I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Nathan on September 15, 2017, 09:54:34 PM
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Hello everyone that has made this site so helpful and beacon of reality since I was first diagnosed. For anyone not interested in reading another sad story and I'll warn that this story is ongoing and I'm still new to this sorry. Before I begin spilling my guts out onto the forum I have to repeat thank you all for existing, being stronger than I may ever be and even if your just normal people in life, you've all been my heroes for the last 11 months.
I'm 26 diagnosed ERSD Nov. 11 2016, i just turned 26 8/25 and still I'm trying to piece all this together into something I can cope with but I'm trying not to overburden my family who are going through their own versions of hell right now. Here is how I ended up coming to know the fine people IHD.
I'm 25, about to go to work but I've been feeling very lousy for the last couple of weeks and its got worse in the last couple of days, so I decide I'll call in sick(something I never do, bosses love me cause I'm never sick and always on time). No big deal I go down to the ER hoping it's something moderate like a bad gut infection or made just a really bad ulcer but nothing life ending. I show with a headache, vomiting and just feel like death, nurse takes my BP 240/140. She gives me this look like I did something and puts the cuff on the other arm still 240/140 then she looks at the machine like its broke and tries the first arm again with the same results. Finally she pulls out the manual cuff and and the stethoscope to check it herself and as soon and she if done I get stood up and led into the back. That when the tests that never end first begin, and all of them at that hospital came back that it was a some sort of internal bleeding because of the symptoms and anemia and the got an ambulance to send me to another hospital where I could be looked after because this one was a learning hospital. At this point I was stubbornly coherent but not really receptive for the next 3 days all I remember doing is sleeping and vomiting and sleeping and vomiting then surgeries then vomiting then sleeping then vomiting and between all that drugs through an IV and blood draws for tests. It was Friday when I went in the next thing I remember is waking up Monday around noon asking if I was allowed to eat, because I was on a liquid diet til the ruled out internal bleeding, surround by my family, my brother and mom live in state but my dad lives all the way across the country all 3000 miles of this beautiful land. I don't remember my first day of dialysis just woke with a chest catheter and with all the facts that come next because I wasn't really there over the weekend but my family filled me in. I walked into the hospital with a gfr of 5, a BP of 240/140, creatinine levels at 56 and was immediately put on dialysis. I was given a diagnosis of 'we don't know' caused by 'we don't know' at 25 years old out of nowhere with a prognosis that transplant is my only real recourse. It has been a hard year since then, In-Center did not do well for my body, the people were good at least most of the Techs and Nurses but the treatment was awful for me so I had to stop working plus I couldn't keep up with a physical job like I had, I've only worked in kitchens since I was 19- 6 years of 40+ hour weeks to earn my strips gone in a weekend. 2 months ago I got on Home HD and love it, finally feel like a human and I appreciate my family being to willing to adapt enough to let that happen. Working with a forearm fistula with my brother canulating, NxStage from Fresinius.
Life has gotten much better since Home dialysis but I still feel totally lost and can't imagine a successful future, I'm very independent and I;m weary of Tx(even though I know I have to) because it feels like organ probation as Home dialysis just feels like a medical condition that needs treatment aside from dialysis times and the diet I pretty much do what I want. ALSO I HATE PREDNISONE AND THEY WANT TO PUSH A GRAM DAY OF SURGERY!!!! When I was first diagnosed they gave me 60 mg and those were the worst side effects I've ever had. Thank you for getting this far and sorry about all the anger I try and steer it away from the family and this seemed a viable option.
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Hi Nathan,,
Welcome to our IHD Family of fellow patients and caregivers. Thankfully you have passed your initial trial by fire. It WAS a difficult beginning. Getting on Home Hemo you have taken full control of your treatment and have already learned many of the most important things.
Diet and fluid control are both very critical to keeping yourself on an even keel. As you continue to push yourself you may find you might regain strength and endurence enough to return to work at least part time. Many of our younger members do, I wish I cold.
I can't tell you anything about Tx as having too many other issues I am not a very good candidate and am not even on any list.
We do have members that have successfully lived many many years doing Home Hemo. It becomes a regular part of your routine, pretty much the same as brushing your teeth. It does take some adjustment and mental conditioning. Ours is not to wonder why. We just have to accept and adapt.
