WORRIED AND SCARED FOR MY FATHER

[evie11]

hello everyone! I'm in NJ.. My dad was diagnosed with chronic Kidney Disease a couple  years ago. In april his Creatinine level was 4.7 and he fistula surgery. Now we are in August and he just did bloodwork and his creatinine is up to 5.9. he however feels super fine. As if nothing was wrong  he went to visit his family in mexico and he is so happy, I suggested he do bloodwork there, and he did and that's what came up. I don't know if the doctor will hold off on dialysis or have him start as soon as he gets back. He returns in two weeks.  I've heard dialysis is very debilitating. I don't want his beautiful smile to go away.  I'm so confused I don't even know where to begin getting him the help he needs. Should he already be on a waiting list for a donor? Should we visit the dialysis center to get a social worker assigned to him? I just feel really overwhelmed...I'm an adult and feel so frightened I'm sorry. Just looking for some support.  Thank you for reading my post.

[boswife]

It's always so nice when a family member comes on in behalf of their family... So,    So sorry you have the need to be here, but it's a great place to come for support and lots of great advice.  Right now, im off and running but wanted to welcome you, and others will come in for advice soon.  Dont fret too much, It's a shock at first, but very doable ... 

[MooseMom]

It's a scary time, no doubt.  I would suggest going over to Kidney School

www.kidneyschool.org

Have a read of all the modules at whichever pace is good for you.  You can do it all online, and it is tailor-made for patients or family members who find themselves exactly in your/your dad's position.  After you've read that, you will be educated enough to come back here for support and with any specific questions.  There is so much information to be learned so quickly, and I think Kidney School outlines everything is a very logical, accessible format that you will find to be very helpful.

[monrein]

  to IHD.  So glad you found us and hope that you'll find both information and support that will be helpful to you and your Dad.

[Brightsky69]

I am sorry that this is happening to you, your dad and family. I was completely lost when I first found out about my own kidney failure.

I would suggest going over to Kidney School

www.kidneyschool.org

Kidney school does look pretty cool.....   

[Rerun]

Hi Evie, and welcome to IHD.  I'm so glad you found us.  It seems that people start dialysis when creatinine reaches 8 to 10.  Depending how they feel... tired, nauseated, itchy skin.....  He needs to decide which type of dialysis he wants to do.  He will get his social work in time and they are usually idiots.... I hope you get a good one.  He needs to watch his salt intake.  Get Mrs. Dash instead of a salt substitute because salt substitutes are pure potassium and he should not have that. 

Stay tuned to this site.

Rerun, Moderator           

[lmunchkin]

Welcome Evie and so sorry you have to visit us, but for your dad, you have come to the right place!  Kidney School is a good start!  My husband has kidney failure too and that was the first place we went was Kidney School but not on line, but an actual office at Fresenius Clinic where they went over all options with us at that time!

First I would like to commend you for being there for your father! Stepping up for him is very important to his well being.  Just take things slow and learn what is best for him and you!  He does have a nephrologist, right?  His Nephr. should let him know what he needs to do, in the mean time, you come to this site for any questions you may have, cause someone will have an answer for you!  Everyone on IHD has gone through what your dad has gone through and some, like you and I, are very much a part of the kidney disease because it is amoung us.

When he gets back in 2 weeks, get him to a nephrologist.  The neph should and will guide him in what he needs to do!  Please come here first and let us know what his doctors say.  They do not always know how to relate to patients, but they try I think, but on this site, you can find out what Doctors are saying in Layman terms, simply because we have all been through it.

Listen Evie, dont be afraid ok?  Yes this is a very very serious disease and can be fatal at times, but if your father does what he is told, he can live for quite a few years on Dialysis.  My husband has been doing it for 7 years to date and is doing quite well!  There will be a big change in his family's life, but it is not the end of the world!  There are some on this site who have this disease and do it all on their own.  YOu will meet some of them, but for now, just take a deep breath and calm down for your Dad.  You must be strong for him, ok?

It is very tragic that this happened to him, but it may seem overwhelming right now, but it can and it will get better for you both!
Will be praying for you both,Evie!  When he gets back from Mexico, ask him to peak in on this site.  Lots of encouragement from people here, not to mention the Knowledge.

God Bless You, Evie

lmunchkin     

[Ang]

 

[Bajanne]

Welcome to our community!  Members have already given you very good advice.  Don't be afraid!  Things do work out.  And if your dad has a good attitude, that will continue to help him get through all of this.  It has certainly helped me.  And you now have your IHD family    a wonderful group of sharing and caring people who will be with you all the way.  So cheer up!   Just make sure that you read as much as you can and post here as much as you can, so we can know how your dad is doing.




Bajanne, Moderator

[looneytunes]

 

[TINA HUBB]

Nobody wants to be in this situation but the good news is that your dad has a few great transplant hospitals to choose from here in NJ. I live in Wall NJ and have gone through this process with my daughter two times. I found two great hospitals here which are Robert Wood Johnson( New Brunswick)  and St. Barnabas (Livingston).They have incredible surgeons!
There is also the Hospital of the University Of Pennsylvania or Penn Transplant Institute in PA. These are all places that you could look into and see If you like them or not.
You can look at the Scientific Registry of Transplant Recipients (SRTR) and get stats on outcomes etc. Penn transplant Institute offers stats on their home page. Also , know that your dad can be listed in more than one transplant center. He could list with one here in Nj and list with Penn Also. This way he has a greater chance of transplant.
Get as much info as you can and you'll know where your dad should be. Stay positive and I know that things will work out fine.
Best of luck to you both.