We decided to go on a raw food diet, purchased a high level juicer and some wheat-grass growing systems, grew grass, juiced it, drank it throughout the day and also chewed it. Julieah got into making these awesome green drinks with our juicer and our blender. We would shop at the local farmers markets for everything green we could find, green leafy stuff, avocados, kale, collards, you name it. If we found it it put it in  the drink.  Along with the greens we put in Hawaiian red peppers (Hot Hot!) lemons,  garlic, celery to juice it up. The drink was great, but probably deadly for someone with kidney failure; way, way to much potassium. Aw well, live and learn (or not). So I got sicker.

I would in the morning after fitful sleeps, vomite and felt like *&^%$ throughout the day. By the time my GFR ( the measure of how much fluids were getting though my kidneys) level dropped to 5, I was in trouble, not just sick, but dieing. I was extremely anemic, nauseous all the time, and so physically fatigued that I had a difficult time walking up three stairs to get into the house.  Julieah, bless her soul, never gave up. Besides the nutritional program she put together, she went the further effort and built a sweat lodge out of lava rock and canvas, heated rocks on a fire, hauled them into the sweat lodge, and poured water on them, all to try and cleans toxins which were building up in me. Julieah is an Angel.  Without her by my side, with unconditional love and support, I wouldn’t be writing this. Then one day it was evident it was time to get on dialysis.

I was sitting on our couch and I felt the hand of death take a good hold of me, and I told Julieah it was time. So we contacted Dr. Nada who got us scheduled into one of the two dialysis centers here on Kauai. It took a few very challenging days before they could fit us in and it was a long, very trying wait.  Dr. Nada assured us that I would feel great after the first dialysis treatment, and I thought, I’ll be happy if I just get to the treatment before I die, and if I just feel a little more life after. The first dialysis treatment was horrible and I felt like ***&&^%% the next day. Got up, threw up and wondered if Dr. Nada wasn’t the one who felt much better, having got me at last on dialysis.

Besides having what they refer to as a “fussy Fistula”, which required about an hour or more to get needles in and not alarming, it was like being in a cold winters day, so cold that my blood pressure went sky-high and I felt the cold throughout my body to the point I almost panicked and jumped out of the chair.  The nurses often joked during the 6 months we were there in center, that they often expected it to snow.  I thought, we came from the Dakota’s to Hawaii to get away from the cold, and why did it have to be so damned cold in the center! Though I was scheduled for a 4 1/2 hour dialysis treatment, I ended up getting only about two. I guess that was one reason I didn’t feel the great improvement I was told I would get.  But I survived.

The next day we headed out to the stores to gather some insulation for the next treatment. We got me a down vest, a down comforter, long underwear (at the thrift store, only place to find long-johns in Hawaii). We also put together a fleece throw and a hot water bottle, and were ready for treatment number two. Believe it or not, I was still very cold during the treatment, and before we returned for round three we had two sleeping bags, the fleece to cover the cold plastic chair, mittens, scarf and the hot water bottle. Finally tolerable.

On the third day of treatment, Saturday, my AV Fistula (artery and vein connection for faster blood flow) was “infiltrated”. Infiltration happens when the needle being inserted goes through the vein and blood gets outside into the muscle.  This causes the area to swell and bruise. It makes everybody very, very nervous. The infiltrating nurse immediately consulted the head nurse and they scheduled me for “tunnel catheter” surgery the next day, Sunday!  A tunnel catheter is a a portal, in this case, placed in the neck and going inside the chest, shown in picture.We said “no way!” we are not ready for this one! They nurse told us we could call and consult the surgeon and see what he had to say. He said “ask around for the best “cannulater”, who is the best needle sticker in the dialysis center and give it a try next week.  Done! After that it went better.

After the first weeks endurance run, we came out of the dialysis center spent and wondering about it all. However, even though it was certainly challenging, and I didn’t feel any better yet, we still felt lucky to be in a treatment center on Kauai. When we were leaving that day after the infiltration, after the disappointment of not getting to even do my treatment, Julieah turned to me and said she wanted to give the people attending to us and the other in the center A BIG HUG of gratitude for their Aloha. Even though the Lihue Dialysis Center didn’t have the best equipment and the chairs were torn and tattered, the people there are solid gold. We counted our blessings again for living on this wonderful Island with its caring and heartfelt people.

