Why I refused Transplantation
An amazing cat, pity about the (feline) Lukaemia!
Types of Treatment for Renal Failure
My Kidneys are treated by:-
How many renal patients have had transplant/s?
First: Brief story of the cat
Before I talk of my own experiences, I wish a moment to talk of my pet cat who died as a result of kidney problems caused by a tragic, regrettable incident.
Cat's chase mice. Owner gets concerned at 1. distress of a life form, 2. Pet bringing rodents into house. 3. Adverse reaction to violence due to particular upbringing, resulted in panic.
Trying to grab at the cat to pull it away from the mouse. Momentum took over as I had to go at pace, strength becomes three fold with adrenalin. And to my horror. I believe I damaged that poor cats insides, in my failed attempt to grab the cat away before he pounced on that mouse again.
Now, can I forgive myself that I lost that beloved and sentimentally precious cat. Well advice is to try.
This in no way reflectas why I really do not want the major surgery to implant a permanent foriegn object into my body! (I can promise you that!)
To me, such things are barbaric, although clever in the short term. We do not know the long term damage. Such as the effects of weakening the immune system could cause bugs that were previously too weak to last, now find a place to thrive. We are already seeing new super bugs that weren't heard of before such technology!
Choose Wisely, TAKE CARE!
You may be desperate not to have to face dialysis, The media has been instructed to promote a "tranny" as some kind of "miracle", that's to do with funding. The literacy only say's 50% of transplanted kidneys are still working after 1 year, Half... They don't say at what percentage of kidney function. They don't say anything about how many 'work' after two years, or how long that patient has spent in hospital due to complications,
for example The immuno-Supressants that have to be given to prevent the body rejecting the organ. Severe tablets that prevent the immune system from working properly opening up the patient to much greater risk of going down with every little thing going; three or more times harder, and for longer than a healthy person. Not only the little things but having to wear thick skin creams on a cloudy day, and still being at great risk of such things as Cancer! -More than most!
Even doctors -when pressed say "It's only a holiday from dialysis", and yet it's extremely major surgery, and some-one elses DNA that is not removed when it does fail. Due to the high risk of dying even in the first place from the operation!
Considering a live donor? That person could die too, in the operation. Or what happens if down the line something happens to them, and they would've had a better chance with both kidneys -for whatever reason. (best not discussed here as we don't want to tempt fate -a suppostition that I will respect).
Home-Hemo is a better option, if you can find some-one you can get on with who is willing to learn to put you on and take you off the machine 5 or 6 times a week. Preferably they'll live near, the roll can be shared. And is less of a trauma too for that person that cares enough to have offered live donation. As this is much more gentle than having to go to a unit. It can be done overnight at a slower rate (better for the heart). This I would choose if I could, not to be confused with any PD *(Peritoneal) as this wears out the stomach, and tends to be the doctors preferred method for those on the transplant list. It is often a precursor to a transplant. Home-Haemodialysis on the other hand has the longest rate of survival!
renal failure: Self management/diaysis/transplant/palliative
Why should which path I choose when diagnosed with an illness be subject to so much scrutiny and manipulations, and even derision?
Warning: This may be hard for some to read!
"We need to know that your decision to end treatment is being made for the right reasons", What do they consider to be the 'right' reasons. How can some-one with little to nothing wrong with them consider themselves in a position to judge what is right or wrong for some-one who is worse off, far worse off! 2. Is the philosophy/ideal "life no matter what /at all costs" an excuse to fall short on health care and not bother to find cures only coping mechanisms. No-one has come up with any authoritative causes for illnesses, yet when some-one else starts speaking of things and making diagnosises, they are soon stopped with threats of legal action against them. Is a cure illegal so that people can continue to make money from those in need, whether directly or indirectly? As such I cannot say publically what I believe the most common causes are for risk of being shut down!