You are doing very well for such a difficult beginning.
Continue to Take Care,
Charlie B53
Sp mod Cas
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Welcome
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Welcome, Nathan. Sorry you have to be here, but happy that we can all be here with you. I know that you are happy with Home Hemo, but there is also home PD which is another option where you can take control of your treatment--without all the needle pokes.
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Hello everyone, thank you all for the welcome!!
I looked into PD but I hated the chest catheter because of the constant tube and I don't mind the needles as much as I would mind not being able to get away from my treatment, at least with hemo it's 3 hours and the rest of the day is all mine. But more power to the people on PD I've heard it works wonders for many people.
Tx is something I'm interested in just if I had to be honest, it's not a cure, I will end up on D again at some point and the anti-rejection drugs scare me to death. I trade off cardiac issues for cancer and an even more suppressed immune system( I was a cook for many years and love food and Tx team said I have to risk the graft for a med-rare steak or over-easy eggs, let alone sushi)
The worst part of this is trying to find my own reason to struggle on and I sympathize with those that don't know how long they can do this, i mean this is it this is all my life has come to by 25 and it feels like if it's not worth it. I was working toward retirement someday-gone, why get married or have kids when you can't guarantee you'll be stable and productive for them. KickingandScreaming hit too close to home for me when you talk about your old dog being your main motivation and I'm sorry how things are going and hope to see you doing better soon.
Truly thank you all, Charlie, Rerun, Casandra, KickingandScreaming, iolare, Simon Dog and okarol as well as Epoman for creating a place for people to be honest about all of this. My family thanks you all as well because if it wasn't for all of you and this place still being around I don't think I could have made it this far.
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Welcome to the group. Glad that home hd is working for you and that you found it.
Re transplant I think some of the food restrictions are more flexible especially if you can control the quality and preparation of the food. My first trip after my July transplant will be Japan at four months out and my transplant surgeon told me regardless of what others will say I'm good to have sushi well there. So I think a lot of those restrictions are generic but flexible. So don't be eating budget sushi buffets that sit out all day, but maybe an occasional sushi from a clean restaurant might be ok.
I guess what I'm trying to say is the transplant teams have people's whose job it is to have very generic rules that apply to all people, but by education you might be find some of those rules relate to risks which can be minimized. The dialysis center have similar rules for example diet but those diets are not really one size fits all.
I received prednisone after my transplant but my center also offer prednisone free transplants so there are options with the transplant.
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Welcome to the site Nathan
:welcomesign;
My battery is running 2% now so I'll 'persuade' you into at least thinking about a transplant another time ;D
Take care, Cas
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Welcome to the site, Nathan. Don't sell yourself short. My husband is 59, diabetic and has been on dialysis 3 years. He goes to dialysis 3 times a week, works a full time job that is fairly physical and then to top it off, has to come home to ME, which I KNOW cannot be easy. lol Seriously tho, he has THE BEST "can do" attitude I've seen in anybody. I'm the one that often has a defeatist attitude, not him and he's the one with kidney failure. Don't rely too much on other people to do things that you can do for yourself. Test yourself...your strength, your willpower, your courage. No energy? Rest then get back to the business of living. Attitude counts for a lot. Good luck.
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Nathan. 26 is to young for this crap. There is a huge effort to fix this problem. Currently research in creating a medical fix is progressing. A Implantable Artificial Kidney. The various approaches are getting close. Think of dialysis as a bridge to the future.
Try googling Implantable Artificial Kidney. You will be impressed by the amount of effort being put into Kidney research.
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Hi, Nathan. I was able to avoid dialysis (just a stroke of luck) and had a cadaveric transplant 5 years ago, so with that in mind, I'd like to offer a few reassurances about transplant.
But before I do, I am glad you've joined and that you've elected to do home hemo. That goes a long way towards grabbing back some control over what often feels like an uncontrollable situation.
I am assuming that your docs put you on 60 mg of prednisone as an emergency measure. After tx, I was put on 30 and was quickly weaned down to 5, which is where I still am today. I've not had any problems.
