I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: X3nt on April 11, 2018, 05:46:59 PM
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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"
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By the way, my blood type is "O". Cousin is "B" if anyone is willing to do an exchange.
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Welcome to the group. Try not to fear dialysis too much as it might make you feel much better.
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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.
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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.
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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 :2thumbsup; every once in a while?
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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.
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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.
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:welcomesign;
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.
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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
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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.
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Welcome to the site Vincent
:welcomesign;
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
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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
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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.
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What makes you think you will lose weight? I've gained a few too many Kg since starting D 6 years ago.
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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.
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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.
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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.
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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!
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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.
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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.
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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?
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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
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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.
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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.
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Thanks everyone! I love this forum! There is a sense of "Community" here.
I already have a fistula on my right arm. I got it last September. My eGFR then was 15.
Hello fellow PKDer! Any plans of getting a transplant? They said we are good candidates... Less complications my neph said...
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Hello PKD'er!
Yeah, my transplant assessment went really well and the transplant people said I'm fortunately otherwise healthy and potentially a very good candidate for transplant. Although my kidneys are enormous (both are football sized and I'm 5'5") and if I did find a match, they'd either have to remove them or take a chunk of one off (ouch!) so they could wedge the new one in there somewhere.
Not everyone gets huge PKD kidneys, though. I'll take them both out eventually, perhaps in the next year or so because they're causing some considerable back pain and I'm pretty uncomfortable. But right now they're still working partially and I am grateful for the remaining degree of normalcy they still provide. I still have some fluid function and lots of potassium function, so that means fewer dietary restrictions for now. That seems to be the silver lining of PKD -- even though you have to have dialysis, function seems to fail in phases so you can settle into the whole ESRD thing a little more gradually.
PKD is so weird!
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Hello,
I wanted to give everyone an update on my status
1.) I am still not undergoing dialysis. I can still take it. I still pee. Not bloated. I am Itchy but manageable. I am taking Renvella 3x a day. That helps a lot
2.) Tramadol seem to ease my RLS. I also bought an electric massager. it eases the pain a bit
3.) My Pruritus seem worsening. It's on my scalp and face now.
4.) I developed a fear of holes. I am EXTREMELY Trypophobic now. I used to watch pimple popping videos on YT. But now, everytime I see a hole/group of holes, I feel itchy. Your shoes have holes for ventilation ie (airmax 270) I automatically scratch my back or arm. Anyone else have this?
5.) I am surprised at how many people are willing to sell their kidneys here in Manila
6.) I have a potential donor. My cousin. She's type O as well. It gives me hope.
Have a great day everyone!
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Hi Vincent, so glad to see an update from you!
So this is important: With PKD, the ability to pee has very little to do with your remaining function. Seriously -- I was down to 6% GFR and my neph was threatening to strap me down on a hospital gurney and dialyze me right then and there and I was like, Relax! I'm still peeing! I feel fine! I'm perfectly fine! (I was not perfectly fine!)
But PKD makes the kidneys fail in stages. You may be peeing lots of fluid, but your kidneys aren't getting rid of the toxic stuff properly. (My first renal dietitian called it "discount pee" because it looked the same and was the same volume but it was poor quality pee.) I've been on dialysis two years now and I'm still peeing, though now a little less than before.
So Stage 5 looks a little different for us. Here's how I felt when it was time to start dialysis:
- I was sleeping all the time
- I was barfing all the time - brushing my teeth made me gag
- I could barely eat
- I was getting pretty weak
- Climbing a flight of stairs took some real preparation and determination
- I was having trouble concentrating and remembering things
- I had restless legs, like they had minds of their own and wanted to party all night
- But I was still peeing like a champ!
What's your GFR these days? It's somewhat subjective but PKD is so deceptive because our ESRD symptoms are different from many other patients.
(And congrats on the potential donor!)