We were in the dialysis center for 6 months before we were finally scheduled to go to Oahu for Home Dialysis training. This was a 6 week intensive, combining my treatments and Julieah’s training simultaneously.

Home Training Program

We began our Home Dialysis training in July, 2007. We hadn’t been in a bigger city since coming through San Francisco on our way to Kauai in January 2003. The first thing that hit us was the height of the buildings in Honolulu, and Waikiki. On Kauai it is law that no building can be higher than the tallest coconut tree. We actually experienced some vertigo as we looked up into the city skyscraper. We also experienced the weird feeling of the vibrations beneath our feet, stemming from the high volume of automobile traffic zooming around the islands multi lane highways, in comparison to Kauai which has one single lane highway. So suffice it to say, we had some acclimation to make. I was still pretty weak, and the various waves of stimuli were not nearly as soothing as the waves off the Kauai beaches we were usually on during most days. So somewhat shakely and in a daze, we made it to our hotel, which fortunately because the insurance travel company was late in getting our reservations in a dump off the beaten track, had us on the 20^th floor, two blocks off the Waikiki beaches.  Mahalo (thank you) to the Travel Gods for looking after us.

We began our training/dialysis the next morning in the basement Dialysis ward of Saint Francis hospital. We were still a bit shaky and whether imagined or real, the whole room we were in was vibrating in disharmonious resonance to the other sounds of a dialysis treatment center; alarms going off constantly, people expressing pain, discomforts and nauseous. Ahh the sweet sound of the healing environment! Julieah and I were both overwhelmed with it all and became uneasy and ourselves nauseated. Things didn’t get much better when Julieah was cannulating me (putting needles in). Her hands were visibly shacking and she had this somewhat desperate look in here eyes (only I noticed it). But she got it done.

Part of the challenge we experienced during training was that the person training us was a Home Peritoneal Dialysis nurse, who wasn’t familiar with the dialysis machine we were using. We were in fact the first people doing home hemo dialysis in Hawaii. So we were basically learning together and there were more than a few times I thought we should chuck the whole thing, but Julieah was determined, as she always is, to get it done. One memorable moment occurred when we had a water alarm and our trainer panicked. She sprinted towards the back of the machine and directly into the blood-lines connecting my arm to the dialysis system. Fortunately Julieah always acutely aware of what was happening, grabbed my bloodlines and held them against my arm until the nurse saw the problem and backed around the machine the other way. Suffice it to say, if Julieah hadn’t had her eye on the situation, having the needles pulled out of my access would have been disastrous for me.

We had a number of other “incidences” during training, many which are more common during dialysis. Dialysis centers are busy clinical spaces. Lot’s of pressure on everyone to tend to alarms, sick people and “side effects” stemming form time limits and the amount of fluids needed to be taken off. As soon as you enter the center you stand on a scale to see how much fluid you gained since your previous treatment. During a standard treatment week you dialyses three times, one day on, one day off, then two days off.  Imagine not peeing for two days.  You can gain a fair amount of fluids. The clinic has to take that fluid off, back to your “dry weight” in the time you are allotted for treatment, for me 4 ½ hours. Depending on the weight gain, the removal can be very challenging to the body and people often have serious cramps and low blood pressure. Not uncommon to see people on the verge of passing out, vomiting, crying, screaming and such. Often, not a very pleasant experience. Still, people going through dialysis, in general, are very grateful for the opportunity to stay alive. That’s part of the human experience. Endure to live another day!

Home at Last

So we got it done. Julieah got certified and we were on the way back home, to our own space to face the challenges and opportunities. Our first machine was a Fresenius Baby K.

