New Person.

[UkrainianTracksuit]

Hello 

As you can see, my name is UkrainianTracksuit.  It’s an inside joke.  I am 29 years old and I’m pre-dialysis not for much longer. (12% function) I am type 1 diabetic for all my 29 years.  My kidney disease started as a child but it went untreated. As a 7 year old, I was anemic and had high blood pressure.  In old USSR/Russia, they didn’t have the means to treat the pediatric high blood pressure.  Eight years later, as a hunch, a doctor decided to investigate my kidney function again.  It came back even more impaired.  I was sent away for a renal angiogram and the results showed my kidneys had a lot of scar tissue.  My parents said no to a biopsy.  After this, I still did not have a nephrologist and no one bothered with my kidneys for a few more years.  I hope you guys understand the state of medical care over there at the time.  At the age of 23, my family moved to Canada and I have a renal team working with me.  I follow my renal diet very strictly.  I keep very tight control of my blood sugars.  My blood pressure is good and I take all my medications.  I don’t know what else I can do.

I believed that kidney disease would not interrupt my life.  I was stupid.  My nephrologist tells me not to travel to Eastern Europe because of the lack of facilities.  I miss family over there.  My friends have left me too.  With the fatigue and nausea, nobody invites me out anymore.  Out of sight, out of mind.  In fact, my last friend has left me in April to hang out with “better” people.  My family is ULTRA-traditional Russian.  While my parents are supportive of me financially and a roof over my head, they are not very supportive with my kidney care.  They are concerned but they are like ostriches.  They put their heads in the sand.  I say to them that they must accept the reality and the future consequences.  I don’t know if it is fear or anger.  They aren’t very big on discussing feelings.  They do not want to hear about it and they believe a miracle will happen.  They take me to my doctor appointments and they are there for me in that respect but they like to block it out.  Being in an ultra-traditional family, we live in an ethnic neighborhood with a bunch of other Slavic people.  This is another reason why I feel so alone.  They pass judgement on me and there is name calling.  Lots of organ donation/selling jokes.  A lazyperson looking for excuses.  They believe that being “sick” happens only to “old people” or people that caused things themselves by “bad living”.  My parents want to have me married but that isn’t going to happen soon.  They’re becoming embarrassed of me in that respect.  Again, since they are ultra traditional, they want to find me a fellow Russian or Ukrainian or Belorussian.  They are at the point they would spring for a Pole!  These are not the most understanding men.  Since my nephrologist is greatly advising against becoming a baby machine, so no grandchildren, my parents nag me.  This is yet another problem with kidney disease and my family experiencing kidney disease.

I should add that my 87 year old grandfather is on hemodialysis.  He says how much he hates it all the time.  It’s all he talks about too.  When he gets into his cranky moods (often), he threatens to quit dialysis and die.  Being an old Soviet army man, he is very stubborn and doesn’t follow his fluid intake or diet restrictions.  We control his diet but he likes to sneak bacon and sausages.  And tomatoes from the garden.  Mushrooms.  And chips.  (Need I go on?) We have to deal with his post-dialysis cramps, crankiness and blood pressure issues since he lives with us.  When there is a problem with his blood work, we visit the renal dietitian and we have to deal with it.  In my home, it is 24/7 negative dialysis talk and that gives me even more fear.

I’ve given you this information because I want you to understand how alone I feel.  I do not know anyone that I can openly talk to about kidney disease.  In this past month with the function at its lowest ever, it has turned into a depression.  I feel trapped and I don’t know where to turn, what to do or who to talk to.  This is why I am very happy to have found this place.  Here, we can be real even if reality has its bad moments.  But, when I read this forum I feel sadder.  There are people here who are so strong that I feel bad to even open my mouth over frivolous concerns.  I feel like a big idiot. 

Thanks for reading this and I am sorry it is so long

[Zach]

дурак? Нет!

Welcome to the community.
 

[Shaks24]

Welcome to IHD. I think you will find this community very understanding. No need to say sorry. I hope this site helps you release frustration and gain friends who are compassionate and understanding. 

