I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: irv31 on December 13, 2008, 02:18:09 PM
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Hello all, My name is Irv, I have watched my creatine level go from 1.5 to 4.3 in the last 6 months. I have been a diabetic for the last 20 years. The Doctors say its time to consider dialysis and put my name on a transplant list. I'm nervous to say the least. I dont know if I should wait until the numbers get worse or do something now. A friend recommended this site and it seems there is more to learn here than any clinic or doctors office. I am also now anemic,I have had 5 eye surgeries over the past year and a half. I have drop foot,neuropathy in my feet and now my stomach. The past 8 months I have been throwing up in the mornings,really just dry heaves. Doctors aren't really sure if its from the kidneys or something else. Upper GI series test said nothing was wrong. Pleas help me out there, I feel like I'm my last straw here.
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This will be a great site for you. Much support, and many questions will be answered. The nausea and vomiting are definate symptoms. Ask your Dr. if you can get a fistula placed now. That way, when you are ready for dialysis, you won't have to have a catheter in your neck. The fistula is a permanent access for dialysis, and can be getting ready while you are waiting to start. The catheter is only a temporary access, and can be very annoying, and quite dangerous. Good Luck, and welcome. :flower; :flower;
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:welcomesign;
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:welcomesign; Irv. We are so glad that your friend told you about us. There is lots of information here so make sure you check out some of the older threads. You should see about getting put on the transplant list as soon as you can and if you have family members that are willing to get tested, get them lined up. We are a wonderful support group and we hope to hear more from you. :cuddle;
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G'day and :welcomesign;
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Welcome aboard, Irv. It has been frequently said it's better to start dialysis earlier than later before you get so sick that it would take months to bring you back to "normal." I wouldn't wait. Pick whatever dialysis you want to be on and get started. You will feel so much better when the toxins are removed regularly from your blood. Good luck, and be sure and come back and post how you're doing.
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Welcome to IHD. You have come to the right place to get your questions answered. Please post often. We have a very informed group of people on this site.
Boxman,Moderator
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:welcomesign;
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Welcome Irv. :welcomesign;
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Welcome! We are glad you joined this great group. There will be many people here that can answer any of your questions, The members have expericed so much and will give you great advice. Ask any question. This is a great place to learn. We are really good at giving support, too!! Post often and tell us more about yoursel Our battle cry at IHD is "knowledge is power". So learn all you can from those who are already living with kidney failure. We are here to help. :cuddle;
paris, Moderator
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This will be a great site for you. Much support, and many questions will be answered. The nausea and vomiting are definate symptoms. Ask your Dr. if you can get a fistula placed now. That way, when you are ready for dialysis, you won't have to have a catheter in your neck. The fistula is a permanent access for dialysis, and can be getting ready while you are waiting to start. The catheter is only a temporary access, and can be very annoying, and quite dangerous. Good Luck, and welcome. :flower; :flower;
What nursewratchet said is right on the money. I look forward to getting to know you here.
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Welcome Irv, good to have you aboard.
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thank you all for your support, there is so much i need to learn, can some of you please share with me what your creatine level was when you started dialysis? I spoke to my Dr about getting a fistula now they wanted me to wait a little while longer, in the mean time I have appointments for 3 different transplant places in the New York area. My biggest concern is that I have 2 little children, a son 3 and a daughter 7, this is so scary,sometimes I don't know if I will get to see them get married go to college etc. Don't you ever just feel like giving up all together?
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I started with a creatinine of about 4 and a GFR of about 16%. Everyone's different about how they experience symptoms so the numbers are not an exact guide to when you should start dialysis. The first time around my numbers were worse but I can't remember them now as it was so long ago.
It is scary and of course many of us feel like giving up at various points but when you start to feel a little better you will gain the strength to go on so that you can see those sweet little children grow up. Easy it isn't, possible it is. You will hopefully discover, as so many of us here have, that you have a hidden reservoir of strength within you that you had no idea existed.
We are here to help you find and recognize this courage and to encourage you along the way. It can feel horribly overwhelming but if we can do it, you can too.
:grouphug;
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thank you Monrane, im trying to be optomistic and this site helps, I guess with the holiday time and so much going on it just seems so gloomy, I lost my Dad,aunts,both grandmothers to complications from Diabetes so, its hard to look at the bright side right now.
