I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Grumpy-1 on December 09, 2011, 04:28:58 AM
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I stumbled across this forum while doing some research on a related subject. I'm glad I did. While waiting for membership approval, I've been roaming around reading what others have posted and plan on adding my two cents worth in many of the catagories.
About me: My name is Jon - but go by "Grumpy". I live in Fredericksburg Virginia. I have been married to the same wonderful lady for 40 years and have 3 grown girls and 5 grandkids. All live in close by and we are blessed to get to see them all daily or at least weekly. I'm 60 years old and have been on dialysis for 2 years.
I had known that my kidneys were working their way toward failure for at least 10 years, but the doctors would never (or could never) say when it would get to the dialysis stage. Two years ago I had a knee replacement surgery and during surgery my kidneys decided they had enough and quit. So, coming out of knee surgery I ended up with a cathater in my chest. Shortly after that I had a fiscula created and a PD access tube inserted. After the healing time passed, I changed over to PD and have doing that since.
For me, PD works great. I'm still working and able to do two exchanges at work. At first I was very leary of avertising my kidney failure and being on dialysis. I felt like others would treat me different and that I was now an outcast. Over time, I've accepted this and so have my friends and co-workers. They know when the office door is shut, I doing an exchange. There are a few that have come to the point were my exchange doesn't bother them and they'll knock and come in. I've accepted that and now comfortable with that was well.
I'm also a biker. Ride a Harley Davidson. I've adapted PD to biking as well. Both for work and riding, I have created a exchange kit which has all the things I need to do an exchange or exchanges. So all I have to do is add one or two dialysis bags to the kit and I'm off to work or out on a ride. For bike trips longer than one day, I have a small trailer that I can pull with the bike and I'm able to take my cycler and enough supplies to last a couple days. I have not let this put a damper in longer bike trips either. I've been on week plus trips. So most of those, we (the group I ride with) end of taking a vehicle and bike trailer (in case someone breaks down) so I can put a few supplies in the vehicle. Since out rides are well planned out, I'm able to send letters to the dialysis supply supplier and have them send the needed supplies to hotels in advance. I'll be damned if I'm going to let this stop me. While it has slowed me down (more about that in some other post), it will not stop me. The group I ride with is great about me having to do an exchange(s) while on a ride. It just gives them more time at sip their beers and enjoy the company while I head out to the bike and do an exchange.
Well, enough for now. I'm sure you will get to know me better from the other posts. Thanks for reading and I'm happy to chat about my situation with anyone who wants to.
Grumpy
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Hey there Grumpy, and :welcomesign; Glad you found these forums. Hope to see you around often.
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Hi Grumpy (though you don't sound so Grumpy to me) and welcome to IHD! :welcomesign; You've got a great attitude and I admire you for not letting D be your life but rather your means of having a life. I'm looking forward to seeing your posts!
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:welcomesign; Grumpy Jon!
;D
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I agree with Looney. You don't sound grumpy at ALL. I would love to know how you got that moniker! :rofl;
Welcome to the group!
Aleta
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So glad to meet you and am glad you joined us.
Hope you continue to read this site. :sluff;
Rerun, Moderator :welcomesign;
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:welcomesign;
Good to see another Virginian on this site.
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For those who asked - why the nick name Grumpy. That was given to me by my family - wife and three girls quite some time ago. Most folks don't think I'm grumpy, so I say just ask my wife. :2thumbsup;
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hi there grumpy... welcome!!! :welcomesign;
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Grumpy,
Welcome to the group!
I find your comment about the knee replacement interesting, I need both knees replaced and I am at stage 4 kidney failure and have put off the operation because the doctors say there is a chance I may loose kidney function. But I have decided to wait, and your situation just reinforces my decision to do so.
Hope you are doing well, and have a good holiday.
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Mr B. I think if I had to do it all over again, I would have waited on the knee surgery as well. Not to put you off on the knee surgery. My surgery went well. At least the surgerons where happy with it. After two years I still don't have all the feeling back in the knee and putting weight (ie kneeing down) still hurts. My other knee is headed down hill as well, but I'm going to hold off on that for as long as I can.
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Sorry for posting late, but Grumpy, when you talk bikes, you are talking something I understand very well. When you talk Dialysis, that is my husband.
