for the IVIG therapy.  However, the full cost of nursing services and supplies to give the IVIG therapy isn't covered by my insurance.  So, for the nurse to be in my home for 8-12 hours using my dialysis tubing, my already existent blood acess, my saline, syringes etc., my machine which will take my BP and pulse every half hour.....will still cost me $1200.  That's more than $100 per hour.  Wow.  I am unsure how we will proceed.  She sent me some financial papers to fill out for medical harship so we will see if we qualify to have the charges waived.  I will be receiving the IVIG once/week for 2 weeks then once a month for 3 months.  I never really saw a decrease in my PRA levels to show an improvement in being matched with someone for a transplant.  Dr. Stanley Jordan from Cedars Sinai in L.A. who developed the program says it takes time for the IVIG therapy to work.  I can only hope and move forward.  So, I'm moving on. 

Today there are over 115,000 people awaiting an organ transplant.  MOST of those are awaiting a kidney transplant.  There are over 250 million registered voters out there, and we can all live full lives with only one kidney.  PLEASE consider being an organ and/or tissue donor.  YOU could save lives.  If you don't want to donate while living (such as blood, bone marrow, kidney, portion of liver), then PLEASE consider signing a donor card to donate once you have died.  It WILL save and improve lives for those still living. 

Okay, done preaching for today. 

Well, I've been up all night long.  Too much pain from the carpal tunnel syndrome in my dominant hand.  Guess its time to get it taken care of.  I'm off to bed now.  I look forward to sweet dreams, snuggling up to my hubby and getting warm under the covers.  I have begun a bucket list of sorts.  Things I'd like to accomplish before leaving this life and moving on.  Its a crazy list.  Please feel free to share your comments.  Maybe you could give me a few more ideas?

Ride a motorcycle
Have a nice aquarium
Go Ziplining
Go mock skydiving (or the real thing if it wouldn't hurt my bones lol)
take a hot air balloon ride
Get tattoo (aaaaaaahhhhhhh for shame lol)
Go on train ride
Go on a cruise
Ride an elephant
Ride a camel
Publish book
Go to broadway play
Go to Oregon coast with all family
Get family pics with everyone in them.
Learn to play the piano
Have a nice flower/rose/secret garden for sanctuary.

Good night all.  Blessings and HUGS!!

Friday, February 10, 2012

Sitting home this afternoon trying to get more things done via computer.  I had started a letter to our soldier son who is overseas.  Wouldn't it be great if the thoughts and feelings we had for our loved ones could go straight from heart/soul/mind to paper?  I wish he could understand the true honor and pride I have for all he does and has accomplished and learned.  He is a brand new father, arrived home and within 18 hours was a dad.  He was able to spend about 2 weeks with his new sweet daughter before returning to Afghanistan.  I am sure he thinks of her all the time, and his sweet wife.  They are his core family now and he leans on his wife alot to keep him grounded and centered.  Don't most of us have at least one person in our lives we know we can count on to keep us grounded and centered?  I know I do, and I am blessed for it. 

But, back to my original thought.  I was on the computer when the phone rang.  Upon answering I discovered it was a good friend (I think he's a good friend anyway), from cyberspace.  He is a fellow dialyzor using the great NXStage system.  He became the founder of a vast support group for dialyzors and care partners as well as making a large presence in D.C. regarding patient advocacy and changing the way dialysis appears.  He is one of my heroes in a sense.  It was such a pleasant moment to know it was him on the phone and being able to listen to his fun experiences traveling the world in his journey to speak out about dialysis, NXStage and home dialysis in general.  I so enjoyed our conversation. 

This got me to reminiscing once again about the importance in remembering that each day is such a gift.  This life we lead, this life of is hard.  It is not an easy life.  It is not for the faint-hearted, but it is doable!  There are days when I want to crawl back in bed and sleep the day away, or watch TV or movies all day.  Then there are days when I actually do just that.  We are allowed such indulgences.  Still, we press forward.  We live our lives one day at a time.  We have joys and sorrows, fears and frustrations but we still press forward.  I am blessed to know Rich.  I know many many people have benefitted from his tireless efforts for the dialysis community.  I feel honored to know people like Rich, Dori, Robin, Bill, Joanne.  I am also honored to be a mother to two amazing soldier sons, and 3 daughters.  I am fortunately blessed to have grandchildren who still see me as someone who can be trusted and loved.  Isn't this what life is about?  So, I will finish my letter to my son, pay a bill or two, pet one of the kitties who is curled up beside me on the warm printer and think about what to have for dinner.  I will hug my husband and maybe call my daughter.  Towards the end of evening I will pump up my emotions to conquer another dialysis treatment, I will sleep.  I will wake up in the morning and do it all again, and I will be blessed for it. 
Received a call today from IV Infusion Home Therapy Nurse.  The transplant coordinator sent over a dosage prescription for IVIG therapy to be given as a pre-transplant therapy to reduce my PRA levels.  PRA is short for Positive Reactive Antigen (Antibodies).  High PRA levels make it very difficult to receive a transplant that will be successful.  Basically it means you will react (which is bad) to a high level of possible donors.  The IVIG therapy which is short for IntraVenous ImmunoGlobulin (sp), is given IV over a t w e l v e hour time frame.  YIKES!!! I thought 8 hours of diaysis at a time was difficult.  I cannot imagine having to sit in the chair for dialysis for 12 hours while getting IVIG at the same time and having the nurse sit and stare at me LOL.  I may need serious sedation for it.  I know my RLS could really kick in.  I must not borrow trouble though by thinking it will be difficult.  It may be weeks or months before they receive authorization to proceed.  Well.  I am off to go see my family doctor.