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

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