Newbie from the Philippines

[X3nt]

Hello. I am Vincent or X3nt.

I am 33 yrs old. Married. No kids. And I work as for a US based Software Company as a Support Analyst/Engineer

I got diagnosed with pkd when I was 21. Got it from my dad. Earlier, I battled tedious fight with Kidney Stones. Now, my Kidneys are completely shutting down.

Currently my eGFR is 7.7 and my Crea is 21.1. I am itching all over. Red bumps appearing all over mg body. Cuts bleeding from scratching. I cant help myself...

I also can't sleep and i am always restless. Cant even sit still for a haircut. I feel miserable and depressed.

Honestly, I am losing hope. My doctors want me to go on dialysis but I am trying to prolong my life without it. My father died just after 1 yr of dialysis. Anuerism. Now I am scared.

I have 2 willing donors. A cousin and my wife but they don't match my blood type.
There is no Exchange Program here. This Country is pathetic. I do not have the money to go abroad and do my transplant there. I am pathetic.

Thanks for reading. Please pray for me. I will do the same to you.

God bless us all

-Vincent "X3nt"

[X3nt]

By the way, my blood type is "O". Cousin is "B" if anyone is willing to do an exchange.

[iolaire]

Welcome to the group. Try not to fear dialysis too much as it might make you feel much better.

[Simon Dog]

It is possible to have a good life while on dialysis.   I have been proving that to myself every day for the past 6 years.   

[X3nt]

It is possible to have a good life while on dialysis.   I have been proving that to myself every day for the past 6 years.

Thank you. This means a lot to me. I am just looking for people like me who's undergoing the same s#it as I am.

[lulu836]

It is possible to have a good life while on dialysis.

Why does doom and gloom prevail when someone is diagnosed with ESRD?  The initials don't really describe the condition.  It's not like a pronouncement of impending death. End Stage means there are no more steps until failure.  Your're there already.  It does not carry with it the prognosis of 1 week to live.  I've been on dialysis for a couple of years..........it just is not that bad. 

If you are a care partner it is up to you to maintain "the happy".  Your patient needs to see "the happy" and feel "the happy" for encouragement.  What's the point of both people being down in the mouth and mopey?  Care givers need a day off every once in a while from  their patient.   That day will always bring a new, fresh, better (happy) outlook for both.

I don't like dialysis.  I don't want to go to dialysis. I don't want to "feed the vampire" and then have the nutritionist yell at me because I am .2 over on phosphorus.  I don't want to have to plan a trip around my dialysis schedule.  I don't want to get out of my warm bed to go to the clinic when the weather is bad........or hot.....or muggy......or any other thing but sunny and warm (then I REALLY don't want to go, LOL).  However, I am VERY glad dialysis exists since a lot of us here present would not be so in that OTHER circumstance.

So how about it peeps?  Can I see a smile  every once in a while?

[X3nt]

Thank you lulu836! That sure is uplifting! You see.. I used to be an athlete. A basketball player. A jock. I used score tons of points and the ladies would cheer for me. I used to go to bars and drink a couple of beers and smile once in awhile. I used to go on vacations, eat BBQ, swim in the ocean. Bask in the sunlight. Shop til I drop. Roam the malls. I was living the life. I recently got married, about 2 yrs ago. I told myself I would settle down. Start a family. And this thing happened. I cried. By my self. I dont want my wife to see me cry. I want her to think that I am strong. We are just starting our lives. Now this. And I am not sure if I would ever get a new kidney. I envy you guys. You're lucky you're in the US or the UK.

[lulu836]

Re-read my post.  If your reply was authentic then just keep reading it until you get it".  If it was insincere and sarcastic then nevermind.  While not curable, ESRD is highly manageable.  How you view your future is a big part of feeling better everyday.

[Paul]

 
Hello Vincent, welcome to the site.

Honestly, I am losing hope. My doctors want me to go on dialysis but I am trying to prolong my life without it. My father died just after 1 yr of dialysis. Anuerism. Now I am scared.