About being immunosuppressed, the only food item I've had problems with was some salsa that apparently was not clean. Ugh. I've not had so much as a cold since being on these meds. Like other tx patients, I have labs done each month which measure, among other things, my white blood cell count. All of my "...phils" are and have been within normal range, so I'm rather unclear about just how immunosuppressed we are.
It is true that we have to be more vigilant when it comes to certain cancers (particularly skin cancer), but I don't find putting on sunscreen to be that onerous.
No one can make you have a transplant, so for now perhaps you can just reflect on things.
Did you really have a creatinine level of 56? Did I read that correctly?
We're here to help and support you, as well as to inform you. Use us.
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Thank you all for being so responsive. Sorry if I'm kinda negative I'm more positive in real life just kinda need to get it off my chest, I'm the pillar of stoicism, grit my teeth and bear it type but this whole thing is a little unbearable. I don't like to and never have been in the habit of putting my weight on others but need somewhere to vent and you guys always seem willing to help and maybe when I get my head together I'll be able to help someone else in this struggle.
I know transplant is the best option and I'm moving towards it, especially with my age and eligibility plus I've got multiple live donors in my family throwing themselves at me and mad at me for not moving on this quicker. I just know myself well enough to know I'm not quite ready to be responsible for someone else's organ and the way most non-recipients speak about transplant it's this miracle that will give you your life back when from what I can see as a 26 year old I get a very restricted life while losing my disability, I'm only high school educated my mother(who I live with and she works but shouldn't be this burdened this late in life) is getting older and my brother(who is my home tech) is unemployed and a 2 times felon with no licence. I used to hold my own plus provide for the family and now sometimes I get dizzy when I stand up or bend over. I'm single, childless, and unsure of what motivation I have to do all this, I'm not gonna say my life was so hard but I've never been very good at this living thing anyways and now I have to find a reason to wake up in the morning and just keep drawing a blank.
Sorry for being so negative I know you guys have a great attitude about this most times, I'm just venting a lot because I try and keep a lot of this off my family they are good people and don't deserve me screaming at them because that's the only tone any of this comes out in. I haven't given up, I don't skip or cut short treatments, my numbers are good except my Phos can be high sometimes 5.0-5.5 and got to 7.1 when the clinic forgot my Renvela script, only put on .5-1.5 between and creatinine is down to 6.78.
MooseMom- It's great to hear you avoided dialysis hope it never comes down to it but if it does you sound tough enough to work the machine not let the machine work you and yes 56 or i think some countries leave out the decimal so it would be 5600 my Neph looked at me in disbelief when he heard I walked into the hospital and sent my brother home thinking it was no big deal. I was more impressed that my BP hit 240/140 without giving my stroke or aneurysm, my blood vessel are bulletproof.
Everyone- Also thank you all for being willing to speak about all of this it's true community service. Every one of you has in some way made my life over the last year better and this is the first time I've been able to say it and hope you all see it. I found this site the 2nd day I was awake in the hospital and unlike the other sites this one puts a very human face on this condition which I needed badly after only having a medical text book read to be by every professional person and credible website I could find. You guys informed on how every part of life will be affected by this and how real people handle this issues, doing so with positivity and grace is something I see a lot on this site and hope some rubs off on me. Without this site I never would have gone on HHD or known how or been informed enough to stand up to my nurses and tech about how I NEED my treatment to go so I feel good and healthy, don't cramp and don't feel hollow the rest of the day.
Prednisone was 80 mg down to 5 over 3 months then none. In the higher doses I would go through killer mood swing like a bipolar teenager on HGH and Bull Testosterone. I would eat everything all day and nothing could stop me, just snacking alone I ate a box of vanilla wafers a day, the body acne was so bad it went down to my forearms and all over my chest and back, and then the insomnia that kept me awake but went away when I changed dose time to 2 in the morn one at noon none with dinner after a doc told me it was ok. I HATE PREDNISONE. When they said it was one of the main 3 of the cocktail I broke a little inside. I'll look into the Prednisoneless transplant option, I don't know if all that is normal prednisone behavioral but it was like riding a roller coaster I had no control over for me til I hit under 20 a dose then it was just awful body acne itchy itchy body acne.
Artificial Kidneys are my brother biggest hope he doesn't live longer than his little brother
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O Nathan I recognise your 'pretty spot on' description of going through a period of high Prednison very well.
