Hello from Wisconsin

[Titanic1912]

Hello I'm Julie from Wisconsin. My husband is on dialysis 3 days a week. We are both type 1 diabetics who met while working at the same company. We have been married 13 wonderful years. I have also been a kidney patient ( so far no dialysis needed ) since the age of 4. My husband and I both enjoy listening to music  , watching TV and movies , and trying new recipies 

We are both Titanic      nuts (our wedding song was My Heart Will Go On). I'm looking forward to posting on this forum and learning new things about dialysis.

[lmunchkin]

Welcome Julie!  Glad you found us!  Wonderful people who are full of knowledge & support!  When did your husband start Dialysis?  Can he get a transplant?  Please tell us more!

Again Welcome & God Bless,
lmunchkin
 

[ToddB0130]

Welcome to the board.  I hope things are going well for your husband on dialysis.  He is very lucky to have your support.  There's lots of information here and plenty of really nice folks.  Hope you'll contribute a lot and maybe your husband will join too.  Best of luck to both of you.

[Titanic1912]

My husband started on PD dialysis in 2010. He had lots of problems doing PD and the port ended up getting infected. He switched over to Hemo in August of 2011 and has been doing better (labs) since switching. I would like to see him get a transplant but he is on the fence about it. He has alot of fears about getting on the transplant list (he was told he could get cancer from the donor, he is worried about paying for the rejection drugs, etc).

  The dialysis center we are going to down just dropped a bomb shell on us - they are moving all the patients to M,W,F schedule. SO instead of going T,TH, Sat from 7am to 10am he will be starting at 2:30pm and stopping at 5:30pm. He has been worried about that now (and that starts soon) because he is going to have to change his schedule (and all our plans, the day is now shot as he puts it). They didn't even ask if the time was OK. I know he is worried about his insulin schedule now as well as his GI problems (he has immediate stomach issues after he eats & he is afraid of eating and then going anywhere so now he is worried about having a accident on the chair if they don't get him off in time). I don't know who to talk to about his worries and I don't know if talking to his primary Dr will help any (don't know if she can step in). I could use some advice. My husband is worried that if we complain he will get marked as a patient that likes to cause trouble. We live in a small town and don't have another unit close enough to switch to.

[lmunchkin]

I don't know where you live, but if you live in the US, you can certainly ask about Home Hemo!  Even if you have to drive a good distance for training, it is well worth it in the long run!  My husband started on PD and it did him well for about 5yrs.  But like yours, he had to give up due to infection.

Ask your neph about Home hemo, especially the NxStage!  We do NxStage on J. and it has really been a Godsend.  I work during the day, then come home and D. him in the evening.  It is so worth it by being in your own surroundings.  You can set your own times and be responsible for your own care.  Nobody looking over your shoulder or telling you, NO all the time! 

Then there is Nocturnal hemo, that he could do all night and free up his days! That, IMO, is the best going for dialysis (except for Transplant).  My husband was tested and rejected for a transplant, but like yours, he had reservations about it from the start!

Just check around and find out about Home hemo.  It will be overwhelming at first & takes a lot of commitment, but Im so glad we stuck with it, cause it has made a big difference in our lives!

Keep us informed, ok?  We will try to get you through all of this, Titanic!  You are not alone here.

God Bless,
lmunchkin
 

[willowtreewren]

Hi, Titanic!

 

I was going to chime in about doing home hemo, but I see that Lmunchkin already did that. 

I would also advise you to have your husband go ahead and get listed for transplant. The wait tends to be several years, and he can weigh his options and learn more about the side effects during that wait. In the end, if he decides against it, nothing will be lost.

You'll find lots of friendly folks here ready to share information and support.

I'm glad you found us.

Aleta

[Poppylicious]

  Julie (and Husband!)

[Rerun]

Hi Julie and welcome to IHD.  I'm so glad you found us.  I've seen Titanic only once and that was enough.  It stresses me out to see someone trapped and drowning in icy waters.  After the cruise ship in Italy went down and it is on the news again and again it just makes me anxious.  There is no way you could get me on a cruise now.  Besides that....  welcome and I'm looking forward to hearing about you and your husband.

Rerun, Moderator      

[Ang]