[galvo]

G'day, UkrainianTracksuit!  What an interesting and detailed tale you tell! Firstly, you are not a big idiot. Secondly, your concerns are not frivolous - they are very real and are hurting you. I have no helpful answers for you. I have never been part of a tightknit family/ethnic clan situation. However I can tell you one thing  - you have now joined a new family here with whom you can share your thoughts and feelings. We are a mixed bunch but we are all kidney people and we understand.

[Angiepkd]

Hi Ukrainian Tracksuit  and  ! I am not from a family exactly like yours, but mine is similar in their opinion of kidney disease.  Strong Germans who think sickness or crying is a sign of weakness.  I have PKD, an inherited, genetic disease, so you would think they would be a little more understanding.  Especially since they gave me this problem!  I know they love me and try to be supportive, but they just don't know how.  My way of dealing is to say I am fine when they feel obligated to inquire.  If I tell them the truth or complain, I see their eyes glaze over as they try to tune me out.  I am so used to it that it doesn't even phase me any more. 

It is so much harder for the younger people in your situation.  I really hate that you have to deal with all of this before you even turn 30.  I am 44 and have trouble accepting things.  I have been on home hemo for 6 months.  One thing I can tell you is that D is not so awful.  My dad and brother had to do in-center and were sick all the time.  I haven't had any of those issues.  I felt so lousy prior to starting treatment.  Nauseous, tired, depressed, swollen, foggy...you know the symptoms.  I can honestly say that I feel much better on D.  The needles are no big deal and being at home makes things more comfortable for me.  I have more energy and can manage almost as well as before my kidneys failed.  Don't be afraid to look into PD, also.  Lots of info here about the different modalities.

Don't ever feel like you are alone!  If depression is a problem, talk to your neph about medication.  I couldn't believe how sad and lonely I felt as my function declined.  I asked my doc about it and he told me depression is common in people with ESRD.  He prescribed me Zoloft and I feel much better since I started taking it.  I call it my "happy pill".  It was hard for me to accept the fact that I needed medication for depression, as this is also a sign of weakness in my family.  But I was tired of feeling down and not living my life to the fullest.  I have no regrets about getting help!

Hang in there!  Things do get better.  Looking forward to hearing more from you.  Sending you hugs and strength!

[UkrainianTracksuit]

Thanks to each one for the warm welcome.

If not help for myself, I am glad that there is a place for questions about my grandfather too.  This is one of those rare times I wish he knew to use a computer!  And trust me, after computer lessons he failed at the public library, this is a rare wish! 

[Poppylicious]

Hello Ukranian Tracksuit!

 

G'day, UkrainianTracksuit!  What an interesting and detailed tale you tell! Firstly, you are not a big idiot. Secondly, your concerns are not frivolous - they are very real and are hurting you. I have no helpful answers for you. I have never been part of a tightknit family/ethnic clan situation. However I can tell you one thing  - you have now joined a new family here with whom you can share your thoughts and feelings. We are a mixed bunch but we are all kidney people and we understand.

I completely second this.

 

[UkrainianTracksuit]

Is "interesting" good or bad?  Or is this "space aliens with kidney disease" interesting kind?   

[cattlekid]

Hello!

Being that my husband's family is from the former Yugoslavia, I think I get the joke about the Ukrainian Tracksuit, just change the ethnicity.   

Also, I can see where you are coming from with dealing with your grandfather's coping abilities.  My FIL is also in his 80's and completely does not care about what the doctors say he needs to do to address his health issues.

I am somewhat immune from all of the madness because I am just a daughter-in-law, and my SIL has given her parents a granddaughter.    The worst I ever had to deal with is my idiot SIL trying to tell me that the Orthodox religion does not allow for organ donation.  Of course, we consulted with a priest from the local monastery who is a family friend along with reading from the OCA website and she was completely wrong. 

I will finish by saying that if you would ever like to vent about dealing with ESRD as someone younger and with an Eastern European background, just drop me a line.   