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- I was sleeping all the time ( My sleep pattern depends on how tired I am)
- I was barfing all the time - brushing my teeth made me gag ( Nope, I don't have this)
- I could barely eat (I am eating OK, so no)
- I was getting pretty weak (Occasionally but not all the time)
- Climbing a flight of stairs took some real preparation and determination (So far so good for me)
- I was having trouble concentrating and remembering things (I still work my IT job so I guess no)
- I had restless legs, like they had minds of their own and wanted to party all night (Now this I have)
- But I was still peeing like a champ! (Me too! :2thumbsup;)
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I've been on Dialysis 5 years already.
Still tired all the time.
Won't go downstairs to the basement as stairs are a whipping.
I don't get sick. Fortunately.
But I'm rarely hungry enough to cook a whole meal. I will toss a pot pie into the microwave.
Sleep way too much. Regular naps two, sometimes three a day.
Don't think I have RLS, I am easily able to fall asleep. I use a CPAP.
I hope your Tx comes soon and all goes well for you both.
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Thank you!
Well... Last Sunday, I woke up and felt like I was dying. I can't feel both my legs and I was having difficulty breathing.
I was rushed to the hospital and lab results showed my Crea was through the roof. The others were normal like Sodium, Phosphorus etc.
I started dialysis last Monday. The first session was 2 hours. Then Wednesday, it was 3 hours. It was OK. I was bored and my legs were RLS'ing but over all it was ok
My next dialysis would be this Saturday then Wednesday. 2x a week.
During my 2nd session. The tube clotted, is that normal? It was the tube the brings the blood back.
Also, I am bruising. the part where the fistula is, it's all bruised! Is that ok?
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I hope the transition to dialysis continues to go well for you. I hope the RLS will also decrease as your blood gets cleaner.
The tubes do clot a times, they might use heparin to help thin your blood a bit so that doesn't happen.
I don't know for sure about the bruising but I would think it could be normal as either blood is spilled from the vein when the vein is punctured as the person doing the needles miss the vein, or just the pressure on the vein from returned blood is causing some leakage from the vein. Whenever I've gone for angioplasty where they use a balloon to open the vein where its thinning I get a huge amount of bruising that last for about two weeks. Also that bruising can move under the skin, so it starts by the vein but by the end its no where near the vein.
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Hey there -- and wow! That happened so quickly. I'm so glad you're OK!
I had some pretty dramatic clotting. The tube got all clumpy and looked like something out of a monster movie. My neph ordered heparin and it's been smooth sailing since.
And I had some pretty dramatic bruising as well as my fistula was developing, and a few infiltrations! It was pretty colorful for the first two months or so and occasionally for the first six months. I'd go home and ice it down. For really bad infiltrations we'd have to skip a day. It all improved with time.
My clinic has internet so I bring a tablet (I strap it to the TV stand!) and watch movies. I get so bored watching the clinic TV so having my own setup is a lot nicer.
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Today was my 4th Dialysis and I experienced my first cramps and boy was it NASTY!
Aside from cramps, I also felt lightheaded at the same time. Nothing a salty treat won't fix though
I am still bruising... My veins are still small so the nurses are still having a hard time locating it...
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I am still bruising... My veins are still small so the nurses are still having a hard time locating it...
Have you considered learning how to self cannulate - i.e. stick yourself? Some people swear but it and it gives them a lot of control. Usually people who self cannulate use button hole's so that means you build a good access site that you use again and again, so you are not trying to find the vein each time.
I'd think that it would be easiest to learn before you slip into the routine of letting the nurses do it. At my clinic they didn't really teach it but some tech's would help patents learn if they wanted to. A lot of times when I traveled the nurses at the destination would tell me that I should learn to do it to help protect my fistula.
Figure out your dry weight, if you are cramping they might be taking off too much liquid.
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Yeah, if you're still peeing, your dry weight may be a moving target.
For me, we didn't take any fluid off for the first 17 months I was on hemo. And then we started taking a little, and six months later the rest of my kidney function is going pfffft in slow motion so we take off about a kilo plus each time lately. There's really only been once or twice in two years that I came off lightheaded.
If you're peeing still, this is definitely worth a discussion with your neph. You shouldn't be lightheaded when you come off. How is your blood pressure during treatment? Are you reclined during treatment? (I ask this because I sat up straight with my legs down to be more comfortable one time and very nearly fainted.)