MooseMom and MooseMom's Mom

[MooseMom]

Thank you for the opportunity to introduce myself and also for the opportunity to get to know the rest of you.

I am not on dialysis.

However, I have CKD (fsgs).  I was first diagnosed 15 years ago.  I lived in England at the time.  I was never treated for anything other than slight hypertension.

I moved back to the States a couple of years ago, and knowing that I needed to see a doctor on a somewhat regular basis, I registered as a new patient with a local doctor in a large family practice.  Since I was a new patient and had a history of renal disease, he ordered a bunch of basic tests, and we were both floored when the results showed that I had very high blood lipids, etc.  I was immediately referred to a nephrologist who promptly told me that he had "little hope for those kidneys" and should go on the transplant list.

Needless to say, I was stunned.  I've never quite recovered from that day.

Long story short, I still have enough renal function left (about 30%) to keep me off the list and off of dialysis.  I think my nephrologist assumed that my condition would quickly deteriorate.  I take all kinds of meds for high bp, cholesterol, and I take more meds as preventatives (Zemplar, foltx, allopurinol).  I also take cyclosporine.

The good news is that my condition seems to have stabilized, and my nephrologist says I am doing "very well".

Still, I know that the good news may not last forever.  So, I struggle with my desire to be informed about dialysis and my desire to not think about it at all.  The idea of dialysis truly terrifies me.  That other people do it and can cope with it does little to relieve my fear.  I know that it may be in my future. 

I have discovered that the emotional and psychological toll CKD has taken far outweighs any physical discomfort.  I have tried counselling, and once I even tried hypotherapy.  The only thing I have not tried is medication. 

It took me well over a year to be thankful for my so-far successful treatment instead of being just terrified all the time.  I am afraid of being too hopeful; optimism scares me because it leaves me open to being sandbagged again.

Reading this forum and joining this site takes a lot of courage from me.  It is not easy for me to write these things.  I would rather avoid the topic altogether, but I realize that anyone with a chronic disease needs to learn as much as possible, and as scary as it is, I need to perhaps find some courage from the rest of you.  I can be such a weenie sometimes.

Ironically, it is my mother who is on dialysis.  She had bypass surgery due to an aortic anyeurism, and when they termporarily cut off the blood supply to her kidneys (standard procedure for this particular type of surgery), her renal function never recovered after the restoration of renal blood supply.  The bypass surgery was a success, but she was one of the very unlucky few whose kidney function never returns.  She has struggled for the past 18 months with her access.  She has had a chest catheter for all of this time; she has also had surgery on her fistula (which has never worked) three times, the last time only yesterday, this time performed by one of the top vascular surgeons in the city.  Over all, her health is quite good, but this business with the fistula is very aggravating.  She is handling all of this with much greater aplomb than I think I ever could.

Good luck to all of you.  Thank you for a very informative site.  I am glad to see how you all support each other.  Emotional support is not given enough consideration by our physicians, really.  I look forward to learning a lot about dialysis, and perhaps a greater understanding of the issues involved will soothe my nerves.

Thank you.

[Zach]

Glad you decided to join the community!  Looking forward to your posts.
 

[Black]

Excellent introduction.    The courage with which you wrote that wonderful introduction will serve you well in handling ESRD and whatever comes ahead.  We all experience the terror of the unknown,    but you will now find it easier to cope because of the education and support you will find here.   

[boxman55]

  Hope your 30% lasts forever!!!!! Boxman55

[Sluff]

Great Introduction. You will find all the support you need, right here at IHD. The members here are as honest and straight forward speaking as you will find anywhere, in fact we consider ourselves family.

So thank you so much for taking the first step, and for becoming part of our community and family.

I too am FSGS diagnosed so I know exactly how you are feeling. Relax, ask questions, post often and read.

We even have a section just for caregivers here: http://ihatedialysis.com/forum/index.php?board=33.0 that will get you started. If you have any questions feel free to ask.


Sluff, Moderator

[Nan]

Dear Moosemom, Welcome to this wonderful site  I can completely relate to your situation and fears. And my mother had the same surgery and her kidneys failed and they put her on dialysis...but after a few days, everything started to shut down and I lost my best friend.
My younger brother has the same disease that I do....and it is very difficult for him to be around me....it is the "mirror image" of sickness that frightens him....I am his future.
I am glad you have found this group....it will be the support that you need.
 