[Rerun]

Hi, Welcome to IHD.

Look forward to hearing more from you.

Rerun, Moderator    

[galvo]

Is "interesting" good or bad?  Or is this "space aliens with kidney disease" interesting kind?   

Interesting as in 'engaging the attention', neither good nor bad. Occasionally, 'space aliens with kidney disease' join our happy family. They can be indeed 'interesting'.

[RichardMEL]

WOW Ukranian Tracksuit.... love the nickname, love the introduction - so well written and evocative - hate your situation.

If I knew the Russian I would write it, but all I have is poor English: YOU ARE NOT ALONE HERE!!!!!

I was reading through your story and thinking wow, what an interesting person with rich cultural history (I am somewhat of a Russophile myself, but I think I best hide my Shostakovich collection from your parents!!  ) and I just love the pictures you paint.

As I was reading on about half way where you discussed your parents' heads in the sand, I thought "Just wait till the reality of you being on dialysis hits and they SEE it for themselves it may make the reality of it come into sharp focus" but I was then disappointed and sad to read of your grandfather's situation (even with his cheeky sneaking of  "bad" food - heck he's 87 I say he's probably earned a bit of pleasure from time to time) - if they do not see how important and critical that is then I can absolutely understand how alone you feel...

I think many of us out here wish members of our own family and community would understand more, but often it is hard for those who have not "been there, done that" to really have some understanding. While you haven't quite got the tshirt yet, they are taking measurements for a nice fit.

I am so glad you have found us and hopefully a community even more far flung than the many timezones of the Russian Federation, and people who can understand through experience just some of the things you are dealing with, if not all of them. Here is a place JUSt for people like you - to vent, to cry, to scream, to share stories, to ask for advice, to get support... I really hope this is a place that can help you on your journey as you seem so alone with the lack of friends and family support.

Just on your "friends" leaving you for "better" friends - here's how I see it... they can't have been very good "friends" to you in the first place if they run to spend time with healthy people etc. Sure, I get it's no fun if you're tired and feel like crap and can't do this or that, but for me if you really value someone it's not about what you do with them, but who they are that counts. I think YOU are the one who needs to search for "better" friends!!

Again, welcome to our community. I look forward to hearing more, and my next shot of vodka I will spare a thought for you and your situation. 

RichardMEL, Moderator

[obsidianom]

I too feel for you and want to help. My ancesters were from Russia and Lithuania so we have some common ground. Also I used to teach Medical courses all over Canada. What provinence are you in? I have been to every province except Saskatchewan.
First off I can offer medical info as I am a physician and my wife is on home hemodialysis that I do . I treat a lot of diabetics and see patients on dialysis although I am not a nephrologist or endocrinologist. While I cant give you specific  advice on what to do medically, I can answer questions and help you figure things out  and work better with your medical team.
I also think you should consider some local therapy or support group . Depression is a horrible problem and shouldnt be treated lightly. It can cloud your entire mind and affect your decision making and coping ability. Dealing with it can make your life so much easier. Diabetes and kidney diease are bad enough but depression can be worse, whatever the cause. There is therapy and if necessary , medications. Dont let ANYONE including your family talk you out of getting help. 
Use all of us here for support. We all have different backgrounds and experiences which you can tap into. Hang in there. It will get better.

[Sugarlump]

Welcome from 
Step into the wonderful world of kidney failure. (heavy english sarcasm here)
This is the one place where people do understand...

[UkrainianTracksuit]

I was reading through your story and thinking wow, what an interesting person with rich cultural history (I am somewhat of a Russophile myself, but I think I best hide my Shostakovich collection from your parents!!  )

RichardMEL, Moderator

You may have to hide your Shostakovich collection from me too; I'm a big fan.     But then again, who isn't, right?

What provinence are you in? I have been to every province except Saskatchewan.

I'm in Ontario; you've most likely been to Toronto.   

And thank you Sugarlump for the welcome!  Thank you all for being so kind.  It means the world!

[RichardMEL]

oooh a fellow Shosty fan.... excellent!