Wednesday, November 6, 2013

Participate in #GivingTuesday on December 3, 2013

Saturday, August 17, 2013

Don't know Beans about Beans?? Learn here!

If you don't know beans about beans -- and by beans I mean KIDNEY BEANS you will find this site and absolute gem of a find.  KidneySchool has small little 20 minute educational bits that help to inform you little by little expanding your knowledge of how the kidneys work, what is entailed in kidney failure and how to cope with kidney dialysis.  Thanks to my friend Dori Schatell who co-wrote a book entitled  "HELP I NEED DIALYSIS" and also involved in the making of LifeOptions as well Home Dialysis Central.  Please consider all these sites and the book.

Blessings & Peace,

Home Hemodialysis

Here is an absolutely amazing site about Home Hemodialysis.  I personally have been doing nocturnal/extended Home hemodialysis for nearly 11 years.  I also did a short stint on Peritoneal Dialysis or PD.

If you do not know or understand these words, they are types or kidney replacement therapy and this site will surely help educate you on this.

Blessings & Peace

Polycystic Kidney Disease - link

Great site for information on Polycystic Kidney Disease.  Something I was born with and caused my eventual kidney failure.

Blessings & Peace,

Wednesday, August 14, 2013

Appointment stigma

The middle of the month and I'm already rescheduling appointments.  I have a least 2 or 3 every month.  Most of them are an hour away.  Every two months I see a pain management doctor. He is 2 hours each way.  I dislike traveling.  I dislike pouring money into a vehicle to go to a doctor.  It makes me feel like I pay 2 or 3 times to see a doctor, once for the fuel to get there and then for the few minutes the doctor is in the room with me.  Many times the doctor never even looks up from his computer to see my face.  

I rescheduled a referral to a neurologist today.  Worsening neuropathy.  I will need to add him to my list.  General practitioner, pain management doctor, cardiologist, nephrologist, surgeon and now neurologist.  It is a small list when compared to others'.  I get tired of making appts and then being unable to go due to finances.  I guess that's a lie.  I get tired of going to new docs and having to go through my entire history and coming against roadblocks by uneducated and ill-informed healthcare staff.  I hate waiting forever for the appt, with rarely an apology, but if I am late I am sent away.  I disklike the entire process.  Filling out the forms there is always one line that says "prior hospitalizations and surgeries and gives me about 4 inches.  Really? In the last 11 years alone I've had about 15 surgeries.  How do I write that down? The list of allergies (I have many) and the list of medications that always seem to overwhelm the nurses.  Again, I dislike the entire process. 

I get so tired of appointments that often I will reschedule several times.  I should be called the rescheduler lol.  There are times that I just cannot emotionally cope with going to see a doctor.  It is stressful for me because I am so opinionated and educated about my own health that I have become ill at having to face yet another doctor (and nurses) who

A) know nothing about dialysis in general or 
B) had a cousin's sisters friend's dad's step-grandmother who was on it so they think they know all about it.  
C) know nothing about home dialysis 
D) know even less about home hemodialysis.  
E) know nothing about fistulas, grafts or chest catheters and 
F) make quick judgements about how I came to be in renal failure
G) treat me as less than equal because I am the patient

For the most part the doctor spends about 5 minutes with me.  Tell me would you how I can walk into a doctor's office who has no history of me except what he can gain from the papers I quickly fill out in the waiting room, a 35 year history of chronic kidney disease, an 11 year history averaging 15 surgeries and close to 30 or more outpatient can a doctor possibly review all of that and treat my issues appropriately and properly with the little knowledge he has of me in less than 5 minutes?  Yet, they do.  Every day, not just with me but with countless other patients.  Mind boggling isn't it?  Then we wonder how mistakes can be made.  Patients overlooked, wrongly medicated and those who slip through the cracks entirely are the results.

So, today I rescheduled an appt.  I told her I wouldn't be able to make it.  She asked me why? She asked me why, and before I could stop it the laugh escaped my mouth.  Not a big heart laugh, just a one short laugh that sounded more like a HMPFF.  She was a bit frightened I think at first but waited for my response.  Dare I tell the real reason? I take a deep breath and say "I just can't make it.  We live an hour away and I need to bundle up all my appts on the same day to conserve fuel costs."  She was satisfied but sure to tell me she was making note of it in their records. HMPFF

When I was living in a different area I couldn't make an appt with a specialist.  I was in the hospital.  They sent me a bill for $50 and refused to accept me as a patient in the future.  

Great going healthcare industry.  People talked about rationed healthcare with Obamacare.  Wake up people! We already have rationed healthcare. Dialysis patients are limited to 13 in-center treatments.  They are not allowed to have any more than that.  Do you know how they came up with that number?  They gave patients 1 dialysis per week.  The patients died.  They then gave patients 2 dialysis treatments per week.  Again, they all died.  They moved on to 3 treatments per week.  They all survived.  Thus the 3X/week dialysis regimen was born.  Nice eh?  

As a home hemodialysis patient I am allowed to dialyze 5-6 nights per week.  They don't give me a restriction on time so I lengthen my own out to a 7-8 hour treatment.  Do I hate being on that long, sure.  Do I love how much better I feel by doing these frequent and long treatments absolutely. 

So now, its off to reschedule that referral to the neurologist.  I expect attitude.  I will have to hold my tongue.  To them I am not an equal.  