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Hi Irv. I am new to the website too. My situation is a little different in that I have acute kidney disease. An immune system problem. Now I am at a 4. Although I hope to put off dialysis as long as possible, I am going in this week and have a fistula put in my arm. Personally, I would rather have a unused fistula in my arm for life than have to go in for an emergency dialysis. It is all rather scary. At first I felt devastated by the kidney problem. After about three weeks, I downgraded feeling devastated to looking at it as a major inconvenience. But manageable.
I don't have any of your symptoms so your situation is different. I have attended education classes at the dialysis center. They were free on the recommendation of my kidney doctor. I watch what I eat. So not only is the diabetic diet needed but also restricting salt, potassium, phosphorous and protein. Potassium is the hardest to control, cause it seems it is in everything. You are not alone. Mellow :flower;
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Hi Mellow
I think Im leaning towrds the fistula for now as well, I htink part of me keep shoping I will get better and not need anything at all, dumb huh? Are you also considering a transplant?
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I would highly recommend having the fistula surgery done as it will need a while to mature. Three months isn't unusual although it depends whether it's in the forearm or the upper arm.
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Hi Irv,
Yeah, I keep hoping everything will turn around. Maybe they made a mistake? Slim to none chance of that since I had a kidney biopsy. My only strategy for putting off dialysis at this point is too watch everything I eat and exercise. It is the only power I have. My doctor doesn't even want to discuss a transplant at this point. But he does want the fistula in place. It takes anywhere from 2 months to 4 months to be ready for use after the out-patient surgery.
Maybe because you have young children, they will put you at the top the list for a transplant.
I read where the famous writer Mitchner lived to be 90 on dialysis. Only reason he died was he took himself off dialysis. Guess he figured 90 was old enough.
Wishing you the best. Mellow
:flower;
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Hi Irv,
Yeah, I keep hoping everything will turn around. Maybe they made a mistake? Slim to none chance of that since I had a kidney biopsy. My only strategy for putting off dialysis at this point is too watch everything I eat and exercise. It is the only power I have. My doctor doesn't even want to discuss a transplant at this point. But he does want the fistula in place. It takes anywhere from 2 months to 4 months to be ready for use after the out-patient surgery.
Maybe because you have young children, they will put you at the top the list for a transplant.
I read where the famous writer Mitchner lived to be 90 on dialysis. Only reason he died was he took himself off dialysis. Guess he figured 90 was old enough.
Wishing you the best. Mellow
:flower;
aaaahhhhh.......no. That's a sweet thought, though. :flower;
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Hi
Well I'm off to Cornell medical center in New York City, to have my first meeting in the transplant clinic, I'm not sure what to expect, but here goes, Irv
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Good Luck! :bandance;
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:thumbup;
Wow. That was fast. Good Luck.
Best Wishes,
Mellow
:flower;
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GET THE FISTULA!!!!! If you never use it, GREAT... If you need it and don't have it :banghead; This will all work out. Get the fistula and be best prepared. Why would your Dr. ever discourage that?
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Welcome to our community! It is great to have you with us. I know that this site will be one of your weapons in dealing with this challenge. You have already received so much good advice. This is more than a website - it is a caring and sharing family :grouphug; So stick with us. Keep reading, keep asking, keep posting. Let us know how your session went.
Looking forward to hearing from you :flower;
Bajanne, Moderator
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You guys are so supportive its amazing Ive told my family and friends about this site and they are all joining so they can see what Im going thru and ask alot of questions, I go to Cornell Medical Jan 6th,Irv
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Good move Irv and we look forward to meeting your family and friends too.
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We look forward to meeting the family, Irv!
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Hey Irv, welcome.
Ditto getting the fistula, and start pushing now for home hemo dialysis. You will probably want to go on dialysis before you transplant.
I have diabetes as well, and I am on the list in Seattle. I have kids about your kid's age, and I know how sad/frustrating/scary that can be.
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Irv, that is wonderful that your family is interested in joing and, more importantly, learning about your struggles! Before joining this site I knew no one personally with kidney disease or who was or had been on dialysis. I myself knew nothing about the disease or the struggles to come. Bless them and bless you! This site is great! :clap;
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:welcomesign; Irv
i wish you well in your journey ahead, when to get a fistula is the $64,000
question, you need to be guided by your neph who should go by your bloods and your general well being.
remember information is power and you can always get a second opinion.
get the fistula earlier rather than later as it takes 6 weeks too mature and too be able to use :thumbup;
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Hello and :welcomesign; :waving; from another diabetic who has the eye problems, neuropathy, and a few other things wrong.
