New - but not on dialysis

[houndawg]

Hi,  I'm not on dialysis nor do I have a kidney problem.  My husband is ESRD.  I discovered your board just this past week while trying to find answers for his problems.  Maybe I'm just a witch but I find the dialysis team we work with has not been helpful on working out problems nor on telling us our true options.  One of the things that disturbs me is that we are not encouraged to make friends with other PD patients.  I'm in desperate search for answers and hope you will be of help.  I also find this board encouraging - which my hubby needs.  I'm hoping when he comes homes home tomorrow from rehab he will be join your board.  It's the first thing I'm going to show him.

Briefly, he has been on dialysis since 12/08.  First, hemo then on to PD that following May.  He has been on PD until just this past June when we elected, upon the advise of our family physician, to try hemo again. My hubby is 71.  He is on the transplant list at Hershey Medical Center. He has been a diabetic since his late 30's with good control until PD. He was born with only one kidney which was discovered in his 50's.  The kidney  faired him very well until 2008.  We retired near Gettysburg, PA.  We love the life here but hate the bad medical facilities.  His hobby is ham radio contesting.

  His life on dialysis has been a down hill battle on energy and his quality of life.  We had envisioned his being able to live a fairly normal life with PD but it hasn't worked that way.  Anytime we bring up a problem with his dialysis the doctor says "well if you are so unsatisfied we can put you back on hemo and forget it."  OR " your numbers look great you can't be having a problem.  Are you depressed?  Want to try depression meds?" At first we were told "Your body has to adjust.  It takes a while."  After two years that one has finally been dropped from the list of standard answers.

 We've been hanging on to the hope for a kidney but recently things have become very depressing.  Dick was recently hospitalized from June 9th till the 21st with no answers.  He was sent to a rehab facility to help build strength.  Hopefully, he will be coming home tomorrow and have in home therapy before going back to regular PT as an outpatient.  Our personal physician felt that Dick should try hemo for a trial period because possibly the PD was not working efficiently for him.  He is very tired, having problems with clear thinking, has his days and nights mixed.  The list goes on.  The dialysis doctors  opposed but gave no good reason, nor could they find any answers other than "dialysis patients are expected to go down hill.  They have renal failure."  Right now I'm sure he is physically fit enough for a transplant.  Any help or encouragement you can give would be deeply appreciated. We would go directly to Hershey but it is too far for dialysis.  Unfortunately they will not interfere with local doctors as to treatment prior to transplant.
Thanks,
Houndawg  

[willowtreewren]

My heart goes out to you houndawg!

 

You must be feeling so frustrated with your husband's doctors! 

It does sound as though your husband is not getting enough cleansing, despite the numbers. Hang in there!

And welcome to IHD! 

Aleta

[Ang]

    Aboard


all i can suggest is a second opinion

[MooseMom]

Hi Houndawg.  My husband and I visited Gettysburg back in April; it had been our first time to that part of the country.  We found the Battlefield and the surrounding area to be fascinating.  However, since reading your post, I'm glad I'm not a dialysis patient there!

I am very, very concerned by the dialysis doctors' view that "dialysis patients are expected to go downhill."  That is certainly true if their doctors have such low expectations.  I suspect they are not going to do their best for patients that they "expect to go downhill."  That's just really creepy, not to mention terribly inhumane and unprofessional.

A lot of people who do PD love it, but there are others for whom it just doesn't work.  Your husband may be one of those people, and he may very well do much better on hemo.  I would encourage you to do some research on home hemo which he can do more often and more gently.  The downside is that you are doing dialysis yourselves instead of having it done by trained staff, but unfortunately in this country, to get really good dialysis, you need to dialyze for a longer time, and you can't get that longer time in a clinic.  From your post, I am not sure you could really trust the opinion of hubby's dialysis docs/nephrologists; it sort of sounds like they've given up on you or just can't be arsed.  You do, however, seem to trust your personal physician, so perhaps that could be a place to start.  There is also a good website www.homedialysis.org that gives good info. 

I know Gettysburg is a small town, so you may not have a lot of choices, but could you go to a different clinic?  Is there even a different clinic in your area? 

Anyway, do a bit of research here on home hemo and NxStage (which also has a website www.nxstageusers.com), but if you have a view to doing hemo in clinic, there's lots of information about that here, too.

I know it must be so very hard to witness your husband's decline in health, but I am hopeful that a new modality will do the trick.  I would first, however, seriously consider talking to a physician you trust.  And please do invite your husband to join us; we have a lot of experience in dealing with the technical and emotional turmoil that comes with kidney disease.

[looneytunes]

Hello houndawg and welcome to our community.  Like you, I am a caregiver to my husband.  You will find a lot of useful information here as well as support for yourself and your husband and sometimes a good laugh or two.  Glad you found us!   

[Bajanne]

Welcome to our community, houndawg!  So glad you found us!  I am totally amazed at what some people have to put up with where centres and doctors and workers are concerned.  Where is the old idea that medical practitioners are to do their best for the best outcomes for their patients? Anyway, feel free to rant and rage and vent over here.  That is what your IHD famly is for  along with information, support and encouragement.   We are looking forward to your husband joining us as well.  And you can have a look at our Caregivers' section.
Keep reading and please keep posting.




Bajanne, Moderator

[jbeany]

 

"Expected to go downhill?"  That's outrageous!  It sounds to me like you should trust your gut instincts - get him off PD and onto hemo again and see if there's an improvement.  And by all means, run for your lives from that doc if at all possible!

I hope we can help you both as you deal with this and get some solutions for a better life.

jbeany, Moderator

[Poppylicious]

  houndawg.  So sorry you're having to go through this.  The doctors sound like a bit of a nightmare.

*huggles*

[rsudock]

Welcome and so sorry your hubby's medical team is letting you down. Medical folks half the time can't be bothered can they? Even though we are the ones with our lives on the line...you would think they would have more respect for us?

 A great person to contact about home dialysis is Boswife. She is a caregiver as well, who dialyzes her hubby at home. She has overcome a lot of her fears about needles, to get him better care.

Hang tough and keep fighting. I know your hubby really appreciates it!!

xo,
R

[jeannea]

I'm sorry you're having so much trouble. I'm also listed at Hershey but my dialysis center is in Reading. Definitely push back at his doctors. He deserves good care as much as anyone else. When he checks into the hospital where does he go? Maybe next time go to Hershey. I've gotten really good care there. The coordinators will act hands off but if he's in the hospital he'll see the nephrologists and the transplant doctors and maybe can get answers.  Plus maybe get answers to what's wrong with him.

PD doesn't work for everyone so maybe hemo will be better. I'm not sure how they can stop you from making friends with other patients. When I go to clinic I meet other patients and I could exchange phone numbers with them.

Keep being your husband's advocate. He needs you. And next time he needs the hospital, just make the drive to Hershey. I know the distance can be tough. It was for me last month while I was throwing up. But it can be worth it to be in a good hospital.

[houndawg]

To the person who said you can always meet fellow patients in the lobby and exchange phone numbers - that statement was made about the PD patients.  We really do not get a chance to get to know other patients.  We only go in center once monthly.  Those are scheduled appointments so the patients don't get a chance to interact.  Appointments are scheduled so that few patients even see each other.  The only other person we know in PD we did meet in center one day and exchanged numbers.  The delivery man who deliver supplies can't even tell us where he is going for the  stop, even if it's around the corner.  The other person I know from PD is telling me the same thing we were told by the PD team.  Some of it is definitely not accurate and slanted so that patients don't ask too many questions.  Keeping patients on PD once they are there seems to be the thing - no matter what.  I don't understand it.
Thanks,
Houndawg