But after a transplant it's not that high, nor that long plus there's a lot of possitives like no dialysis, feeling 'normal', being able to function like a (dare I say) 'normal' person.
I was 18 when 'they' removed my kidneys, and 20 when I received my dad's. I went back to Uni, married, divorced, worked in upteen jobs, got married to my wonderful husband, owned a pub, and emigrated in the 13 years I had that kidney.
So just keep venting here, and when you're ready grap those family members and I hope there'll be a match.
I'm very glad you are on home hemo, after PD (personal opinion) the best place to be.
I also wanted to say that you are very most likely very angry about this nonsense D, as I was at your age. And than I woke up and realised how much time and energy I was wasting.
Have you thought of picking up a study?
Lots of love, luck and strength, Cas
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Nathan, I don't want to hear any more apologies from you, OK? :P
Proper, effective "venting" is an art form, and hearing it is what we are here for, so no apologies are required!
When I first came home with a shedload of new pills to start taking after having my neph tell me that he had "no hope for those kidneys", I was sitting at the dining room table filling my spanking brand new massive pill box. I was so distraught at the whole idea of staring into the black abyss of impending kidney failure that I grabbed that bloody stupid box and threw the entire thing into the wall. And there was so bloody way I was going to apologize for my anger.
I believe that we none of us can get proper support from just one source. It is up to each of us to stich together the most effective support blankie. I'm sure you are getting emotional and some tech support from your family, so take what they can give you. They can give you real love. There is no sin in that. But they do not live with this disease, so come to IHD for support from those who know. Those are already two squares in your support blankie.
Another square is your medical team. Do you trust your doctors? If so, they will be giving you advice that none of the rest of us can supply because we are not licensed physicians.
OK, so you may feel "responsible" for a donor's organ. I think we all feel a bit like that. But it's not some onerous burden. You take your meds exactly as you are supposed to, you attend every appointment, you have labs done each month (or whenever your tx center wants these done), you look after your general health, and you feel gratitude for each day you are given. THAT's how you life up to this "responsibility". Thousands and thousands of us do this, and you can, too. You've said that you don't skip or cut short treatments; this tells us that you have what it takes to live up to the "responsibility" of receiving a donated kidney.
I may have misunderstood, but what I think what I've read from you is that your brother's situation is difficult and your mother is getting older, so it seems to me that getting well and putting yourself in a position of helping to support your family is pretty good motivation to keep going. Describing yourself as being "only" high school educated is selling yourself short. You come across as being articulate and intelligent. If you were not on dialysis, what would you be doing in life? Is there a certain kind of job you'd like to be trained for?
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Wise words, MooseMom.
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Nathan, I reread the intro again and saw the comment about only high school. With a high school diploma. In 1974 I was sent by AT&T to a programming class, became a main frame COBOL programmer. In the next 3 years learned BAL, PlL1, Fortean, and c. I was then sent to Bell Labs as a UNIX admin. With out a degree I was sent as a Resident Visitor. Paid by AT&T but working at the labs. I spent the next 26 years doing admin and systems work all over the US, Mexico, and Japan. After I retired I worked for a Wall Street bank and my last job was with the Federal Reserve. The secret is that when something is established degree requirement are always there, new technology does not have a knowledge base and it is possible to gain knowledge that will last a lifetime. Off hand I can think of solar, electric cars, GEO thermal. Ant new tech. Personally I got over 40'years playing with very big and expensive toys. So don't sell your self short it ain't easy but it's doable.
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Thank you all for the kind words and this is just what I think I need because even if you guys aren't my age right now I've always felt the internet kinda removes some of that distance that exist face to face when it comes to differences. We are all just screen names, icons and the words we use.
I've been thinking about college because I'm a little less worried about going into debt now with The Sword of Democles above my bed take some prereqs and see what might seem workable. I've always liked doing very physical jobs like landscaping, kitchen work, really anything mindless, movement oriented and repetitive but I think desk work might be more viable as I move forward, not that some activity for working is a crazy thought just not the semi-skilled mule work I'm used to.
