Glad to have found this site!

[Semanticsinahat]

Two years ago my husband (28, generally healthy) went in for a routine blood test to refill his blood pressure medication and the nurse called to tell him to go to the ER b/c his creatnine levels were showing a eGFR of around 25. Neither of us had ever heard of CKD. They thought maybe it was an acute flare up of something else, but a biopsy showed scelorosing IgA nephritis. When we requested his Air Force medical records (he had just separated the year before).. The lab results for the past four years showed elevated creatnine, low albumin, protien and blood in his urine, high blood pressure and lipids... And yet no one had ever said a word to him. that was really frustrating to know that this had been going on for years and we might have had a chance at slowing down the progression to put off dialysis. The nephro told us at the time he wouldn't make it to Christmas before he needed to start D (it was June).

He started on more bp meds, steroids and a new diet. He dropped down to 18 within a month, so they took him off the steroids. He went back up to 20, and got on the transplant list. He hovered between 15-20 eGFR these last two years, but over this summer has steadily dropped. He's at 12 now, preparing for dialysis.

the doctor said he doesn't even talk about surgery until people hit 10%. I came on here to learn more about the processes and people's experiences. We are hoping he can do PD at home with a night cycler.

I guess I'm just wondering how long it take to heal from the tube, and how long the training takes to be able to do it at home and if people were able to keep working throughout the process.  I know millions of people have lived full lives while on dialysis.. But adjusting to everything is such a stressful process.

My husband is a computer programmer for a government contract. We are lucky that he has a great job with amazing bosses that seem very willing to work with him.. But I'm still pretty freaked out about him not being able to work.. I'm a stay at home mom/student with 3 kids. We don't have any family support and Im not sure what we would do if we lost his income. Even if got a job I wouldn't be able to make 1/4 what he does. ;(

[Comeback Kid(ney)]

If your husband is the type that pays attention to detail well, then, in time he will adjust to PD. I have been doing it for 3 years and though it can be a pain in the you know what, it does give you incredible independence and control over your dialysis. Best of luck.

[CebuShan]

      Semanticsinahat
Glad you found us. There are many people here that can answer your questions.
I do HD in center because they came out & checked my house and said I didn't have enough room (at thistime, true). Plus they strongly suggested that I get rid of my pets! Not gonna happen! Also, I was told to completely close off the room from heating and air conditioning! No way! I would either suffocate or freeze! (we need better insulation).
Check out all the threads or start your own.  A lot of wisdom, experience and caring people here.
Again,   

 

[okarol]

Welcome!
Is there any chance a family member or friend would be able to donate a kidney? He could get a preemptive transplant and not have to start dialysis, if possible.
I hope you find good support and lots of information here.
Best of luck!
okarol/admin
 

[Poppylicious]

  Semanticsinahat ... love your name!

[MooseMom]

Our members who do a lot of advocate work will tell you that in the early days of dialysis, the whole idea was to keep patients employed.  When Congress decided to enable people with ESRD to become eligible for Medicare, the rationale was that the cost of their treatment would be offset by their return to employment and, so, the income tax they would be able to pay.  Well, then the big corporations decided they wanted a piece of this financial pie, so they convinced the powers that be that patients would be just fiine with in-clinic treatments three times a week.  But that minimal amount of treatment at a clinic (on the clinic's timetable, not the patients') meant that most people on dialysis were taken out of the workforce for two main reasons:  1, they were too ill from inadequate dialysis to continue working, and 2. they had to conform to the clinic's schedule and couldn't make time for employment.

If your husband wants to keep on working, those are the two traps to avoid.

There are two ways to go, it seems to me, and you've already hit on one.  There are plenty of PD patients on this forum who continue to work.  The other modality to look at is home hemo on NxStage, either short daily hemo or nocturnal hemo.  Your husband will be healthier AND he will have the time to keep working.

I can't really answer how training to do home hemo will affect your husband's work schedule.  The training doesn't last forever, and I know my clinic starts training at 5AM for folks who need to get to work.  Perhaps you/hubby could ask your clinic what their training schedule is.  I would think that now might be a good time to contact the clinic's social worker.  A good social worker will do everything possible to make sure a patient keeps working because clinics LOVE that private insurance that comes with employment, so it is in their best financial interest to keep your husband in his job, believe me.

This is a stressful time for you both, so I am really glad you have found this forum because I know we can help.  Welcome!

[Bajanne]

Welcome to our community, Semanticsinahat!  Love your name!  When Ifirst saw it, I said "hey we have someone from the Phillipines!!"  Then I looked again.......
I am so glad that you found us.  This is a lot that you are going through and this is just the place for information, support and encouragement.  You are free to rant, rage, vent and rave when you want to.  Peiople here UNDERSTAND what you are going through.  And you are soon going to discover that we are a genuine family here - caring and sharing.  Maybe your husband can check us out as well.
I am doing in-centre haemo, and I have never really stopped work (couldn't) and now I hold down two jobs, so it can be done.  There is lots to read here concerning the various modalities and possibilities.   When it get a lot for you, just check out the caregivers' section - a very supportive group.
Keep reading and keep posting.  Let us know how your husband is doing.






Bajanne, Moderator

[lmunchkin]

Hello & Welcome to IHd. People on here will be very helpful!

lmunchkin   

[jbeany]

 

You'll find lots of good info, and lots of inspiration for anyone who wants to continue to work while on D.  We've got members on D who are teachers, IT techs, film directors...the list goes on.  It is much easier to work while on PD or home hemo, so you are already headed in the right direction.  Start reading in the home D sections - you'll find all kinds of info.  If you have a question you don't see already answered, don't hesitate to post it.  (It's sometimes hard to find stuff with the search engine, so we repeat questions and answers sometimes, but no one minds!)

Welcome and good luck to you!

jbeany, Moderator