I'm new to this site

[PD Wife]

Good Morning!  I just registered for this site yesterday and have been browsing all the entries.  This is what I've been searching for the past few weeks - somewhere online to go and find people who understand what my husband, H.D, and I are going through.  He has been on PD for 2.5 years and did very well until about a year ago when he just seemed to be getting tired and weak.  We finally found out last Sept. it was depression.  Starting last October he has had one setback after another:  an infected toe that took 3 months to heal, vomiting, weakness.  His nephrologist finally put him in the hospital April 16th after I called the social worker in hysterics, asking if this was the expected progression of his disease and treatment.  In the hospital it was discovered that he may have Parkinsons disease which was exacerbated by the reglan he was taking for uncontrollable vomiting.  Unfortunately, the day he came home from the hospital he started having severe abdominal pain and had to go back due to peritonitis! (which he got in the hospital)  They gave him vancomycin and on June 5th he came down with c.diff - terrible vomiting and diarrhea that continues off and on to this day.  I have had to take a leave of absence from work and it looks like I won't be able to go back because now he can't check his own blood or draw up his insulin shots and I have to help him do his PD.  That plus mentally he seems to fade in and out.  Now the neurologist thinks he may have MS but he can't have an MRI with contrast and he's refusing to do the lumbar puncture (can't say that I blame him).  That's it in a nutshell.  About a year ago everything was fine and now I don't know what is going to become of us. There doesn't seem to be much in the way of financial assistance so we will probably lose our home in about a year.  Well, this is too long.  I hope someone out there will read it and at least be able to commiserate.  Thanks for listening.
PD Wife.




EDITED: Moved to general discussion - Sluff/Admin

[flip]

Welcome, Kate. You've sure been through a lot. I'm sure you'll find help and inspiration on this site. Many have been through exactly what you are going through.

[pelagia]

Oh Kate, I am sorry to hear about how many trials you and your husband have faced.  I hope that you will find friendship and understanding here as well as many who have experience that will be of benefit to your situation. 

[Ken Shelmerdine]

Welcome Kate. I'm so sorry for everything you and your husband are having to go through.  Can you claim any kind of welfare benefits? It seems so drastic to have to give upyour home.

[rose1999]

  Kate, you will find a lot of support here, we may not always have answers but we always have sholders to lean on. 

[lola]

 

[monrein]

  to IHD.  I hope we can be a place for you to find understanding and where you can feel free to rant, complain, unload or whatever you need to do.  We've all been through more than our share of travails and we know that caregivers like you go through them with us.

I'm so sorry that your life has been turned upside down by illness and that it's all still unresolved.  Please remember to take care of yourself too.  Here's a big hug for you. 

[peleroja]

Welcome.  We're here to listen and help.

[KICKSTART]

Firstly Welcome now im not sure whereabouts you are ? I know things feel out of control right now , but take a deep breath , you have found an excellent site here for support and advice. If you let us know where you are ,there are some excellent people on here that should be able to help you or tell you where to get help with benefits and such.
If you husband has depression and believe me its quite common with renal failure then there are some good tablets out there to help. It is also common that renal failure makes a person become less 'sharp' shall we say , so that might explain some things going on with him ? Whatever you are worried about , just ask ..someone will always try to help you on here !

[stauffenberg]

You don't mention how old your husband is, which could be an important factor in all these problems.  Generally, the combination of diabetes and renal failure results in much worse outcomes than with dialysis alone.  Don't be too ready to ascribe all the tiredness to depression, since the overwhelming cause of tiredness among dialysis patients is anemia, and depression makes a very small contribution in comparison with low hemoglobin levels.  The neurological symptoms your husband is experiencing, from mental fogginess to Parkinson's, and from Parkinson's to MS, could all be due to the neuropathy caused by either diabetes itself or renal failure or both, given that exact diagnosis of distinct disease entities in neurology can be very difficult, especially by non-specialists like nephrologists.  If a stubborn infection like your husband's toe problem occurs again, ask if he can be treated with hyperbaric oxygen therapy, which is quite effective in cases like that.

The best solution, if at all possible, would be to try to find a transplant for your husband as quickly as possible.  Are there any friends or relatives who could donate a kidney?

[PD Wife]

He's not a candidate for a transplant due to vascular problems, not a hemo candidate for the same reasons.  oh, and he's 57 years old.

[flip]

Hopefully, he's already getting Disability, Medicare, and any state benefits that might be available. I think I would probably get a second opinion, preferably from a gastroenterologist.

[PD Wife]

He sees a nephrologist (of course), neurologist, gastroenterologist, ophthamolgist, podiatrist, and was seeing a psychiatrist for a while.  I wonder why they are so reluctant just to say it's neuropathy?  He's been through so many tests and procedures that he doesn't want to do any more.

[stauffenberg]

I know that feeling of having your life become so thoroughly medicalized that there seems to be no time or energy left just for living it. 

Since a transplant is not possible, have you considered Benfotiamine?  The problem with the deadly cocktail of diabetes and dialysis is that dialysis accelerates the development of the diabetic complications, and on PD, the dialysate itself elevates blood glucose and blood lipids, neither of which are healthy.  However, the German drug Benfotiamine has been found to block the metabolic pathway by which high blood sugar is transformed into advanced glycation endproducts, and it is these endproducts which are the actual cause of the complications.  The theory then is, if you take enough Benfotiamine to interrupt this process, the complications should never get any worse, no matter what the blood sugar level is.

This is a new area of medicine, sparked by research published in 'Nature: Medicine,' in February, 2003, which showed that Benfotiamine prevents diabetic neuropathy.  It has been followed by numerous research reports since then showing that Benfotiamine prevents diabetic nephropathy and retinopathy as well.  It is also an extremely safe drug, since the package insert from the version manufactured by Woerwag Pharma states that "no adverse reactions have ever been reported from this drug" and that "in case of accidental overdose, no medical intervention is necessary."  I used it in a very high dose (1500 mg/day) for the last two years I was on dialysis and had no adverse effects from it.

You can buy it at a number of online sources in North America, or directly from any German pharmacy which has an online service.  I always buy mine directly from Germany, since all the research showing the benefits of Benfotiamine has been performed with that version of the product, and since you are guaranteed to get the right product properly made.