[anja]

   MooseMom, to the family.  I, too, know how terrifying it can be to watch a parent struggle on hemodialysis.  My father has been on hemo for 7 years and he is nearly 89.  He does very well and also has a chest cath. that the neph. has wanted him to change, but he declines.   I was lucky to find this site and be educated in that there are alternatives for some people as to the type of dialysis they do.  I am one of the lucky ones that can do Peritoneal Dialysis (PD) and am so thankful for that fact!  There are several of us here at IHD and we all have individual stories, I suggest you check out the' Home Dialysis' section to learn more.  Don't be afraid to learn, knowledge is power, power over your own circumstances and future.  I am glad you took the first step and acknowlege the facts that dialysis may be in your future and you will be equipped to handle it.  We will be glad to help in any way we can.  Your introduction put into words what we have all felt at one time, it takes courage, yes, but you can do it.   

[Joe Paul]

Welcome Moosemom, good to have you aboard.

[Jill D.]

  MooseMom! You will find this site very helpful and informative, and hopefully will help you cope with what you are going through just by knowing there are others of us out there with similar issues. I have traveled a similar road as you...I was diagnosed with FSGS in Nov. 1990. Things were very good, and my function was at 30% until about 4 - 5 years ago when I had a couple of big drops in my kidney function. When my doctor started talking about pre-dialysis classes and getting on the transplant list, I FREAKED out!!! In time, I found that the best way for me to deal with the info was to: get information; take good care of myself; keep busy as to not dwell on things I could not change; and deal with situations as they arose. I began planning a "pre-emptive" transplant (transplant before dialysis) in 2003 by getting evaluated and having donors tested. As soon as I could, I also was put on the transplant list. My initial transplant was scheduled in Aug 2005, but my PRA was high, so it was cancelled. I did have to start dialysis in April 2006, but had my transplant on Dec 5, 2006 and so far I am doing great! My advice is to reach out to as much support as you can...family, friends, co-workers, church, IHD...and ask as many questions as you need to your doctors, nurses, techs, etc. You are not alone!!!  

[paris]

Welocme.  Their are several of us here with FSGS and we all seem to have a similar pattern.  I think you will enjoy everyone here. 

[goofynina]

Welcome Moose and Moosemom,  I am so happy that you found the courage to come and introduce yourself.   I know how hard it is dealing with this disease and still find it a struggle to accept it (i too can be a big "weenie" at times)    But, i tell you one thing, finding this website has been the best thing that has happend to me.  Not only is it informative on this disease it is the BEST support group for me (and alot of others as well)  I hope to hear more from you and i too hope your 30% last a long time.  Good luck and keep us posted, k 

Goofynina/Admin.

[Black]

... had my transplant on Dec 5, 2006 and so far I am doing great! ...

Jill, this is off topic, but I just have to say how grateful I am to ALL of you who have your transplants and continue to come here for the rest of us.

[Rerun]

MooseMom.  Thank you for joining our site.  There were so many words of advice I was going to give you as I was reading your post.  During the first part I wanted to say "Hey, you have 30%, you see the doc regularly, so go play and live your life".  Then when I got to you Mother being on dialysis, that put a whole nuther spin on things.  You can't really forget about it now can you?  So, now my advice is to learn all you can.  Not for you (yet) but for your mother.  It will be easier to learn with her.  I agree with anja about you looking into Peritoneal Dialysis. 

Dialysis is a scary consept.  No doubt about it, but I am the biggest "weenie" and I do it.  I know that gives you no comfort!  LOL


Rerun / Moderator

[jedimaster]

  Once I learned that I lost my kidneys, it took 8 years to get to dialysis...I followed all instructions given to me, diet, etc...so I guess I was lucky to last that long....learn as much as you can  now, for you and your mom, but enjoy life to the fullest...

I complain a lot about dialysis, but with my family's and friend's support.....here I am...enjoying life as much as I can....

[jbeany]

 

The more you know, the better chance you have of doing what it takes to preserve your kidney function as long as possible.  Good for you for taking the first step!

[kelliOR]

Nice to meet you , MooseMom 

Kelli

[angieskidney]

Once I learned that I lost my kidneys, it took 8 years to get to dialysis...I followed all instructions given to me, diet, etc...so I guess I was lucky to last that long....learn as much as you can  now, for you and your mom, but enjoy life to the fullest...

I complain a lot about dialysis, but with my family's and friend's support.....here I am...enjoying life as much as I can....