He use to be a biker too, but due to all his medical issues, he had to stop driving all together. When he was diagnosed in 2004, the hardest thing he went threw was giving his Motorcycle up. But I still have mine!
Im sure you will agree, once its in your blood, you are hooked!!!! I am so proud of him, cause that had to be hard for him to give up. But he did, and I offered to get rid of mine too, but was so thankful when he said not too!
Well back to the original post, WELCOME Grumpy Jon! So glad you joined IHD. These people are wonderful!
lmunchkin
:kickstart;
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Hi there. I'm really glad that you have become more socially comfortable with dialysis and that you don't feel like it is something to be ashamed of! So many people have all kinds of medical problems, and trying to keep them secret adds such a burden. If you give people the chance to understand, most of the time they will.
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lmunchkin - Sorry to hear your hubby can't ride any more. You are right - once in your blood - you are hooked. I'm beginning to worry that I might not be able to ride before long. I'm having problems with physical strenght. Since going on D (two years now) I have lost at least 50% or more of my leg strenght. It is getting very hard to get up from a chair (in fact, I have to use my arms to lift more than my legs) Going up stairs is also becoming an issue. So, I'm worried (as well as my wife) that I won't be able to hold the bike up at stops.
If I may asked. What is BKA? your profile indicates that in 7/2009 your hubby lost his toes part of his leg to BKA. Thanks Grumpy
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Hey Grumpy, hope you are better today! BKA is "below knee amputation". But he gave the bike up cause of his eyesight. It is very poor. He has seen a specialist for it and they have tried different things with meds and lazer, but nothing has worked. He no longer goes anymore to the specialist and just lives with it.
I know you have been Dialysising for 2 years, but wonder if you may have some circulation problems in your legs. What caused your kidneys to fail? Sorry if you mentioned it and I may have missed that.
Oh I hope so much that you can hold your bike up. You need to find out why your strength has left your legs. I know that when hubby went In-Center for 3 days a wk. He would be drained after each session. It was so awful to see him go through that. But doing him at home has really helped with the "washed out" feelings you hear people talk about. He has been Dialysising at home now for about 6 of the 7 years, and it is so much better on both of us.
Would you and your wife consider doing it at home? It takes commitment but I believe in the long run, it is soooooo much better than InCenter. But it isnt for everyone. Some here are even doing home D. all by them selves! Grumpy, you might consider this, cause as a fellow biker, I bet you don't like rules and regulations of your center. I just think that if you did it at home, you WILL get better dialysis thus feeling much better!
Man, I hope you can hold on to your dreams & not let this rob you of it. Keep fighting, Grumpy :boxing; :boxing;
lmunchkin
:kickstart;
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OOOOPPPS Grumpy, just read where you are doing D at home!!! Im dingy like that! Sorry!
lmunch
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:waving; Welcome! So glad you found us and joined! What a shocking way to wake up from surgery. :o
BTW, our grandkids call my husband "Grumpy". :D
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lmunchkin
To answer some of your questions. "but wonder if you may have some circulation problems in your legs. What caused your kidneys to fail? "
Yes - have poor circulation in legs. Most the time it feels like my feet are "asleep" - you know that tingley feeling. I'm going today (Dec 22nd) to get a veinus mapping of my legs - hopefully that will determine how much blood flow my feet and legs are getting. I do note that my feet have never turned dark or black like I would think if the blood flow was too bad. I've also been to a nerve specialist and had my legs tested for reaction to electrical stimulus and such. The results were inconculsive.
No one said exactly why my kidneys failed. In my intro, I said that they had been going down hill for a number of years, but the Doctors could or would never say when they would quit. I'm guessing being put under for the surgery was the final factor. They just couldn't handle the meds that knocked me out.
May I ask you a question as well? You say hubby has been on D for 6 - 7 years. Is he on a transplant list? if not, is there some reason why? if he is, does it take that long to get a transplant? I was told 3-5 years for me.
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No I dont mind one bit, Grump. We went and tested but they determined he was not eligible due to too many health complications. He had said before we tested that he did not want a transplant whether cadaver or live. I wanted him to get tested anyway, just incase he had change of heart, but they said he was not a good canidate. He would also need a pancreatic transplant if he had been eligible. His vascular system just wouldnt cooperate with a donated kidney. It would not have a chance.
