Introduction

[LaPorte]

I joined this forum to see what information I could get from other Dialysis patients. I was diagnosed with CKD earlier this year. I went from stage 3, to stage 4, to stage 5 where I am now. My doctor gave me lots of literature to read and diet information. My GFR is at 10 and the literature tells me that 15 or below you should be on Dialysis. Well I am not. I had an AV Fistula in July 2017. After 6 weeks an ultra sound show the vein was not large enough and I needed to have adjoining veins cap off to increase the amount of blood flow through one vein.  The capping off of veins was a little over 3 weeks ago. I have not experienced any health problems, at least I don’t think so. I am 74, this is my first time at being 74 so I don’t really know what to expect health wise.  I also have Celiact Disease so my diet is really Gluten Free everything and very low amounts of Potassium for everything else . I am and have been an out of doors type of person. I have been riding dirt bikes for 40+ years and have traveled to many places around the country riding dirt bikes. One of my most favorite places is Baja Mexico. My first trip to Baja was in 1973 and I have gone to Baja at least one time each year since then. Now with this health problem all that looks like it’s coming to an end. I have been researching to see if Dialysis clinics are available in Baja. There are some in the big cities but not in areas where I can get to them in a reasonable amount of driving time.  I have read where some folks have GFR number under 15 and have not gone on Dialysis for months and in some cases years. The hardest part so far for me is the waiting. Waiting for test results, waiting for doctors appointments, not knowing if I should go anywhere, plan some dirt bike trip. The only real problem I am having is my head, trying to understand what the hell is going on.     

[cassandra]

Welcome to the site LaPorte

 



I hope you can keep riding your dirt-bike for quite a bit longer yet.

Take care, Cas

[iolaire]

Welcome to the site.  Its good to hear that you are not experiencing health problems. I think dialysis is much easier if your lucky enough to have that be your major health concern.

Regarding travel my advice is to keep making plans, those plans will help you stay positive and focus on things beyond the upcoming dialysis.  Its probably a good idea to not make nonrefundable reservations but otherwise just make plans with the understanding that you can cancel them if needed.  I felt like I'd get a transplant very soon for the three and a half years I was on dialysis, in the end I'm very glad that I did not delay trips because of that feeling, if I had I would have missed many great trips.

Sign up for an account here and start searching the nearby Baja city's to see if there are dialysis centers
http://www.globaldialysis.com/search-for-dialysis-centres.html
Also I'd just google holiday dialysis plus a city name, like "holiday dialysis cabo san lucas" and see what crops up.

[LaPorte]

Thanks for responding. Its helps to know other people are available to talk to about this situation. Its very scary when your doctor tells you your Kidney's are failing and you will need to go on Dialysis and then tells you the the age limit for a Kidney transplant is 75 and your 75 birthday is in 7 months. This is my first serous health problem in my life. I knew something was going to get me, heart attack or cancer, but never thought about Kidney's

[kickingandscreaming]

Welcome, La Porte.  I'm 76 and I never ever thought kidneys would get me.  I got to 6% kidney function before being taken down.  Got pneumonia and landed in the hospital with 12 kg of fluid in my tissues.  That marked the beginning of my dialysis journey.  I now do PD and I'm not a traveler, so don't have much to offer in that sphere.  But dialysis doesn't seem to hamper those on the forum who really like to travel.  I've already done all the traveling I need to do in this lifetime, and I find traveling a bit of PITA and when you add dialysis to it it becomes an even bigger PITA.  Before I started dialysis, I was a relatively healthy senior.  Now, I have added 3 heart conditions (A fib, heart block and mitral valve leakage) as well as diabetes from the PD sugar.  Not a great exchange.  But there's no real reason you cannot maintain your health.  Best of luck.

[LaPorte]

Thank you for your response kickingandscreming. I am not a big traveler either, but I do like to go to my place in northern California and spent a few day/week. I like to get out of the big city and enjoy the country living. No stop lights, no traffic not many people. Lots of trees and lakes. 1 hour drive down the hill to a larger town for supply's and now with the CKD, I will need Dialysis treatment. The only other travel for me would be the occasional trip to Baja. I love Baja Mexico, the people and the food. We don't go to big cities in Baja, we are in remote areas along the Sea of Cortez or along the Pacific Ocean, many miles from the larger towns where you would find Dialysis Clinics.       

[iolaire]

We don't go to big cities in Baja, we are in remote areas along the Sea of Cortez or along the Pacific Ocean, many miles from the larger towns where you would find Dialysis Clinics.     

