About Carolyn & her defective kidneys

[adairpete]

Hi All, I have browsed these boards a few times and am glad that the forum has so many active members.  So here's my story.  I was born with distal renal tubular acidosis and medullary sponge kidney, both of which are inherited diseases in our family (my father and older brother both have it, too).  MSK is a structural defect of the kidney where my kidneys have a spongy appearance (or so they tell me, I have never seen them:) making them prone to infections and stone formation.  dRTA is a metabolic disease where my kidneys don't excrete acid like they should making stone formation a full-time hobby for my kidneys.  Before anyone was aware I had problems (first symptom was recurrent urinary tract infections) I had already a significant amount of my kidney function by age 9 (I'm 28 now).  I was only seen by specialists sporadically since then but despite that my kidney function has hung in there, but now it's down to 17%, prompting my nephrologist to refer me a transplant center.  Luckily, my younger brother is a willing volunteer to be my living donor and he is undergoing testing to see if he is a match. 
In the last 9 years I've had 4 stones, with the last one having to be zapped to pieces by laser lithotripsy.  My kidneys are so full of stones-they show up on x-ray.  My urologist has said he's been practicing for over 40 years and he's never seen kidneys so full of stones.  I'm also prone to recurrent kidney infections and because of the number of stones and risk of infection the transplant team thinks it's safest to remove my kidneys before transplanting a new one, so as to give the new one the best chance of sticking around.  I still have to decide whether to do this all in one surgery (which scares the bejeesus out of me) or doing the 2 surgeries 4-8 weeks apart (which scares me because of the dialysis in between and the fact that I would have to have 2 major surgeries not 1). 
Right now I feel mostly fine-I still work mostly full-time (all the dr's appointment cut in to my work schedule, though).  My biggest problem is chronic pain in my right kidney, nausea, and fatigue.  Actually, my biggest problem is mental not physical.  I read a book recommended by the transplant center's social worker and sort of freaked myself out.  I've had a couple of panic attacks and have been prone to crying whenever I think of the future.  My biggest freak outs have been over life on immunosuppressants and fear of the surgeries.  This may sound strange or even stupid but I wish at times that I felt physically worse than I do so a transplant would be welcome.  I'm sure I feel worse as my kidney function continues to decline but that scares me, too.  It all just feels so overwhelming!  I have a great boyfriend who is very supportive but I feel guilty for being such a downer at times and having this stupid disease that is going to not only change my life but his as well.  I'm trying to take it one day at a time and stay positive for the holidays, but it's been hard.  I do feel better writing this, espeically to an audience that can understand better than anyone what I'm going through. 
If anyone has suggestions or advice that might help me I'm open to it. 

[Wallyz]

This is not an end, this is a way through.  You are experienceing huge traumatic change.  It is appropriate to seek psychological counseling.  Reach out for help.  You are loved, and people want to celebrate your better health with you.

[RichardMEL]

I think rather than focus on scary stuff like surgery and drugs, the positive aspects are so important - you have a loving younger brother willing to donate to you - hopefully something that will change your quality of life for the better in so many ways. The future must seem very scary I understand... believe me... strangely enough I'm not scared of having a transplant and all the surgery - from my point of view they give me the happy drugs, I go under and they do their thing... sure I wake up in pain but the hard part will be done. I'm freaking out about the damn stent removal process!!! LMAO!!! I guess it takes all sorts!

If it was me I'd want to have both surgeries at once if the doctors thought it was practical and even preferable to do. Why? 1) get it all over in one hit - so you only need to be knocked out the once, and go through all that pain and hospitalisation and all that just the once (hopefully). I'm a big believer in getting the painful stuff done with as soon and as quickly as possible (I had all wisdom tetth done at the one time). I guess that's just me. In the end you have to do what YOU feel most comfortable with and can accept, because I feel one's mental attitude and emotional state can have a dramatic effect on how we deal with and get through a major event like this.

Anyway Welcome to IHD! Glad to have you with us Carolyn!! 

[Joe Paul]

Welcome adairpete , good to have you aboard.

[willieandwinnie]

adairpete. Great introduction and you have been through it. We are loaded with information and support and there are folks here that have had their kidneys removed before transplant and they will be along to answer your questions. Stick around and you'll find we are the most supportive group you will find. Post often and have a Merry Christmas. 

[monrein]

  and thanks for your great intro.  I first started dialysis at 26, did 5 years, had a transplant (cadaveric) that lasted over 23 years and now I'm back on dialysis, waiting for a live donor transplant.
I'm so sorry that you've already had to endure so much in your life and I'm glad you found this site.

[Zach]

Welcome to our community!
 

[kidney4traci]

I think it is natural to go through the possible senarios and get scared, mad and or a bit depressed.  However, realize in this phase you are usually pretty ill too and the physical effects of ESRD have chemical recations in the body that lend to that depression and confusion.  I am active and feel great now, even though I do dialysis 5 x/wk and have been on dialysis for 4 years.  I do it at home and I am in control.  My labs are great, I ust got a call from the dietician and said the same and that there was no reason to call her back as a result.  I am sort of scared too to get my upcoming transplant because I feel ok on dialysis  But I am sure I will feel better after and it is because the mojority of people on this site who have already had a transplant have assured me that I will.  Rest assured, this is a great site for you, you are in the right place.  You will have lots of threads here to help you live well.  Keep reading and posting.

[Bajanne]

Welcome to our community, Caroline!  This is a great place for support, information and even fun at times.  I am sorry that you have had to go through all this, but I continue to be amazed at the strength of the human spirit!  So you just keep on keeping on.  Read as much as you can, and please post as much as you can.  You are family now - 
Looking forward to hearing from you.


Bajanne, Moderator

[Ang]

  Carolyn

[jessup]

G'day and 

[Romona]

 

[coorsbob]

    Aboard Caroline !  Sorry I have trouble seeing this sceen. LOL
Feel free to post offten good to hear from you.We are all family here.