NEWBIE

[Marley]

Howdy from Idaho

I'm not the one getting dialysis in our house but my husband has been on hemo 3 years this October.  I noticed this site has a thread for caregivers--cool--and thanks!!
My hubby has glomulernephritis and that was the reason for his kidney failure---that and a year of interferon to treat metastatic melanoma in '98.  In my opinion the interferon was the last straw for his poor kidneys.
His arm was set up for dialysis in the usual fashion but he had two failures and had a bovine fistula put in.  His neph recommended PD and sent him to a surgeon who placed the cathador.  That's when the problems began.  He was never able to do PD because at first nothing was coming out or in the cathador.  After tests, it was confirmed it had slipped between his bladder and whatever else lies next to it, so the surgeon went in again to reposition it.  Still nothing happened and then he began to develop serious pain in his belly.  After testing the fluid, they found he had staph in his abdomen and the test results stayed on the docs desk for almost a month!!!
Can you say lawsuite??  BUT, my hubby is not that kind of man, he is loyal, kind and very honerable.  Once we found out we would have to sue the whole clinic and not just the one doctor, he decided not to go that route and now they treat him very well at clinic.  Anyway, once he got over the staph infection, he had the surgeon take out the cathador, he wanted no part of PD!!  Who could blame him!! 

Now he's developed a fistula annurism, the inside of his right elbow is raised a good 4" above his skin!!  He is scheduled for surgery next week and they are (finally) going to disconnect the blood flow to the annurism, set up his left arm for dialysis and put in a pic line so he can continue dialysis until his left arm matures. And we thought cancer was hard to deal with!!!  Since starting dialysis,he has developed perifial (sp?) neuropathy, which is so painful his doctors sent him to a pain clinic.  His pain is much better under control now.

We are both on SSDI; him bc of the ESRD and me because of rheumatoid arthritis--among other aquired diseases so we help each other.  If I'm having a bad day, he us usually having a good day and can help me out---visa versa.  It was a challenge figuring out what the &%&* to feed him, since he loves everything on the "bad" list, but he's a tough old hippy and so strong, I don't know how he keeps going!!  I love him dearly and would do anything for him!!  We have continued to be best friends and there is nobody on earth I would rather spend my time with than him.  He still makes me laugh and can carry on very interesting conversations.

I am feeling a whole lot better since I've started on a new drug called Rituxan for my RA, and Arava; good enough that I think I can handle a part time job....you should see the mountain of medical bills we have between us!!!  The problem with that is I am scared to leave him home alone.  He also has CHF (congestive heart failure), the artery behind his heart is now 100% blocked and because of the location, surgery is too risky.  It's almost like he is a ticking time bomb, which scares the hell out of me!!  We both have medicare and before he startd dialysis, I went to the health and welfare office and switched our coverage---I had medicaid but told them to give it to him.....We had QMB (qualified medicare benefitiary) medicaid which allows only ONE person per household to be covered, even if both persons are disabled---can you believe that!!!  He just lost his medicaid because we make (22.00) too much money each month.  I'd like to see "them" try and run a household on what we make each month!!!   

We have 4 grown children and 10 grandkids, who light up our lives.  Grandchildren are our reward for surviving those teenage years!!  We have one dog and a Senegal parrot to keep us company.  He plays guitar (when he feels good) and I'm a quilter. 
That's pretty much it for now......

This is a wonderful site and a BIG thanks for the guys/girls who started it---I love the name!!!

Marley

[Marley]

Me again.  I wanted to add my hubby is not on the transplant list due to his cancer history.  His neph told him he would try and get him on, but hubby does not want a transplant.

[kellyt]

Welcome Marley!  What a wonderful introduction.  You will find this site extremely useful.  The people here are wonderful and full of knowledge.  You're a wonderful and strong woman.  I can't wait to get to know you better.  Tell your husband to join us, as well!     

[rose1999]

Hi Marley, what a dreadful time you've both had, but you'll find a lot of love and support here and you sound like a strong couple.

Just have to tell you that you gave me a laugh, just for a minute I thought it was the parrot that played guitar

("Senegal parrot to keep us company.  He plays guitar (when he feels good)") I thought, what a talented parrot!!

[willieandwinnie]

Marley. What a wonderful, informative introduction. We love those because it gives a a real sense of the folks behind the name. Bless your heart and your husbands. The both of you have been through so much together. That's my hubby Len and I, always together. Welcome again to your new extended family. We have so much information to offer and please ask questions and have your hubby chime in, if he feels up to it. Keep posting. 

[Razman]

I'm glad that you found us.  There are so many people to share with and to help answer questions.  Please stay in touch.

[paris]

  Marley!  Great infro!  I like your spirit. You have found an excellent site, both for information and especially for support.  It sounds like you are each other's caregiver.  I feel that way with my husband--we take care of each other,too.  So glad you found us.

[Marley]

Thanks for all the welcomes...............Rose---I just re-read my post and I can see why you would think I said our parrot played guitar--LOL!!  Maybe I better slow down my fingers.

I can tell this is a wonderful group of caring people here and I can't wait to meet everyone.  Thanks again.

Marley   

[twirl]

here for you

[monrein]

  Marley.  I liked reading your intro and look forward to hearing more about you and your husband  (and of course the pets).

[mcjane]

Hi Marley,
I too thought your parrot played the guitar.     
Love your avatar &  to IHD.

Jane

[Sluff]

Welcome to ihatedialysis.com Marley,

What a rough situation your husband is in but he sure is lucky to have you in his corner. I've said this many times but I'll say it again, Thank God for the caregiver. It's not that those affected with ESRD can't take care of themselves because many members are alone but for those lucky enough to have a caregiver are truly blessed. It is a tough job. Please enjoy your stay here and visit as often as you need and post as often as you like.

Sluff/Admin

[Bajanne]

Welcome to our community!  This is just the place for you to be.  You will find, as I did, that joining this community will be one of your weapons in dealing with this renal challenge.  We are very grateful to Epoman (Bill Halcomb) of blessed memory who started this site and built it up unselfishly until his passing.  We are not just a forum, we are a family and ready to welcome new ones.   there is very much going on here.  We have loads of information, and also loads of fun (there be crazy people around here, excluding me, of course).  Looking forward to hearing lots from you.


Bajanne, Moderator

[G]

Marley, Marley, Marley. Right-on Darl'n! Since day one of getting diagnosed I have said my part of this kidney thing is easy. All I have to do is get to dialysis, take my meds and follow all the other rules. It's my wife and kids who have the tough part! I can only imagine their worries. I can totally relate to your financial situation. I had almost $4000.00 owed to three differant hospitals. Chicken feed I know. The reason I mention it is to ask if you have considered requesting a "hardship consideration" with the hopsital/doctors you owe money? There is a lot of paperwork involved and some may deny you several times before forgiving the debt. However, as kidney patient/families we have enough to worry about without having to also be threatened by collection agencies! Good luck and keep fight'n the good fight! G

[Ohio Buckeye]

  Marley tro the IHD Family!
Best wishes to both of you.

[Ohio Buckeye]

I too thought the parrot played the guitar.  lol

[monrein]

I think the parrot deserves guitar lessons.  We all seem to think he/she can do it.  Keep his nails long and no pick necessary.

[annabanana]

 

[Ang]

  marley







EDITED: Fixed smiley tag error-kitkatz,moderator

[st789]

You both keep each other company and enjoy it.  $ is 

[oleboy]

keep us update.