There are a few treatment options where you do not need to go into a center for treatments, first off is PD treatment which can be done at home with a machine or via manual drains.  Also people do home dialysis with HD (like you would do in center) where they have their own machines - I don't know if you need a hygienic water supply for that - also many programs require a helper to help you connect your self to the machines, even if one was to self cannulate (put in the needles) and do most of the work themselves. 

Most people recommend home treatments because you can be have more frequent treatments that are easier on the body.  It also gives you more flexibility at home and away from home.

My doctor referred me to a pre dialysis education session at a DaVita center that goes over the treatment methods pre dialysis.  You might check to see if something is available in  your area.

[kickingandscreaming]

also many programs require a helper to help you connect your self to the machines, even if one was to self cannulate (put in the needles) and do most of the work themselves. 

I recently read (can't remember where) that NxStage has been approved for use without a care partner.

[Charlie B53]

Hi LaPorte,

Welcome to our IHD Family.

Many have managed to delay beginning dialysis, some for a surprisingly long time.  But there will come the day when you will know, it is time.   Your diet is very helpful in keeping the workload reduced for your kidneys.  Not putting so much phosporus and potassium in makes for far less that needs to be removed.  Same goes for excess fluids. Not constantly flooding yourself with fluids, your being an outdoors person so you sweat off far more than someone that stays indoors, both combine to delay the immediate need for dialysis.

I started very early.  I wasn't sick yet.  Always tired, but not sick.  I started because the swelling in my legs was so bad they would 'leak' most of the day.  My socks and shoes would fill with the clear fluid that seeped out.  I kept getting terrible infections, often spending 10 or 12 days at a time in the hospital.  But my kidney function was still about 20%.  I didn't NEED dialysis yet.  Dr agreed, if I started it would take that water out of my legs.  To me, it was a no-brainer.

Keep on doing what you are doing.  It is working for you.  When it gets to where there are problems, then it will be time.  In the meantime, learn more about dialysis, PD or Hemo.  Kidney School.org has self paced learning modules I found very enlightening.  Study well.  Try to imaging which method you could more easily learn to live and adjust your lifestyle to fit.  If it is Hemo then talk with your Dr about have an access created as it will take time to mature and become ready to use.  Doing this before hand will leave you far better prepared when that time to start gets here.

Browse the forums.  Post any and all questions.

Take Care,

Charlie B53

[Michael Murphy]

This is advise I have given multiple times on this site, stop worrying about your labs.  That's your nephrologist job.  Your wasting dialysis free time by waiting for lab results.  The lab work is a very good indicator of eventual dialysis, but not so much as to when you will need to start.  If you are symptom free there is no need to start dialysis yet.  Many people start showing symptoms and lab levels far worse than some who are symptom free.  So listen to your body it will tell you when to start.  For 2 years my nephrologist told me every month it was time to start, I felt good so I enjoyed 2 years of non dialysis life.  One day I had my first symptom and I started.  Now as to travel,  I will point out a member of this set Bill Peckham,  there is a picture on this site of him sitting on a raft in the Grand Canyon using a portable dialysis machine.  If you want the rural areas bad enough a way can be found.  I am sure the Baja is not more remote then the bottom of the Grand Canyon. So good Luck.

[OldKritter]

Welcome to the group

I started PD at the age of 72, I was still working a 40 hour week. 

If you like to travel to places where you would have electricity and/or a generator – PD with a cycler machine would be a great option. Your days are free to do what you want.  The cycler has a small carrying case, the solutions can shipped ahead of time.

Like the other have said -  research your options -

[smartcookie]

   Hi!!  I am glad you found us!  First of all, I think that 75 being the cut off for transplant is garbage...  MUSC in SC has transplanted up to 82 years of age and will transplant even older patients if they are healthy enough and show that they can take care of a donor kidney.  Secondly, start dialysis when you are ready.  Your body will let you know when the time is right.  I wish you many more years of good health! 

[LoneHighway]

Welcome to our little home on the web! You can't go only by the eGFR as far as when to start. Some people do "ok" down to 5 or 6. I'm currently at 11 and my numbers are all very good; I wouldn't be starting D if I wasn't having to have a double nephrectomy due to a renal mass to go along with my Polycystic Kidneys. You seem like a highly active person regardless of your age, so I hope you do well and continue the things in your life that you enjoy, along with your new "dialysis adventure."