Ya there are low protein diets to help when kidney function is getting low but you are not yet on dialysis. Low protein is easier on the kidney(s) so that you can hold off dialysis.

  MooseMom, I hope the 30% holds up for a long time til you are finally "ready" and not so scared. I had been through a LOT already before I had to start Hemo. I am just glad I started with Peritoneal dialysis as it wasn't AS scarey. So it was like slowly getting into the dialysis way of things.

[shay_pcb]

 

[Bajanne]

Welcome to our community.  This is just the place for you to be.  You are facing a serious challenge, but this site will show you that you are not alone.  There is so much here.  You can get information, shoulders to lean on, a place to vent, or rant, or ask questions, entertainment, advice.  Just keep reading.  And please keep posting.  We want to know how your Mom is doing and how you are doing. Our caring thoughts are with you as you seek to play this difficult (but not impossible) hand that has been dealt you.

Bajanne/Moderator

[MJB]

Hi MooseMom,

 Welcome to IHD.

Mike

[MooseMom]

You are all very generous with your understanding and support.  Most people on dialysis would have read my post and would have thought, "What's HER problem?  She still has 30% and she's not stuck on some machine.  She shouldn't be complaining."  And frankly, they'd be right, and I know it.  But you know how every once in a while, you think that you really should feel one way, but you just can't?  You can't always control your feelings.  But I am slowly coming around, and I really DO want to get out and enjoy my life.  And I will.

In my own defense, I will tell you that other things have complicated the picture.  We rarely get the luxury of being able to face just one big hurdle at a time.  An acquaintance of mine who is a psychologist told me about the 10 most stressful events in a person's life, and in the past three years, I've had eight of them.  So the obstacle presented by the probability of having ESRD at some point in my life pretty much pushed me over the edge.  And then when my mom got ill, well, it has been tough.  But life doesn't stop just because you have CKD; it doesn't immunize you against other problems that crop up.  I'm sure all of you who are already on dialysis still have to cope with other big issues that have nothing to do with kidneys!  It's just when everything hits you all at once, you know?  It knocks the wind out of you!

As for my mom, she had surgery on her fistula on Friday like I said, and she is doing well, continuing to use her catheter for at least another couple of months while waiting to heal.  They don't really know why the original fistula didn't work, but maybe the work of a more competent surgeon will do the trick.  My mom lives on the other side of the country from me, but I visit her frequently and we talk each day.  We tell each other how much we have cheated on our diets (her downfall is cheese and mine is beans.  I had a coke the other day...Bad MooseMom!) and we joke about how much we'd love a good dose of phosphorous (all of my favourite foods are full of the stuff).  Who would have known how funny phosporous could be...

My son is autistic.  When he was first diagnosed, I called hospitals, I talked to experts, I researched and read and did everything to learn about as much as I could about autism.  I was consumed.  And you know what?  I found out that 90% of everything I learned was completely irrelevant, that my son was an individual and that his autism didn't change that.  I filtered out all of that information from all of those books and lectures, and I was left with only the stuff that applied to my son.  Researching dialysis is the same sort of thing.  I have learned all about fistulas and NXstage machines, the pros and cons of in-center dialysis versus home dialysis, and I have come to see that I won't really know what I want until the time comes, until I discover what will work best for me.  I know that this forum will be of tremendous help to both myself and to my mom.  Again, thank you.

[angieskidney]

I got an email about how people at IHD are not like people at most other forums. Maybe that is why

You are all very generous with your understanding and support.  Most people on dialysis would have read my post and would have thought, "What's HER problem?  She still has 30% and she's not stuck on some machine.  She shouldn't be complaining."

So it would seem you can complain all you want and still be accepted Complain away

I found out that 90% of everything I learned was completely irrelevant, that my son was an individual and that his autism didn't change that.  I filtered out all of that information from all of those books and lectures, and I was left with only the stuff that applied to my son.  Researching dialysis is the same sort of thing.  I have learned all about fistulas and NXstage machines, the pros and cons of in-center dialysis versus home dialysis, and I have come to see that I won't really know what I want until the time comes, until I discover what will work best for me.  I know that this forum will be of tremendous help to both myself and to my mom.  Again, thank you.

Very good insight and so true! Everyone's experience is different, even with Renal Disease!

[nextnoel]

Welcome, MooseMom and MooseMom's Mom! I enjoyed your intro and subsequent post - I really identify with your thinking, and I'm looking forward to hearing more from you.

[BigSky]