Is it actually caring to say, act out or imply that "if you don't agree with me / comply with my advice/decision for you then there must be something wrong with you!" No, for it is an attempt to control that should not be trusted. And even resisted because if you allow some-one to control you, you become their slave. If doctors had all the answers wouldn't they cure the problem? So how can they arrogantly say they are right?
I tell them when I have found and completed a task to make my existence less pointless, and am satisfied within myself that I have done enough to enable safe passage home then I reserve the right to end treatment at any point thereafter. I understand that this is not as easy as it sounds, and I must be certain as there might not be a dialysis place to go back to, incase of change of mind. I remain convinced though that by then this would be extremely unlikely -it would in fact require a dream where god/JC appears saying we're not ready for you yet. This is unlikely because treatment is mankinds way of keeping us here.
God whom knowing everything and being all loving would I believe come (before this) in order not to cause the medics any hassle. Especially, if what I heard on the radio where some psychic said "even the lowest of the low have been offered entry into heaven." though this may be upon repentence. I cannot see how the wish to end a pretty pointless existence would be deemed anywhere near the lowest. I could be moving on learning where I went wrong here, and taking steps for next time. Unless there's something about suffering to its full extent so as to really learn where things went wrong and the full extent of their consequences -but this may make me never want to visit anywhere again! -What good would that do??? Enough of the Karmic stuff! -for now.
Treatments that add length to life/existence, are considered to be giving borrowed time. Some see this as a negative.offensive outlook. I can't see anything wrong with it. The life's for living approach is all well and good if all your here to do is play around or mess about, and for you I am sure this life brings its own rewards, but I want to achieve something and be remembered in some nice, respectful way by the masses.
I have to admit that the daily cleaning chores get in the way when living, being all alone and I can appreciate very much the saying that behind every great man there is a great woman .
It seems that when every-one chases greatness/one avenue, the whole world becomes lost. It's not strictly true that 'a womans work is never done' because it could be considered it is done once her man has succeeded, though of course there will always be housework for as long as there is houses.
The truth is people now leave people when they become ill, what ever happened to "In Sickness and in health"? Neither am I rich in fame nor fortune; nor blessed with much by way of social graces -or it hasn't come out yet, if I am. So I am constrained to the realms of 'not up to scratch', like the footballer deamed 'surplus to requirements', not the managers first choice! Not considered good enough, but who wrote the rule or got and promoted the idea 'it's the same for everybody!' -is it hellers like!!! The game of life has many tests, dependent on situation etc. it holds some back while proppelling others forward. While it isn't necessarily the best that win in life. I have personal proof that if your deemed 'too good' you get cut down like grass being hit by a lawnmower.
The things I can't do now, I could not do with a transplant either. Therefore I don't gain much!
"Yeh, but you'll have freedom from coming here 3xweek!"
Yeh, if the thing works, and while it lasts. I won't be free of all the other things that come with it like going down with every illness that comes along. Like having to wear creams on even the cloudiest day to protect the skin from cancer. I would rather die of what I have than wait around long enough to pick up more and more distasteful things that further prevent any quality of life.
People always seem to criticise my being whenever I refuse to say what they want to hear. -or do what THEY want me to!
Do they think I am still wet behind the ears and will fall for this manipulation tactic? Some genuinely believe their point of view, and those that aren't on some power trip struggle to see the situation of any-one else. Yet, expect others to ask 'how high?' when they say jump. -It's they who should go jump!
e.g. "Your being negative/pessimistic"
I am being realistic, and in trying to find something to achieve before taking my leave of this otherwise pointless existence I am actually being positive. But if my wish becomes impossible to fulfill then I would be stupid to remain when I can't reach it!