This was basically the same system used in the local dialysis center, just a little newer model.  It took about 9 hours to do a treatment. Each treatment we had to check and disinfect the Aquaboss, the water purification system. Next the dialysis machine needed to disinfected, and blood lines strung, dialysate solutions made and then the machine had to do its check. This setup took around 4 hours. My treatment at that time was 4 ½ hours. Then there was a ½ hour clean up. We did this every other day. Initially it was very challenging, and often scary. We had a lot of alarms due to my fistula (blood line access) being “fussy”.  There were many time the arterial needle which draws blood out would suck on the arterial wall and result in alarms. Sometimes the machine would fail. Once Julieah had to restart the machine, during dialysis, 12 times! Sometimes it was just that the needles were stubborn getting in, taking up to an hour or more of patience, no-patience, cursing and pleading. I also was clotting a lot a first. Many times we were on crises calls to the local center asking for help on how to resolve some problem or another. They were great! Other times we were on with the dialysis machine technician in Seattle, who in spite of working at home with a new baby would work it out with us late into the night. We learned to be technicians also, with his help. We changed the heat pump when it went out, and once when the water system failed the tech had us pull out a heat sensor and take a toothpick and scrap off some corrosion. After a number of tries taking it out and replacing it we were back in action. One of the other challenges of doing our treatments at home was the amount of supplies we needed. Each month we received ¾ ton of fluids (Gallon jugs), powders and stuff. We were fortunate to have been living at the time in a big old plantation house, so we had the room. However it was a lot of work logging it all around. Because I had three lower back fractures, so limited in lifting weight, Julieah did the heavy lift. She always does the heavy lifting

In some ways the beginning challenges of doing dialysis at home reminds of when I first rode my horse.  I got him when he was 1 ½ years old. A very spirited and beautiful Arabian horse. As I watched him in corral, jumping off all fours, bucking and being a wild spirited animal, I thought, I’ll never be able to ride him. When he was 3 ½ I had trainer work with him. I started out riding Baison in an enclosed arena. There were a few moments, but overall it went well. Then the trainer dropped him off at my farm. I saddled him up and lead him to the top of a 10 acre alfalfa field. Nervous, both of us, as I mounted and nearly got bucked off. Hold on I thought as he settled down, and then the wild scary thrilling ride. Baison and I had some wild rides, with more than a few mishaps at first, but gradually we got into sync and few things can compare to getting in rhythm with your horse. The only thing that tops it is getting in rhythm with the person your in love with!

NxStage Portable Dialysis Machine

We were on the Baby K for about 3 years. Then we got the word the system we had read about and seen on line, the NxStage portable dialysis machine was coming to Hawaii.

We had already contacted the NxStage Company to see if we could get the chance to dialyze on it. We called, wrote, called and wrote again, as early as a year before starting dialysis.  But it took a number of years till Sheila Smith came to Hawaii to coordinate the Home program. She had used it in Virginia and understood its capabilities to save time, money and allow people to travel with it.  So we got the call and opportunity to be the first to train on it and use it. Off to Hilo, on the Big Island we went.

Our experience on the NxStage has not been without some challenges. But overall it has been a very positive one. First, the machine takes about ½ hour to set up, not 4 ½ as the Freseneus. Maintenance and upkeep is minimal. Though it is not light, about 90 pounds, it is portable. We have traveled three times with it back to where we have family, North Dakota and Minnesota. The first trip we dialyzed in a Motel 6 for 11 days. The next two trips in a warehouse owned by my brother Randy. It takes some effort to do it, but you maintain your own schedule and do not have to deal with some of the factors of going to a dialysis center.

Benefits of Dialyzing at Home

The benefits of being able to do my treatments at home far exceed the challenges. I control my own environment! Almost all of the negatives of in-center treatments are non-existent. I control my room temperature. I eat while I dialyze. In center, not even a piece of candy. I have popcorn and watch movies, sports, politics, while lounging in my massage chair.

In the Massage Chair
Doing a Treatment

What can I say? I am at Home!!! I do 6 treatments per week. My labs are always in a normal range. I don’t have swelling  in my feet, or excess fluids anywhere else. The 6 treatments a week is a commitment, but the benefits make it worth it. I can drink more fluid eat more liberally, though we are pretty disciplined on our diet. One of the difficult things for me is not being able to eat all the greens growing in our garden, or being very limiting on the papayas, mangoes, bananas and other tropical goodies growing in our yard. My potassium had gotten up in the range where we got scolded by our kidney doc, so we got a digital scale, made a chart of the foods we mostly eat, and cut back on the amounts. Back at normal levels and back into the good graces of Dr. Nada.

So I still need to be realistic about the fact I have no functional kidneys and need to rely on a machine to live, but still much more freedom than when doing the in-center treatment routine.

