thoughts in the nite..

Thank you . Off to the dialysis center for the afternoon.. Have a great day folks! Lj.

post scrip; The dialysis center was again a horrible experience! the nurses tried to run the machine to fast for a new fistula , and blew the dam thing in two spots! now i have to wait an additional 2 days, but my arm looks horrid, and feels even worse! I am told that it is common for this to happen when fistula's haven't had enough time for the tissue to firm up, and the venous walls are fragile, and still growing to accommodate the extreme blood flow they must provide. This can cause the fistula - which is basically a vein that is hooked to an artery, and an ensuing growth, caused by the dramatic increase in pressure inside the vein, occurs, creating what we know as a Fistula, to blow out around the needles, or simply burst like a water balloon filled too fast or too full! Now that we know what we are dealing with, maybe someone can find a way to fix it? My life does kinda hang on the answer ...

Another day, hope you are all well, my day is good. today i go back for another try at the dialysis center. I am really hopeful that today will run well. I am getting more and more symptomatic with the passing of each day! My legs are swollen from the time i arise from sleep to the time I finally can stand the pain no more and must lay down. i feel like crap because i am carrying a but load of toxins in my system ,with no way of dispersing them. I try not to complain, it only stresses my wife out ,and the kids start having sympathy pains/ behaviors. My oldest little one, 7 2/3 .. is becoming a little mini me! Everywhere i hurt she hurts, when my legs are too swollen to walk, sure enough- her legs will begin hurting and within a few moments she will blow it up in her mind until she gets so upset she starts crying, and my wife gets pissed at me? We have her in counseling, but that has turned into a attention gimmick, which she has learned to play very well.! I am really frustrated, but i don't want to just tell her to clam up, and i definitely do want to feed into it by pampering her.. Kids....
Well today is going to be interesting to say the least. lj.miker

Up sick w a cold read your thread.
I do hope you have a good day at dialysis.
I would say keep your head up but you already seem to.

lumberjack.mr said:

Another day, hope you are all well, my day is good. today i go back for another try at the dialysis center. I am really hopeful that today will run well. I am getting more and more symptomatic with the passing of each day! My legs are swollen from the time i arise from sleep to the time I finally can stand the pain no more and must lay down. i feel like crap because i am carrying a but load of toxins in my system ,with no way of dispersing them. I try not to complain, it only stresses my wife out ,and the kids start having sympathy pains/ behaviors. My oldest little one, 7 2/3 .. is becoming a little mini me! Everywhere i hurt she hurts, when my legs are too swollen to walk, sure enough- her legs will begin hurting and within a few moments she will blow it up in her mind until she gets so upset she starts crying, and my wife gets pissed at me? We have her in counseling, but that has turned into a attention gimmick, which she has learned to play very well.! I am really frustrated, but i don't want to just tell her to clam up, and i definitely do want to feed into it by pampering her.. Kids....
Well today is going to be interesting to say the least. lj.miker

Click to expand...

Hope things get better for your little girl and yourself. Living with disease, the ups and downs mentally and physically can be more of a challenge than we feel we can bare, at times. I tend to self destruct when I feel so lousy for so long. Makes the 'better' days even gooder! Hope you have a gooder day soon. jpt

Today was better, at least this time they didn't blow the fistula. I hope it gets easier, but expect it too take a while. The offset of the entire event was the attitude of the nurses, and their genuine concern for my comfort and care. I feel more welcome at the Sherman facility. I know that sounds crazy ; to feel welcome at a dialysis center, but it beats the hell out of feeling like a problem! My arm will take several days for all of the bruising to dissipate, but i am told it often occurs that a new fistula is too fragile in the beginning, from being stretched to accommodate the blood flow necessary to do dialysis. I don't know how often it actually happens, nobody i have spoken with has had it happen to them. More likely; it is what they were instructed to tell me. Amazing how much one phone call can accomplish- to the right person..
I'm tired and the pain is back, Mike Lj.

tomorrow at noon! Thats the next round in the chair. My arm is feeling better, but it is still inflamed and dark purple in the elbow and lower bicep muscle. The nurses all seemed to have one common thread- the doctor that started all of the screw-ups , is just that- a screw up! i told them i went to Dallas and they were all amazed about the size and quality of the fistula. Now the trick is to get it seasoned in, or toughened up a little, then we can relax a little. Be so glad to be back on 100& of dialysis clearance. Getting poor treatment makes for a lousy day! Lj.