If the report sounds pessimistic, you try to find something positive about something that has no cure! Not being suitable for the best treatment being overnight haemo-dialysis due to place may not be suitable, not having persons with me to help put me on & take me off the machine. (I think otherwise I could change their mind about the line had I the right persons helping), as on the plus side I have no pets or children to make my place less clean! No curious kid to sneak in the room to explore "The Darlek" and getting grubby mits and breathing all over it. I don't want PD or CAPD or anything with a tube in the stomach as the stomach wears out eventually -though something the doctors don't tell us when they're putting on their sales pitch- and it is generally a pre-cursor to a transplant. Not to mention all the other manipulations and even bullying I got from some of these 'people'.
Haemodialysing also has this manipulation that the newcomer should be aware of. And it is still very painful to me when I think I was left just to fall for it.
The nurse who kept coming and taking the maximum regulations permitted her, even when I came on at and even slightly under my normal healthy weight that I had been all my adult life. She took my health away when she put me far below a healthy weight, the body tries to replace the fluid lost but can't work quick enough against the repeated onslaught of dialot! And while all that is healthy is being drained out this way, it can only be replaced with inferior quality as not much time to assymilate it due to the ongoing onslaught of "D." Eventually the body stopps urine production to try to compensate, but the bloody staff kept going. It seems uniform and they won't ever be happy until every patient weighs nothing! Q. Is this yet another manipulation to get people on the transplant list? And how much do these people make from it?
Donor: Why should some-one have to die that I may live? It is an afront to Christians as the saying is actually of Jesus Christ dying to be raised to the afterlife rather than its alternatives so that the rest of mankind could also in death from this world find the afterlife reserved for the soul -The soul is something that the sciences in this world haven't found, and best that it be hidden from those meddlers! I feel the term "Allive" to them is just a mechanism, like an on/off switch for a light bulb. I wrote plenty in the Hub "immortality in 30 years" to explore how this would actually be a bad thing. My belief is we are in a dark age of seeking power rather than welfare trying to control life instead of allowing it to take us through our prescribed learning. In this grandiose quest doctors and researchers waste money on precarious and experimental practices using people as guinea pigs with treatments that don't work/properly/for llong..., or allow mankind to realise the importance of life, as does technology nummify us into a psuedo existence or virtual reality, zombified by the unreal, and never appreciating, certainly never to full extent appreciating the true value of life for the living. I believe before technology, tv etc. raised its ugly head people learned that love of well mannered behaviour and appreciation of knowing some-one while they were still around. And being poor meant the little extras people got from time to time when they could meant they knew how to appreciate the little things more than these "big" things that we take for granted today. My point is society is not what it was so I won't be missing much!
Living donor: I refused two offers, my dad was stubborn shouting down the phone, when I eventually managed to get through to what must be rhinoserous skin between his ears! He blasted "I want to be a saint". I felt he had a misconception as to what this takes and actually is. I don't think any-one with any sense gives some-one their biggest honour when they throw away something they might later need themselves for survival. And besides his persistence, adamance suggests he had the wrong motives and so would actually be dissapointed himself. At one point it looked like he was going to pull them out himself almost! A doctor pointed out that the op. might kill him, the risk was greater because of his other ailments. And there is a risk of death with every general anaesthetic. The medical advice is to not be pursuaded by others, only request it if you are certain it is what you want for own reasons, wishes and beliefs etc. Sound advice indeed! (and good! I'm not totally at war with those, most of whom genuinely care for the right reasons). I still sometimes wonder how much I am indebted to that person who set my dad straight. Thank You, whoever you are!
kidneys are an unusual organ, in that there is two of them. And although at much cost really when you look at it. We only need one. That is because until the kidneys cleaning the blood goes below 40% we don't need much treatment, we tend to start needing dialysis thereafter. With one kidney in a person starts at approximately 50%. This can go down, I would say it is always better to have a back up.
Thus to give this, something you may need if something happens later on to some-one who cannot possibly give it the same lifespan, or enjoy it to the same quality. The best case scenario is 25 years but this requires constant monitoring, and is still quite rare by comparison to the ones 'still working after one year' but not much after that. There's no escape from sitting in hospital waiting rooms, waiting to be lectured by doctors who constantly seem to get younger. My friend says that for his set up -despite the success on paper- the doctors seem to be running out of answers, and they're "wobbling abit". The organ seems to be on its last legs. I wish them well. The doctors say it is only really a holiday from dialysis, and as the organ cannot be given back to its rightful owner. My stance is no thank you!