For the past two weeks I've been to a dentist and an eye doctor and had a mammogram.  I will see my nephrologist and dialysis clinic team (dietitian, social worker, nurses).  I will accompany my husband for a cardiac consult, see the dentist again, schedule a colonoscopy and then back to my general practitioner.  My GP, Nephrologist and Pain Mgmt Doctor cannot agree on some of my meds.  I am a proverbial ping pong ball between all three, sigh.  

In October I see my Pain Mgmt Doctor and Nephrologist and travel to my Transplant center to meet with the Transplant Nephrologist, Transplant Surgeon, social worker, financial coordinator, dietitian, transplant coordinator, get CT of head, CT of abdomen, bloodwork (entailing 30-40 tubes of blood), echocardiogram and heart stress test, chest xray and panorex of teeth to return to active status on the list.  

Tiring.  So tiring.  It could be worse.  It could be much worse.  So I take it with a grain of salt.  The next time someone asks why I want to reschedule I just may tell them the truth.  I am emotionally unavailable.  Do you think they will believe me? 

So, I call the neurologist to reschedule. 
"Do you have a referral?"
"Yes, they faxed it over"
"Oh, I see it.  Its 2 weeks old.  We may not be able to accept this." 
"Sigh.  I'll call them again and have them refax it"

So, if you often reschedule or cancel or have to bundle all your appts into 1 or 2 days per understand me.  Happy Hump Day.


What do you all think about the face of marijuana?


ScienceDaily: Your source for the latest research news.  Check out the damage these common antibiotics can cause your kidneys.  Blessings

Monday, August 12, 2013

Perfect Moments for Tomorrow

A somewhat cloudy dreamy day today.  The heat is not bad for a mid-August morning. Awoken by my 3yo granddaughter who wriggled her way under the covers and into my heart.  She kisses me gently on the cheek.  I am blissful in that one moment, tucking it neatly on my "perfect moments" shelf.  I can retrieve it any time I care to, replace it  when it has fulfilled its duty so I can gently care for it when needed again.  

These perfect moments for me supply my life with the necessary energy and comfort when the "overwhelmings" creep into my daily life.  I know I will have many calls today, bills to pay and the necessities to complete that will fill my day with the usual stress of my life.  

Five to six days per week I have a push-me/pull-you experience with Damon.  Damon and I have an unusual and yet defining experience. I count on Damon to give me life. He gets nothing in return.  Damon is an emotional vampire. He wears me down in many ways.  Damon is also a mechanical vampire.  You see, "Damon" (so named after a vampire in the TV series "Vampire Diaries") is my home hemo dialysis machine.  Me, being a 55 yo mother and grandmother began watching the series with my daughter and in my imagination of being in the fairy tales looked at the character of Damon with dreamy, glassy eyes and I knew his name would be perfect for my dialysis machine.  

I arise in the morning making calls, following up on appointments, inventory, clean out a cupboard or organize storage, stop to give a hug or a scolding to one of the grandkids.  I check my emails, my accounts like LinkedIn, Twitter, Facebook.  I check out "Kidney Steps" blog. It often has information and details I enjoy learning.  I scan through the posts on all the FB support groups for dialysis and other random interests.  I check on my sons, daughter-in-law for pics of our youngest granddaughter and try to remember every little bit of her sweet face. Lastly I check on my "KIDNEY" page.  It is my "page of hope". I created this FB page about 18 months ago to help facilitate finding a living kidney donor for myself.  I promote the page wherever I go and ask others to share.

Please check it out.  Click on like and share it if you can. Don't forget to click on "about" and then "see more".  You may learn a little and help me and others at the same time.

After this bit of hope, I play a game of candy crush or Bubblewitch saga. I may walk out to the back deck or sit on the front porch and pet my furbabies.  I chat with my daughter and my husband is always there to make me laugh for the day.  He hugs me.  I am small now and he snuggles me as best he can.  When all is done and around mid-afternoon it is time for Damon.

My sweet husband helps me connect to the machine through a catheter (tubes) coming out of my chest.  They end inside my heart.  We must carefully practice clean protocol to avoid any germs and thus infection.  We routinely connect talking through our facemasks and wearing our exam gloves.  He changes the dressing at the exit site.  This catheter is fairly new and I still have stitches that are tender. I adjust the settings for fluid to be removed, rate of blood flow etc.  I watch as the blood flows out of my body slowly changing the color in the tubing from clear to deep red. On it goes like a finger drawing a curvy line. Around, up through and down.  Finally it returns to my body.  I don't feel anything.  I don't feel sick when the blood is drawn out.  It is an odd, empty, plain experience. It has also become part of my living.  Eleven years with Damon. Five to six nights per week for eleven years with Damon.  Like a full-time job. 

I sit reclined in my chair for 7-8 hours.  I knit.  I read.  I watch TV.  I play games.  I help with homework.  I rock my granddaughter and occasionally she will climb into my lap grasping "our" blanket and fall asleep.  Here, right here is yet another perfect moment. I snatch it up and place it also on my shelf of perfect moments.  Tomorrow I may need one.  Damon keeps me safe, healthy as possible considering I have no kidneys.  Damon and I understand each other. 

Tomorrow I will use him again and he will do all he can to help me stay alive so those perfect moments will fill my shelf and on the dark and dreary and nearly hopeless days I can retrieve the ones that will make that dim light in the darkness brighten.

Blessings & Peace.