We decided to go on a raw food diet, purchased a high level juicer and some wheat-grass growing systems, grew grass, juiced it, drank it throughout the day and also chewed it. Julieah got into making these awesome green drinks with our juicer and our blender. We would shop at the local farmers markets for everything green we could find, green leafy stuff, avocados, kale, collards, you name it. If we found it it put it in the drink. Along with the greens we put in Hawaiian red peppers (Hot Hot!) lemons, garlic, celery to juice it up. The drink was great, but probably deadly for someone with kidney failure; way, way to much potassium. Aw well, live and learn (or not). So I got sicker.

I would in the morning after fitful sleeps, vomite and felt like *&^%$ throughout the day. By the time my GFR ( the measure of how much fluids were getting though my kidneys) level dropped to 5, I was in trouble, not just sick, but dieing. I was extremely anemic, nauseous all the time, and so physically fatigued that I had a difficult time walking up three stairs to get into the house. Julieah, bless her soul, never gave up. Besides the nutritional program she put together, she went the further effort and built a sweat lodge out of lava rock and canvas, heated rocks on a fire, hauled them into the sweat lodge, and poured water on them, all to try and cleans toxins which were building up in me. Julieah is an Angel. Without her by my side, with unconditional love and support, I wouldn’t be writing this. Then one day it was evident it was time to get on dialysis.

I was sitting on our couch and I felt the hand of death take a good hold of me, and I told Julieah it was time. So we contacted Dr. Nada who got us scheduled into one of the two dialysis centers here on Kauai. It took a few very challenging days before they could fit us in and it was a long, very trying wait. Dr. Nada assured us that I would feel great after the first dialysis treatment, and I thought, I’ll be happy if I just get to the treatment before I die, and if I just feel a little more life after. The first dialysis treatment was horrible and I felt like ***&&^%% the next day. Got up, threw up and wondered if Dr. Nada wasn’t the one who felt much better, having got me at last on dialysis.

Besides having what they refer to as a “fussy Fistula”, which required about an hour or more to get needles in and not alarming, it was like being in a cold winters day, so cold that my blood pressure went sky-high and I felt the cold throughout my body to the point I almost panicked and jumped out of the chair. The nurses often joked during the 6 months we were there in center, that they often expected it to snow. I thought, we came from the Dakota’s to Hawaii to get away from the cold, and why did it have to be so damned cold in the center! Though I was scheduled for a 4 1/2 hour dialysis treatment, I ended up getting only about two. I guess that was one reason I didn’t feel the great improvement I was told I would get. But I survived.

The next day we headed out to the stores to gather some insulation for the next treatment. We got me a down vest, a down comforter, long underwear (at the thrift store, only place to find long-johns in Hawaii). We also put together a fleece throw and a hot water bottle, and were ready for treatment number two. Believe it or not, I was still very cold during the treatment, and before we returned for round three we had two sleeping bags, the fleece to cover the cold plastic chair, mittens, scarf and the hot water bottle. Finally tolerable.

Tunnel Catheter

On the third day of treatment, Saturday, my AV Fistula (artery and vein connection for faster blood flow) was “infiltrated”. Infiltration happens when the needle being inserted goes through the vein and blood gets outside into the muscle. This causes the area to swell and bruise. It makes everybody very, very nervous. The infiltrating nurse immediately consulted the head nurse and they scheduled me for “tunnel catheter” surgery the next day, Sunday! A tunnel catheter is a a portal, in this case, placed in the neck and going inside the chest, shown in picture.We said “no way!” we are not ready for this one! They nurse told us we could call and consult the surgeon and see what he had to say. He said “ask around for the best “cannulater”, who is the best needle sticker in the dialysis center and give it a try next week. Done! After that it went better.

After the first weeks endurance run, we came out of the dialysis center spent and wondering about it all. However, even though it was certainly challenging, and I didn’t feel any better yet, we still felt lucky to be in a treatment center on Kauai. When we were leaving that day after the infiltration, after the disappointment of not getting to even do my treatment, Julieah turned to me and said she wanted to give the people attending to us and the other in the center A BIG HUG of gratitude for their Aloha. Even though the Lihue Dialysis Center didn’t have the best equipment and the chairs were torn and tattered, the people there are solid gold. We counted our blessings again for living on this wonderful Island with its caring and heartfelt people.