You will live longer on dialysis than not on dialysis. Don't let the fact that your father died put you off. Loads of people die in car/bus crashes, but does that make you walk everywhere? People die from food poisoning, but does that stop you eating? Dialysis will keep you alive longer than not going on dialysis, and saying "I am trying to prolong my life without it." is like saying "I am trying to prolong my life without eating food" - not gonna happen. Please, for your sake, rethink. It is, of course, your choice - but be aware that if you continue to refuse dialysis, you are committing suicide, your father would not want that.

Yes, dialysis is scary, but so is life. Please, at least try dialysis for a while before deciding if you want to kill yourself by refusing treatment, it is not as bad as you think it is.

You say "I used to go to bars and drink a couple of beers and smile once in awhile. I used to go on vacations, eat BBQ, swim in the ocean. Bask in the sunlight. Shop til I drop. Roam the malls. I was living the life.", with the exception of the fact that you have to watch how much you drink, you can still do all that on hemodialysis (and all that except swim in the sea on peritonealdialysis). And as to "I told myself I would settle down. Start a family." that too you can do on dialysis (although if you continue to refuse dialysis, your "ability to perform" will probably drop too low, and anyway, without dialysis you will be dead before the child is born). You are depressed at the moment. THAT IS NOT A GOOD TIME TO MAKE DECISIONS. Think about the good things in life. Try a couple of months on dialysis before deciding. Remember, you can stop treatment at any time you want, it is always your choice, your decision. But please do not let your father's sad fate cloud your judgement. Without dialysis you will not even live as long as your father. Please try it, see how much better you feel in a few months, then decide.

[Charlie B53]

I much rather go to Dialysis than to just give up and die far earlier.

Fear of the unknown is very strong and can cause many to make wrong decisions.

Dialysis does cause you to make some changes in your life, like paying far more attention to eating much healthier than you may have been doing.  Those on Hemo pay more attention to their fluid intake, while those doing Home PD have much more freedom with their fluids.

Once past those initial 'fears' Dialysis really is a no brainer for anyone that isn't willing to die just yet.

Many of us tend to think of Dialysis as a part time job.  The pay sucks, there isn't any, unless you can put a value on life.

Oh, Welcome to IHD.  You have come to the right place to vent your anger and frustrations of dealing with kidney failure.  We've all been there, and learned there are better ways to manage living.  The first rule, NEVER just give up.  You can manage.  It just takes a bit of adjustment and determination.  And I'll bet you can do that!

Take Care,

Charlie B53

[LorinnPKD]

Hello fellow PKD'er!

I started dialysis at 40 with a GFR of 6 and I was feeling pretty awful by then.  The time right before starting treatment was so much harder for me than actually being on dialysis.  I'd put it off as long as I could because I didn't want to do it, but it really did help.

PKD ESRD can be a little different from some other forms of ESRD in that I didn't have any fluid buildup or sky-high potassium labs.  I kept telling myself, when I start putting on fluid, I'll start.  But that never happened and I needed treatment just the same.

I was so weak and breathless, and oh man, the nausea!  Weird sleeplessness paired with this desperate fatigue.  I had restless legs, too, but I think that was the anemia because that's gone away.  No itching, but I was already taking phosphorus binders by then.

Long story short, dialysis is not ideal but I felt so much better than I did in the weeks and months dreading the start of it.  I wish I'd started sooner.

Sending you good wishes and strength from the US.

[cassandra]

Welcome to the site Vincent


   


I'm sorry to read about your dad, and I understand you are scared. But I've been doing this for 20+ years
And I'm having a life. No atlethics for me anymore, but I am getting grey hair (all 48 of them) which means I did enjoy the chance to get old. Dialysis is not the most fantastic way of living life, but it's a hell of a lot better than being dead or having an incredible amount of other 'life changing' illnesses.

I wish you wisdom, Cas

[X3nt]

Thank you everyone. Just to set the record straight. I am not suicidal. I want to live still. I am just scared of the effects of dialysis. I am scared of the needle pricking my skin. I dont want to have dark skin. The things people will say once i start losing weight. But thank you. This gave me a new insight regarding life on dialysis. I may start this Monday. Question though. Is it true that I need to be confined for the first session? My neph said they will admit me for 3 days so they can observe me

[iolaire]

Question though. Is it true that I need to be confined for the first session? My neph said they will admit me for 3 days so they can observe me

Do you have a fistula installed for hemodialysis?  If not they probably need to put in a catheter to perform the dialysis through.  That might require time in hospital.  Someone who has experienced that should be albe to give more details.  It would be ok to be in a hospital as they learn how you respond to the treatment.