Another treatment done. Another day of living. I was told today that an incredible 19 patients were deceased in the last 2 months! Some just gave out and lost the fight, most just gave up and stopped treatment! That says a hell of a lot about the mental impact permanent life support has on a person, and their loved ones.
For now, I'm good. I have until Tuesday at noon to convince myself it is getting better, and the pain is less each time. How many years of this will i endure? I've been fighting for ten years now, and counting.. I'm so tired of being in pain, and seeing my loved ones in sorrow. I get so angry! I want to shout out " this is not what i signed up for" I am not having any fun being sick all of the time! I hate being the reason we can plan nothing in advance, because my health is too frail, and unpredictable! I hate being the one sitting on the sidelines watching everyone else live! I equally hate the looks of pity from folks when they see my girls! How can all of this be a destiny ? I have been in some of the worst moments of my life, in my memories and in my present, they all come out the same. I survive, to endure the next windfall, or seizure, or hospitalization. i have in my years of effort; accomplished so little of the goals and desires of my younger zeal. I now hope mostly for a comfortable and peaceful passing for me; life for my wife and children. i am tired and weak, from a life of strife and struggle. living on the streets at age 15, there are few states in which i have not traveled. I hitch=hiked across this country and back again - several times. I long for the place i found complete contentment in my adolescence, the island of my awakening Kauai. I have learned many things in my life , pain, fear,loathing, disgust. All taught to me be a cold and ruthless bitch called life. Still, in my hours of hope; it is my ability, and desire to help others that i wish most to express. I have always stood proud of my deeds, and the results they accomplished, but now my pride is defeated, and my will to survive is so tarnished. i find joy in my grand children's laughter, the comfort of a loyal dog by my side, and a loving home with my wife and children, and a garden where i may sit and smell the roses- or Other floWers.. Bring on spring - i'm tired of this grey sky, cold ass, wind chapped weather! MikeLJ.

today was a little bit rough. I have not gotten completely balanced out on hemo yet, so I have up and down days.. Not that i really feel that terrible, just tired and lethargic. I try to keep active, and limit my daytime sleeping to times when i would be on dialysis- to make it easier to sleep in the chair. The nurses told me last time in; if i would take a couple of valium before i walk in, they would give me 100ml. of Benedryl as soon as they got me hooked up. I asked if it would help and was informed that the combination of the two is the former Pre-op shot for patients who were easily stressed, to settle them before anesthesia. I have tried this inadvertently in the past and got a real good nap out of the deal. I think it will be a little harder with those dam spikes in my arm, but we'll definitely find out tomorrow. My arm is finally starting to settle down, most of the inflammation and discoloration have dissipated. The fistula is still very fresh and fragile, but has grown tremendously, and should last for years. I know that my stress level climbs by the hour from the time I finish treatment, until the time of my next treatment. I feel like I have just been thru a Marine obstacle course every time I come home from treatment. All i want to do is sleep. Oddly enough, that's also a prime symptom of too little dialysis? Can't win if / or -- .and tomorrow will come ; like it or not.. Lj.mike

good night folks; the center callled me in early.. 6am. Get it over with and i can be home in time for lunch with the girls. my stress level just sky rocketed, but it is what it is.. lj.

Hello,
Stay strong bro! You have a lot to live for and can get thru this. A lot is mental you know also please don't forget to keep to a strict diet and take lots of vitamins too . I strongly believe in this it can help the body heal itself and give you energy to boot. Sdd

I couldn't get by without mmj you are also right?

have a good day sir, enjoy some sunshine and a fat bowl, or gummy bear for me!
i am off to the center- valium, dialysis bag, Fat Joint for the drive over, head phones and blindfold for once i get running... hell of a check list... uuuggghhh... Lj.mikke

Why the hell is dialysis so dam draining!!?? I have at least a dozen things i need to be doing, but i'll be danged if i have the will to do even one! today's treatment went well enough. The pain didn't become really intense until near the end. I had them try turning down the rate of pull; to reduce the vibration, and that only made it more demanding of conscious thought. The fistula is still really fragile , so any movement is a strict NO NO, and could result in serious damage to the fistula. I can't explain how hard it is to sit still for four hours+, with 2 18 gauge needles drilled into your arm, even worse when they are vibrating from the pulse of the machine. by the end of the treatment, I feel like there is a large hornet on my arm stinging me over and over in the same spot- and I have to remain absolutely still! Today was my first bleed. I was disconnected after treatment, and after holding the puncture sites for several minutes with cotton balls, I assumed they had closed and I was good to stand for my post blood pressure.. Not apparently; I discarded the cotton compress' and stood for the blood pressure cuff to tighten, as it did, my right arm started stream spraying blood from one of the puncture sites! I gotta tell you; when you see blood spraying out of you- literally, it will freak you out! I immediately did what I should'nt have - I grabbed my arm to put pressure on it? It had to be scrubbed again and dressed to stop the leakage, of which very nearly resulted in my falling out unconscious! at least I did'nt seize out, and wale up in the hospital - again..
Definately nap time; right after I finish this joi_t ... lj.

This morning is pretty tough. I did'nt sleep well last night, and I have dialysis at noon. Somehow I have to remain awake until treatment time. I can really tell when i get a toxin build up in my system. Not only do I start swelling in my hands and feet, but i feel like I have been working 7 days a week for months! Just so dang tired and drained feeling, that all i have any desire to do is go to lay down somewhere. I hate feeling like this! I feel like the day is wasted before i ever get started! At least the inflammation in my arm has diminished to little of none. hope that the treatment will be less painful. And I have a good fire going in the wood stove . one of those days...

Best wishes for you my friend.

Typed then lost....

If your able you have a pack or two with your name on 'em.