It is kinda rough not having anyone around that really understands, I'm oddly happy to meet people close to my age in my position. I freaked a girl out I met at the transplant orientation because she was right around my age and I was like a dog meeting another dog for the first time I was so exciting. I wanna find a shrink to go see just to have someone to yell at in person who is just willing to sit and smile, I've just always found it hard to find someone to open up to.
I like my Neph, my HHD nurses, my dietitian's in and out like most others, my social worker is a sweet older woman, the only people I feel more like a piece of paper to is transplant people but I've heard that's normal. For example this was my 2nd or 3rd contact with coordinator.
*My phone rings* Me:Hello
Her: Hello this ___ from ___ did you get my message?
Me: No sorry sometimes my cell phones doesn't do well with messages if I'm out of range.
(This is just the truth MetroPCS is $25 unlimited but has spotty coverage)
Her: Well if I had been calling you with a kidneys we would have moved on you'd be outta luck.
(I'm not on the list, I've barely made contact with these people and have only talked to this person once maybe I'm overreacting a bit but she seemed more like a parole officer calling me with a list demands or I'll be violated)
Now I'm the first person to admit that I'm very independent even to my own detriment at times but outside of the nerdy social worker with harry potter thermos at the transplant center, as well as the lady who drew all the blood labs, I was not a person trying continue to live my life despite this setback, I was a meatsack that was told when and where to hop and if I didn't then I would be considered a blemish to their perfect record and because their mission was so much more important than me that if I didn't appreciate all they were doing for me than I should just turn myself around and leave. They nonchalantly make jokes about how easy I'll be to cut open, or about how I'll have no problem taking more than one transplant in a lifetime just stuff me full i guess, the rhetoric that I'll be dead before 5 years unless I become a successful part of their spreadsheet. Maybe I'm being oversensitive but my main plan was to move out to the middle of nowhere and have as little contact as I could with fast-moving corporate world and right before I had everything in place to do just that all this happens and now I'm attached to either dialysis system or the transplant system and really don't know which one is preferable outside of the health aspects.
I get that transplant is the direction I will be moving into but I kinda feel more comfortable floating here in limbo now that I feel like I'm part of the living again, get my bearings and then jump head first into transplant and the already uncertain future that in front of me? Is this a crazy thought or somewhat reasonable? Only since getting on home hemo has my thoughts turned positive and feel like life is worth all the trouble, In-Center really wasn't good for me, now that I feel better I wanna ride this train for a but before I jump into another potentially year long struggle with transplant/medication side effects. Just as a FYI I left the hospital on 9 different meds 3 of them for blood pressure and through proper living and fighting with my docs and nurses all I take is Renvela daily and a Vit D once a month and I really don't wanna go back to med side effects right away.
Thank you again if you read all that it helps to vent at people that might understand.
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I'm glad you found a place to vent... I think all of us are supportive of your choices even if we offer up suggestions immediately...
I'll have no problem taking more than one transplant in a lifetime just stuff me full i guess, the rhetoric that I'll be dead before 5 years unless I become a successful part of their spreadsheet.
I really take issue with the statistics on death (both transplant and dialysis). Those statics are completely biased towards people who already have low life expectancies. As you will find on this forum and from reading dialysis/transplant success stories in the news area there are people who live for MANY years on both dialysis and transplant. I honestly believe the people who are able to become relatively healthy, compliant and live lifestyles that will help maintain their life have much better odds than those death statistics you will read.
I assume you are on SSI or SSDI? Have you investigated any educational assistance available? I don't know for sure but I'd expect that you could leverage some SSI/SSDI program and maybe combine that with needs based programs at a college or community college to start getting some courses under your belt without drowning yourself in debt. Also your state might have some sort of Vocational Rehabilitation department that might have resources to help with education (they want to get you to a point were you can work with your disability).
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Dear Nathan, most of us really, really get you. Can you now take a deep breath and give yourself a break please. Your whole 'expected to have a normal life' thought has been taken away from you. Just like that. It doesn't mean it's the end of your world, just a bit more difficult and different, but still your world. It would take anyone (well, it took me) an awful lot longer than a year to adjust to that.
Nb I'd love to have seen the 'near your age girl's face when you came sniffing her ;D
Anyhow, keep thinking about a course you would like to follow and Iolaires tips, and check if there's any patient support groups in your area.