One doctor said "we're always coming up with new pills, there are alternative immuno-suppressants." My mind went straight to my favourite film "The Fugitive, Harrison Ford" where the conglomorate company in its rush to pass a new drug got murderous. And the police in their predjudice and steadfast belief in the complete and utterly misleading myth that 'doctors, nurses must be saints' were so blinded to what was happening, this coupled with their belief that a cop from their own department could do no wrong, and their blind assumptions that 'if in doubt blame the partner, and make it stick.' framed the wrong guy who then had a fight on to clear his name.
Add to this "Harvesting", where in this sense a person may be killed in order to provide for said money making scheme of job creation. ...Anyway, I'm not trying to scare those who want it off, I'm just sick of people with their common sales pitches trying to paint a halo around something where it most certainly should not be! I know for a fact that I would be mortified if I learned of any specific case, let alone if I had benefitted from it.
They say family makes the best match... I would rather have my family continuing to benefit from as full a health as possible rather than use them to selfishly cling to staying around a bit longer, when they might not. Besides, I rather like the thought of those that would grieve for me saying, despite himself facing death he was able to put himself last and think of us. I have always seen the wider picture, and in their grief; the more nice things they have to say about me that will serve to ease their grief and the more love I/we will feel. -Better in death as it is something I haven't felt much of for a long time in life!
So, I have been working with the waning health I have to do those nice things they will be able to remember me for. But the right to end treatment, and free from argument, manipulations and inquisitions questioning my sanity. Anddoctors seem to feel they've got free reign over a patient, though tis is actually an erosion of boundaries, as well as an infringement on a patients human rights, freedom et. After all if I did go insane I would have even less to live for!!! I value my freedom and Independence in the utmost! While doctors seem to care less about locking some-one away somewhere... My friends and relatives cannot really contact me there either, and 'I'/the patient is probably more likely to end up losing their mind in sucha place. Even if all staff could be trusted to treat people well, with nothing underhand going hidden, other inmates can't. So, I rather be at home, in heaven with God than in some prision -a hell hole of mankinds creation!!!
I do have more reasons. Immuno Suppressants would in fact make me ill alot. I know this as I've spoken to patients who've had one. And "You go down with everything". I was away from school alot with illnesses and the nastiness I got from teachers and students accussing me of skiving... They even got the schoolboard man out at one point. Imagine this where there's money concerned. Employers wouldn't want to employ me, while benefits would be stopped, so I would have endless forms to fill in which I hate! And not be guaranteed payment. I know this because as a Youth trainee, the director gave me an extension so as to finish my work. This turns out pointless because the conditions didn't change and the whole thing was very badly set up. So two days before I was due to leave, I was sacked for being late so I went weeks on weeks without full money, mother threatening to throw me out if I didn't pay board ..and all the stress and bad temper, anxiety etc. that goes with it!
Stories I here from reliable resources, tend to be gossip by other patients and even the odd driver as others are bound to secrecy. One that sticks in mind is a woman got a kidney from a deseased man who had a strain of flu that she'd never had, and because of the immuno suppresants (required to dumb the persons system from shutting down the foreign object that is said kidney) they had to remove it!
I have heard many things like this. There is it seems discordance among doctors, depending on the departments as to whether Steriods they use/d in the process actually cause deafness, though the patient who informed me said that the unit she goes to is full of people in the same boat as her!
After hearing all this, and reading revelation in the bible. I decided that undergoing such things is probably considerable as the mark of the beast somehow. This is just my suspicion in an attempt to work things out, being a far greater story which I probably won't blog or be able to in full anyway! Good Luck, whatever you decide is right for you.