I had a fistula installed via out patient surgery a few years prior to starting dialysis so the used that. But I was in rtge hospital for another reason when I started dialysis and received good introduction to the process as the hospital nurses had more one on one time with me than I would have received in the clinic.

Good luck, I hope you respond well and make the transition to dialysis as smooth as possible.

Also I wanted to say in my clinic there were nurses and techs from the Philippines. I hope you receive the same good care that they provide here. 

[Simon Dog]

What makes you think you will lose weight?   I've gained a few too many Kg since starting D 6 years ago.

[lulu836]

I've lost 35 pounds in two years.  A lot of it from stress (which also accounts for hair loss), cutting out my favorite foods and a conscious decision to push away from the table instead of taking that second helping. 

[LorinnPKD]

I'm not sure about if things are different in the Philippines.  Here in the US, you don't have to be hospitalized for your first session. Everybody's different, but I felt better after my first session than before it because of the toxic buildup and because it was good to have all that anticipatory stress behind me.

I remember calling my mom and insisting that we go out for breakfast after because I was finally hungry after months of having very little appetite at all.

[Simon Dog]

I've lost 35 pounds in two years.  A lot of it from stress (which also accounts for hair loss), cutting out my favorite foods and a conscious decision to push away from the table instead of taking that second helping.

I wish I could give you a few of my lbs.

[Paul]

Is it true that I need to be confined for the first session? My neph said they will admit me for 3 days so they can observe me

It is not a necessity, and three days seems excessive, but it is better if you are in hospital for the first session. For me they only kept us in for an evening, but kept that up for several weeks.

What iolaire said is true, but again three days seems excessive. I was kept in only half a day for the cannula, and a day and a night for the fistula (that should have only been a day, but I took longer than usual to stop bleeding, so they kept me in overnight for observation). Incidentally you don't necessarily need both, circumstances contrived to make it necessary for me.

The three days may possibly be that they are being extra cautious with you as you are so nervous about it. A scared patient is a harder person to treat than a blasé one!

[Paul]

The things people will say once i start losing weight.

The weight loss is in stored water, not fat and is only noticeable in your legs. Some people might see it if you mostly wear shorts, but most won't, because people tend to look at the face and stomach when judging size, and that won't change.

Well, that is unless you are very fat from eating very excessively, although you can have a decent sized meal on dialysis, eating half a cow with a side of pig and a few chickens to garnish, is out.

[X3nt]

My neph said the first session would only be 2 hours. 2nd day will be 3 and the 3rd day the full blown 4 hours. All that with me being admitted for observation.

[X3nt]

Another damn sleepless night. It's not the PKD that's killing me. It is the RLS. Any tips on how to deal with this damn RLS thing?

[cassandra]

Hi X3nt ask for Diazepam. Stops RLS (why they keep saying 'Restless leg syndrome' while it's 'restless whole body, from the neck down' syndrome. It works and lets you sleep when you want to sleep.
Yes it's apparently addictive. I've been taking the same dose since '98, and have yet to discover a negative side effect.


Love, luck and strength, Cas

[Charlie B53]

I have always been quite 'needle-phobic'.  In my younger years it was quite common for me to instantly take a nap when I saw ANY needle headed my direction.  I'd get woozy simply smelling the alcohol wipe.

While I haven't passed out in maybe 30 years, my blood pressure still climbs remarkably.  Dr's are often warning me I could easily have a stroke.

Dr has written me a script for a generic form of Zanax.  I take one pill Dialysis days just before heading into the clinic.  My BP is nearly normal.

[LorinnPKD]

The RLS was bad for me!  I think it was the anemia.  Once they started treating that, the RLS stopped!

For now, if you take a hot shower or bath, it should calm things.

And for the needles, I use a freeze spray (although other states I've visited don't use it!) and others use a lidocaine cream about an hour before treatment.  I never liked the lidocaine, though.  I've had to go without when traveling and the stick itself wasn't too bad.