But doing Dialysis at home has really been quite well for us. Once you get use to it, it really is not that bad, IMHO. I can't say that when we first started. Quite overwhelming to be honest. We were constantly snapping at one another, because of this disease, but we finally realized that it would destroy us if we let it. Our love was much stronger than this "CRAP", so we settled down and just eased up on the tension, and trusted in the Lord & this site, and now we are closer than we ever were before.
Dont misunderstand, we have always been very close. We were inseparable, but this disease about did us both in. Thanks to NxStage (yes) we found that we can do and go alot more with this portable machine. We went to Panama City Beach for 2 weeks and just relaxed and enjoyed each other & had fun!! Hadnt been anywhere since 2003! Oh yea, we were due.
Crumpy, do you think you may have diabeties? That can create havoc on everything in your body, and is the #1 cause of Kidney Failure. I think the 2nd leading cause is High Blood Pressure. I know the diabeties is why J has all kinds of vascular isssues, and is the reason for all of his amputations.
So what did the vien mapping tell them today? Do they have a determination yet?
lmunchkin
:kickstart;
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lmunchkin
Thanks for the information. Glad you see you could get away for a vacation. Fortunetly, I'm able to travel quite a bit. Have been to Key West for a bike trip in 2011, Daytona for Biketoberfest in 2010 and from there when to Disney World for a week (work related), going to Myrtle Beach in 2012. My wife and I got to go to Nashville Tn for my work in 2011. All the trips were planned well in advance and I had D supplies sent out to the hotels we would be staying at. The only issue in traveling for me is flying. Not sure how to handle that yet.
I was tested (neg) for diabeties just a while back - but beginning to think I should get retested. Thanks for the reminder.
Veinus mapping completed yesterday, but I won't get the results back until I see my family Dr. Normally, if there is a problem that shows up fromt the tests, they will call me. So I go on "no news is good news".
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I think it is awesome that you and the little lady travel. We use to alot! Let me know what they find out on the maping. By the way, we live in Nashville (a little South). Would love to meet you both if possible. PM me for more information. When do you think you will be coming, cause 2011 ends in another week my friend!!!
Keep me posted Grumpy and hopefully we can meet up!
lmunchkin
:kickstart;
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Welcome to the family, Grumpy Jon! I used to love riding but haven't been able to for a while. (I confess, I rode a riceburner!) My husband and I are thinking of getting a bike and having a conversion kit put on it. There is a place near us called Voyager that does them. And we did go into the local Harley dealership and they told us about it!.
Anyways, welcome and I look forward to seeing more of your posts!
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:welcomesign;
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CebuShan I have a fellow rider that has a Voyager kit on his bike. Makes it a lot easier for him at the stops. Not a bad looking kit either.
lmunchkin Thanks for the invite. Some fellow riders are Elvis fans and so we were thinking about doing a ride to Nashville - maybe late 2012. Will let you know. If you are able, it would be nice to have someone from the area show us around - ie the best rides, the best eats, etc.
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Im your gal. Just holler and we shall plan it. If you and your wife need a place to stay, you are welcome to come stay with us! Do you trailer your bike or ride it?
lmunchkin
:kickstart;
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lmunchkin
Thanks for the invite to stay. I try to ride as much as possible. I do have a trailer I pull with the bike. It can hold the cycler and a few days supplies plus a few clothes. For longer than over night trips, I will have supplies shipped to a hotel.
LoL Grumpy
PS how is Hubby doing?
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Hubby is fine, thanks for asking! I have PM'd you about your coming. Please check it before you leave.
lmunch
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A friend of mine, who's also on dialysis, used to ride a Harley. He had to give it up a couple of years ago, because he had cancer in his spine, and his back just isn't strong enough for it anymore. What he did was sell his Harley, and he bought a PT Cruiser convertible that he only drives in summer and stores in the winter. It's a nice alternative if you find you can't ride anymore. You still get the wind in your hair and the bugs in your teeth.. *L*
My mom's bosses are Harley riders. They used to go all over with the bikes, but they don't go as often anymore, maybe to one rally a year, because they're so busy with the store.