It sounds like you got at least some likeable people around you in the hosp, and your head screwed on.
Lots of love, luck and strength, Cas
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I wish I had only 9 different types of meds. (16, plus the 2 I take at the Clinic).
A short course in Psychology would explain all the levels of emotion everyone goes through with a major life change such as a bad diagnosis. You are still stuck in the Anger phase. This to Shall Pass. The Anger, not the Dialysis, that's here to stay. But there is an Acceptance and Healing, Mentally, and getting one living a somewhat altered existence. Living with Dialysis IS an adjustment. Both Physically and Mentally. Thousands have done this, and sadly, many thousands will yet. Some find it a far easier task than some others. It is learning how to adapt and cope.
Sharing your feeling here is a great first step in finding out how to cope a bit easier. It WILL get easier. Just maybe not yet today, but it will get easier.
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Once saw a shrink because everyone thought I should be doing something more productive with my life. Drove me nuts, everyone pulling me by both arms in all directions. I was happy doing what I was doing at the time, had no big plans for the future just yet. The shrink said I was probably one of the most sane people she had spoken to. She suggested that if/when the time for a change came, I would know it. Until then, I was happy doing what I was doing so just told everybody to buzz off. It was liberating to not be in rush to do "the right thing" just because everyone else thought I should. Only do what you want and when you want. Don't pass up the pleasure you can experiance today for pleasure than may or may not be attainable tomorrow. Even if you do only one thing each day, count it as success. Hey, it's better than the alternative and being all down and depressed or 6 feet under. So, just one thing at a time to focus on and explore and to enjoy. When your ready to move on to something else, you'll know it. Good luck. Enjoy life -on YOUR terms. Make it as easy as possible to reach a goal of your own choosing.
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And then there is this very lovely very energetic young lady...Maddy Warren! :clap;
https://youtu.be/wxhbkn4H02U
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Once saw a shrink because everyone thought I should be doing something more productive with my life. Drove me nuts, everyone pulling me by both arms in all directions. I was happy doing what I was doing at the time, had no big plans for the future just yet. The shrink said I was probably one of the most sane people she had spoken to. She suggested that if/when the time for a change came, I would know it. Until then, I was happy doing what I was doing so just told everybody to buzz off. It was liberating to not be in rush to do "the right thing" just because everyone else thought I should. Only do what you want and when you want. Don't pass up the pleasure you can experiance today for pleasure than may or may not be attainable tomorrow. Even if you do only one thing each day, count it as success. Hey, it's better than the alternative and being all down and depressed or 6 feet under. So, just one thing at a time to focus on and explore and to enjoy. When your ready to move on to something else, you'll know it. Good luck. Enjoy life -on YOUR terms. Make it as easy as possible to reach a goal of your own choosing.
Exactly how I feel everyone is pushing and pulling me in directions and right now I just need to hit the stop button on the machine I feel like I have been thrown into. After reading all these great posts I got a 6 month deferment til I need to recontact them which is just what I was looking for because I want to do transplant I just don't want to feel lost when I wake up after the surgery I want to wake with a thought out path ahead of me.
Thank you all for the kind support everyone, Charlie hope your fistula works better for you i ran one needle one cath line for a week til mine worked with 2.
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Hey Nathan,
I just talked to another newbie on the site, Robert, who is young as well but a bit older than you. From what I read, you went from perfectly healthy to gravely ill @ 250 miles per hour and just a few days...ANYBODY who experienced that would have the same feelings/issues.
We had similar things happen with our daughter, but she was only 5 months old (see in my signature for more info). It's completely overwhelming for sure. You have every right to be scared/angry and whatever other emotions that you are feeling. Nobody but you knows what you are going through...but you.
What I can suggest is that:
1) Take some time...take a deep breath and chart the course best suited for you. Feel free to ask any questions you can think of...There are SO many knowledgeable people here.
2) No matter what, get informed! Learn as much as you can about everything. Always ask the docs to explain if you don't understand. You have to be your own advocate. Doctors DO make mistakes...as well as nurses and social workers and dialysis techs, etc.
I wish you nothing but positive vibes going forward!
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I wish you nothing but positive vibes going forward!
Me too!