I suggest getting something done sooner than waiting till something gets worse. That's my experience with diabetes and it's complications.
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Hi Irv and welcome. I am due to start dialysis next month and I have been putting it off for two years. I am afraid I am a bit stubborn and I am not enrolled in the very sensible school of thought - start early! All in all, I don't feel too bad. The nausea is a little irritating sometimes and the anemia is not great but is controlled with infusions and EPO. You will get a lot of support and knowledge here. I think everyone goes through the same thoughts as you are at the moment - as everyone here knows, I REALLY went through it. But after a while you come to terms with the changes you are going to be experiencing. Everyone here is absolutely terrific. The advice is invaluable and people like Kit, Zac, Monrein - everyone in fact, are an inspiration. Best advice I can give and it has been a great help to me over the past two years is to stick to a good diet and exercise regimen. Do everything that will maximise your remaining kidney function. Blood pressure is really important. Get blood pressure medication if your pressure is anyway high and cut back on eating a lot of salt. Try and keep you stress levels down and remember, of all the diseases you can get this is one of the best. There is at least an alternative there to keep you alive. One of the best ways to keep your stress levels down is to get your fistula in place ASAP. Just tell the doctor you want to have it done now. It will give you a much greater sense of security that it is there if you need it. As I said, mine has been in for two years now and has not been used but I feel so much better knowing it is there if anything goes wrong suddenly. I have had many family members with renal disease and most of them have lived to a good age, others weren't so lucky but my Dad died at 77 and his sister who had a transplant was well into her 80's and they had renal disease most of their lives. You need to take each day as it comes and try not to look too far into the distance. Take care of your health and fitness and don't waste this time when you are free from restraints worrying about the future problems. When you have to cope with it, you will. :cuddle;
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Thanks lucinda
I just got out of the hospital , I came down with Pneumonia and had a congestive heart,ugh, I'm home now but i still feel weak, my creatinine level is still hovering around 4, Dr says my kidneys are around 20 percent, I wish I had an answer for everything but I don't, thank for all the support, Irv
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Hi Irv,
I was diagnosed with IGA Nephropathy and hyper tension 10 years ago with a kidney function of about 20%. My renal Dr. prescribed blood pressure medication and which stabilised my kidney function which remained at 20% plus until late last year when it shot down to 8%... I had a Tenchoff cathater inserted and went on to Peritoneal Dialysis 4 weeks ago.
I have been fortunate that I have no other complicating diseases like diabetes and am otherwise quite healthy.
From my point of view, while there is something that can be done about removing the impurities out of your blood the sooner the better.
With regards to the fistula... Due to my location and the fact that there is no hemo clinic here they didn't give me one but I would take the advise from others in a similar situation to yourself (and your doctors). It may seem daunting at first but I'm sure you get used to it and you also have to consider the alternative...??
Lucinda offers good advise re diet and the resources on this site are fantastic.
I hope you are feeling better
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Sorry to hear about the hospital stay. There is a pneumonia shot you can get. I had one several years ago and so far so good. I guess I don't understand your doctors reluctance to recommend you get a fistula. I had the fistula put in about 3 weeks ago. They put in two. One at the wrist and one near the elbow. Something to do with my veins probably not developing at the wrist area. So probably just an ugly scar there. However, the surgery was simple and all my activities are back to normal. Can do yoga poses, lift weights, play pickleball, and anything else that involves my arm strength. Having the fistula makes me rest easier knowing that in a couple of months if I do need dialysis I will be ready.
I hope diet and excercise will keep me off dialysis forever but that may be wishful thinking. I monitor every bite of food that goes in my mouth for carbs, calories, protein, sodium and postassium. I would probably eat slugs if I thought it would help. Our situations are differenct in that you have chronic failure while my is acute. Caused by my immune system attacking my kidneys. My kidney biopsy showed my kidneys 85% scarred. Dead. I do go out to the mall every couple of weeks to Brookstone and sit in one of their $4,000 massage chairs for free for 15 minutes. And I am looking into reflexology (foot massage) to stimulate my kidney and immune system function. So far my creatine has reduced from over 7 to less than 3 in four months. However life seems to be a crap shoot. So who know what is really going on or to happen.
Since, I don't have any expertise to offer all I can say is what I am doing and maybe give someone a new idea that may or may not work for them.
Good Luck.
Mellow
:flower;