We were in the dialysis center for 6 months before we were finally scheduled to go to Oahu for Home Dialysis training. This was a 6 week intensive, combining my treatments and Julieah’s training simultaneously.

Home Training Program

We began our Home Dialysis training in July, 2007. We hadn’t been in a bigger city since coming through San Francisco on our way to Kauai in January 2003. The first thing that hit us was the height of the buildings in Honolulu, and Waikiki. On Kauai it is law that no building can be higher than the tallest coconut tree. We actually experienced some vertigo as we looked up into the city skyscraper. We also experienced the weird feeling of the vibrations beneath our feet, stemming from the high volume of automobile traffic zooming around the islands multi lane highways, in comparison to Kauai which has one single lane highway. So suffice it to say, we had some acclimation to make. I was still pretty weak, and the various waves of stimuli were not nearly as soothing as the waves off the Kauai beaches we were usually on during most days. So somewhat shakely and in a daze, we made it to our hotel, which fortunately because the insurance travel company was late in getting our reservations in a dump off the beaten track, had us on the 20th floor, two blocks off the Waikiki beaches. Mahalo (thank you) to the Travel Gods for looking after us.

We began our training/dialysis the next morning in the basement Dialysis ward of Saint Francis hospital. We were still a bit shaky and whether imagined or real, the whole room we were in was vibrating in disharmonious resonance to the other sounds of a dialysis treatment center; alarms going off constantly, people expressing pain, discomforts and nauseous. Ahh the sweet sound of the healing environment! Julieah and I were both overwhelmed with it all and became uneasy and ourselves nauseated. Things didn’t get much better when Julieah was cannulating me (putting needles in). Her hands were visibly shacking and she had this somewhat desperate look in here eyes (only I noticed it). But she got it done.

Part of the challenge we experienced during training was that the person training us was a Home Peritoneal Dialysis nurse, who wasn’t familiar with the dialysis machine we were using. We were in fact the first people doing home hemo dialysis in Hawaii. So we were basically learning together and there were more than a few times I thought we should chuck the whole thing, but Julieah was determined, as she always is, to get it done. One memorable moment occurred when we had a water alarm and our trainer panicked. She sprinted towards the back of the machine and directly into the blood-lines connecting my arm to the dialysis system. Fortunately Julieah always acutely aware of what was happening, grabbed my bloodlines and held them against my arm until the nurse saw the problem and backed around the machine the other way. Suffice it to say, if Julieah hadn’t had her eye on the situation, having the needles pulled out of my access would have been disastrous for me.

We had a number of other “incidences” during training, many which are more common during dialysis. Dialysis centers are busy clinical spaces. Lot’s of pressure on everyone to tend to alarms, sick people and “side effects” stemming form time limits and the amount of fluids needed to be taken off. As soon as you enter the center you stand on a scale to see how much fluid you gained since your previous treatment. During a standard treatment week you dialyses three times, one day on, one day off, then two days off. Imagine not peeing for two days. You can gain a fair amount of fluids. The clinic has to take that fluid off, back to your “dry weight” in the time you are allotted for treatment, for me 4 ½ hours. Depending on the weight gain, the removal can be very challenging to the body and people often have serious cramps and low blood pressure. Not uncommon to see people on the verge of passing out, vomiting, crying, screaming and such. Often, not a very pleasant experience. Still, people going through dialysis, in general, are very grateful for the opportunity to stay alive. That’s part of the human experience. Endure to live another day!

Home at Last

So we got it done. Julieah got certified and we were on the way back home, to our own space to face the challenges and opportunities. Our first machine was a Fresenius Baby K.