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Nathan. If you want to go to college start in researching benefits. Dialysis is considered a disability for Social Security. Since you are 26 a lawyer can make the case your benefits should be calculated on your parents income. Even if it’s based on your earnings SSA will help you get a education, They figure if you get an education you could re-enter the job market and leave disability.
Sp mod Cas
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Hello Nathan,
Welcome to IHD and I do hope you can - in your time - sort out the confusion about the different treatment-options in ESRF.
I had similar problems, when I had to start with dialysis and when my husband came forward to donate a kidney, I was totally against it. Now I am happy that I finally agreed, because that decision gave us a chance for his cancer to be diagnosed, treated, operated on just in time... Such is life sometimes ...
Of course the option of a kidney-transplant from my husband has gone but at least we are still together and that is so much more important.
I send you my good luck wishes from Kristina. :grouphug;
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hello, i have also recently been diagnosed and am not much older than you are (35). it all hit me like a ton of bricks as well. everything else in me is completely healthy and i was FUC$ING pissed when i found this out and still am. but have recently realized it does no good to be upset, and to focus all of that energy to getting fixed and back to normal and for me that is a transplant. i too had a bunch of live donors lining up for me and i quickly got my testing completed and now my live donors are starting theirs. if all goes well i will have a new kidney by the end of the year. all in all it will be 6 months from being diagnosed to getting a transplant which is not bad when you think about it.
im going to give you 2 things to consider when you read things online as well as on this forum:
1) the thing on "expected" life and "expected" kidney function. you have to understand that when they say your new kidney is expected to last 20 years that that is the AVERAGE. we are young. there are people who are 60-70 that get a transplant, do you think they last the average??? no... so that essentially brings the average down. which means someone else has to bring the average back up. so lets say the 65 year old has a TX and it lasts 10 years and he dies of something OTHER than kidney issues. well, the average is now 10. which means someone HAS to have a kidney thats lasts 30 years in order to bring that average up to 20. thats a positive for young people like us
2) i have found that people who have issues with the immunosurpressants are in the SMALL MINORITY. you have to think that last year there were over 13,000 kidney trasnplants done in the US. out of those, most are 100 percent successful and most you will never hear about. the people who do have issues are usually the only ones you hear about. i compare it to people who leave reviews on hotels... most of the time people dont go out of their way to leave a POSITIVE review, but if someone has a bad experience they will most definitely go ahead and make it a point to post their experience. thats what i found is most common even on this site. there are some 10,000 members but only 50 are active? that means that most people who get the transplant get on with their lives and dont have a need to come here and post anymore. AND THAT IS A POSITIVE THING
so keep these things in mind when thinking about a transplant. there is a reason the doctors will push for you to get one, it will give you your life back. and you cant worry about the side affects, people every day are diagnosed with cancer and bone density issues who are not a kidney transplant recipient.
my advice is to look at this as temporary. get proactive about it, get your testing done to get on the list and then get your donors tested and move on with your life. my surgeon told me that i will be "fine" afterwards. i am 35 years old. i am going to Tampa to get my TX and the AVERAGE from a live donor is 20 years. lets say i make it the average, even though i am young no other health issues and am hopefully it lasts longer. that brings me to 55 years old. 20 YEARS IS AN ETERNITY IN THE MEDICAL FIELD!!! they could very well have a "cure" or other advanced meds by then to make it last longer. but worst case, i get another transplant at 55 and take the average of 20 years up to 75. thats not a bad deal if you ask me. again, that is 40 YEARS FROM NOW!!! advancements in 40 years?? who knows, but its a good outlook to have
sorry for the long post, but bottom line is try to take that anger that you have built up and put it into the effort of going through the transplant process. i think you will be pleasantly surprised by the support you will receive by the doctors, your family and everyone else around you. you will have a retirement, you will live a normal life. take a look at the celebrities that recently came out. selena gomez, sarah hyland, alonzo mourning, sean elliot. all in their 20's and 30's when transplanted and all doing just fine afterwards, just LIKE THE MAJORITY OF PEOPLE YOU DONT HEAR ABOUT!!!!
PM me if you want my # i would be happy to speak with you as Bruce did with me and it really made a HUGE difference. thank you bruce ;)