You & yours are in my prayers
In CHRIST
S

Thank you for your kind words, today was better. I had a difficult time trying to sleep during treatment, but at least the needles were less painful today. I feel like i have been running for the last two hours! Thank God it is getting better.
I have a lot on my mind tonight, but i don't have the energy to type it all out. LOL ! definitely a dialysis day..
The weather here is moderately cold~ upper 20's with a strong north wind. I have to keep the fire burning tonight, so I guess i better get started carrying in firewood for the stove.. Hope everyone else has a great evening, a restful slumber, and a brighter tomorrow! Lj.mike

damn man..i hope things get easier for you..hang tough bro

at last another weekend has passed, dialysis in the morning 6:am or noon- depending on the turnout.. If I had been asked a couple of weeks ago; what is the hardest part- i probably would've said the Needles and the pulsing of the machine, or maybe the constant alarms - that ring in your ears nite and day! Now I would answer differently. Today I would say seeing the patients that are in the advanced stages of diabetic renal failure. They are the ones who have it rough. I/we all deal with the mental issues of being terminal, but the physical toll they are forced to pay is horridly more debilitating than the disease that is upon me. Few are able to walk; if they have legs left. The ones that can do little more than stand for a wheel chair to be provided them, and must some how deal with the trauma of their memories, they are the ones I admire, for their courage, tenacity, and perseverance. I get angry or start looking in the face of pity, and I think of the course of their days compared to my own. I find the strength to slap myself back into reality.
Isn't it odd how the things we spend our entire lives trying to secure, provide, and treasure, become the our greatest loss at the moment of death. Our loved ones, children, spouses, brother and alike , all gone in a flash. The land we so vainly call our own , to be handed in deed to the designee of or last will. The monetary assets rank high on the list of priority, but I hope and believe it will be my wisdom of pain and suffering, that will be my legacy, for in that wisdom is the greatest strength I could ever lend. I: I am one to defy logic and medically speaking i am an uncharted water. None of the normal align responses to various modality' of treatment, are presented by me. The chemical imbalances in my body have the medical community at a stump. I am fifty years of age and have been under the knife thirty three times! I have survived head on collisions with with tractor trailer loaded with logs, crashing a motorcycle at 135mph. and spending 3 months in a coma, I have even had a Hammer head shark hit my catch sack , spear fishing at night on the island, and drag me down to depth beyond any reason to survive,but i am still here. I can still function, and drive myself wherever i chose, make my own decisions about my healthcare, and I can still go home to my loving wife' & children's arms. I fear not for I ; At peace in my present, I await the future, and I prepare. All the while I must live, and know that I am truly existing at the end of an electrical outlet, and a dialysis machine. My demise awaits me in the shadows of time, beyond the considerations of present zeal or greed or lust. My demise is smaller that a spit cell of bacteria, or viral influence upon society. I can not see me tormentor, but I feel it's presence grow stronger as I wait. There is frequently a clam before a great storm, and a period of morning in it's wake. This be my calm,or the prelude to my great storm. Time is a relentless obstacle and foe. Lj.mike

Another one of those days... Up extra early so I will be able to sleep in the chair. I have a hundred things I need to be doing! And they all start with getting my but out there and staking out the greenhouse I want to build. I have the raw cedar logs for the frame of it. I just have to garner the energy from somewhere to go ahead and dig the holes for the corner logs. Problem is this dam yard is about 6 in. of dirt and all rock underneath! When we put the chain-link fence around the yard- A full acre, we had to rent a 90lb. jack-hammer to break the rock up so we could set the fence post! I might have a bigger problem with this than i think, as I am pretty sure a 90 lb. j-hammer would be little too much for me and my wife to operate now. I might be able to pick it up, but I am pretty sure that would be about it! I am up on top of a hill, overlooking a really big lake- miles of water! The wind up here can be pretty outrageous, and when those Texas cloud burst storms come thru, it is common for 60=80 mph. winds to precede them. So i need the corner post and preferably the side and center brace- poles to be it the ground at least three feet- set in concrete. and large enough for 14" logs. I would really like to go with an all glass roof, but the occasional hail storm would require some way of covering it up in a hurry. I have a large 40/x40' heavy duty truck tarp. I suppose I could devise some way of rolling in up to the center of the roof and two people would be able to unroll and stake it down relatively easy..
I think that would be great! Then I could just frame and plastic the rest, put a door on one end and a couple of vents- green house for me. Now I just have to find the energy to do all of this! I still haven't finished out the kids play house, and it has been three years since i started that little two story wonder! I finally got all of the doors built for it last fall, but i still need to trim it out, and put some sheeting on the interior walls, and insulation for the cold winter winds, and a light on both floors in case they want to have a camping party or something. Maybe a little over board for a play house ? When i was a kid we played in barns, but there aren't any near here .. lol. you'd be amazed at how long kids can occupy themselves in a barn. We had forts built in the hay bale stacks, and passages into grain bins, and feed chutes. I can tell you when you parents say go feed the cows and clean up the barn- it means get lost for a while... fine in the summer, but in the winter it's a bitch to find a place out of the wind and some what warm- somehow barns always seem a little warmer. WE don't have a barn, so an insulated playhouse isn't unusual at all..? LOl
Memories... Lj.mike