Fresenius Baby K

This was basically the same system used in the local dialysis center, just a little newer model. It took about 9 hours to do a treatment. Each treatment we had to check and disinfect the Aquaboss, the water purification system. Next the dialysis machine needed to disinfected, and blood lines strung, dialysate solutions made and then the machine had to do its check. This setup took around 4 hours. My treatment at that time was 4 ½ hours. Then there was a ½ hour clean up. We did this every other day. Initially it was very challenging, and often scary. We had a lot of alarms due to my fistula (blood line access) being “fussy”. There were many time the arterial needle which draws blood out would suck on the arterial wall and result in alarms. Sometimes the machine would fail. Once Julieah had to restart the machine, during dialysis, 12 times! Sometimes it was just that the needles were stubborn getting in, taking up to an hour or more of patience, no-patience, cursing and pleading. I also was clotting a lot a first. Many times we were on crises calls to the local center asking for help on how to resolve some problem or another. They were great! Other times we were on with the dialysis machine technician in Seattle, who in spite of working at home with a new baby would work it out with us late into the night. We learned to be technicians also, with his help. We changed the heat pump when it went out, and once when the water system failed the tech had us pull out a heat sensor and take a toothpick and scrap off some corrosion. After a number of tries taking it out and replacing it we were back in action. One of the other challenges of doing our treatments at home was the amount of supplies we needed. Each month we received ¾ ton of fluids (Gallon jugs), powders and stuff. We were fortunate to have been living at the time in a big old plantation house, so we had the room. However it was a lot of work logging it all around. Because I had three lower back fractures, so limited in lifting weight, Julieah did the heavy lift. She always does the heavy lifting

In some ways the beginning challenges of doing dialysis at home reminds of when I first rode my horse. I got him when he was 1 ½ years old. A very spirited and beautiful Arabian horse. As I watched him in corral, jumping off all fours, bucking and being a wild spirited animal, I thought, I’ll never be able to ride him. When he was 3 ½ I had trainer work with him. I started out riding Baison in an enclosed arena. There were a few moments, but overall it went well. Then the trainer dropped him off at my farm. I saddled him up and lead him to the top of a 10 acre alfalfa field. Nervous, both of us, as I mounted and nearly got bucked off. Hold on I thought as he settled down, and then the wild scary thrilling ride. Baison and I had some wild rides, with more than a few mishaps at first, but gradually we got into sync and few things can compare to getting in rhythm with your horse. The only thing that tops it is getting in rhythm with the person your in love with!

NxStage Portable Dialysis Machine

We were on the Baby K for about 3 years. Then we got the word the system we had read about and seen on line, the NxStage portable dialysis machine was coming to Hawaii.

NxStage

We had already contacted the NxStage Company to see if we could get the chance to dialyze on it. We called, wrote, called and wrote again, as early as a year before starting dialysis. But it took a number of years till Sheila Smith came to Hawaii to coordinate the Home program. She had used it in Virginia and understood its capabilities to save time, money and allow people to travel with it. So we got the call and opportunity to be the first to train on it and use it. Off to Hilo, on the Big Island we went.

In Motel 6

Our experience on the NxStage has not been without some challenges. But overall it has been a very positive one. First, the machine takes about ½ hour to set up, not 4 ½ as the Freseneus. Maintenance and upkeep is minimal. Though it is not light, about 90 pounds, it is portable. We have traveled three times with it back to where we have family, North Dakota and Minnesota. The first trip we dialyzed in a Motel 6 for 11 days. The next two trips in a warehouse owned by my brother Randy. It takes some effort to do it, but you maintain your own schedule and do not have to deal with some of the factors of going to a dialysis center.

Benefits of Dialyzing at Home

The benefits of being able to do my treatments at home far exceed the challenges. I control my own environment! Almost all of the negatives of in-center treatments are non-existent. I control my room temperature. I eat while I dialyze. In center, not even a piece of candy. I have popcorn and watch movies, sports, politics, while lounging in my massage chair.

In the Massage Chair
Doing a Treatment

What can I say? I am at Home!!! I do 6 treatments per week. My labs are always in a normal range. I don’t have swelling in my feet, or excess fluids anywhere else. The 6 treatments a week is a commitment, but the benefits make it worth it. I can drink more fluid eat more liberally, though we are pretty disciplined on our diet. One of the difficult things for me is not being able to eat all the greens growing in our garden, or being very limiting on the papayas, mangoes, bananas and other tropical goodies growing in our yard. My potassium had gotten up in the range where we got scolded by our kidney doc, so we got a digital scale, made a chart of the foods we mostly eat, and cut back on the amounts. Back at normal levels and back into the good graces of Dr. Nada.

So I still need to be realistic about the fact I have no functional kidneys and need to rely on a machine to live, but still much more freedom than when doing the in-center treatment routine.