draftee: I am curious about what kind of... - Early CKD Support

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draftee

draftee profile image
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I am curious about what kind of creatinine levels people are living with and do they change very much, For instance if you have a 1.5 mg/dl could it rise up to 3.5 mg/dl in a very short time or would it take a while ? Thank you

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draftee
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16 Replies
Bet117 profile image
Bet117

Mr._ K this one is for you!

draftee profile image
draftee in reply toBet117

Hi Bet117

Don't mean to be a pest but it seems like its always something, Started out with a stress test that showed a clogged artery, Had to have heart stent surgery, After that my PSA numbers went out of wack, Diagnosis prostate cancer found after a prostate biopsy, Had to have 42 radiation treatments plus Lupron injections and a pill that made me get hot flash's, My wife teased me about that but we were both grateful for the excellent results, I thought I was home free but then I got a bad stomach ache that wouldn't go away. Went to the doctor, had a cat scan and they found out I had a burst appendix, Did emergency surgery the same day, Spent the next 8 days in the hospital with tubes going in and out but I was sent home and had a visiting nurse for the next 2 weeks, I recouped from that and had a urine test that showed blood not visible to the eye, They wanted to rule out bladder cancer so they went up my p---s with a scope to check out my bladder, There is no numbing and if pain were money, I would be rich after that one, But no cancer found, Then I went for an eye exam and was diagnosed with Macular degeneration in both eyes, The only treatment is to inject medicine into your eye with a needle, Of course they numb your eye first, I am getting those injections now and was going along pretty good until I got hit with this kidney thing, Oh well, Nobody ever said life was fair, Don't get me wrong, I am thankful for how lucky I have been and I know there are a lot of people way worse off than me, But it does seem like its always something,.........Thanks for your ear Bet117........

Bet117 profile image
Bet117 in reply todraftee

Hi draftee,

I am always happy to hear from you. and will always respond...You are NEVER a pest!!!

You and your family have battled many wars with health issues, but the most important thing is as hard as they were, you stuck your feathers up and fought! I think we all wish that life could be simpler, no, all of this is not fair, and there is no " why?? " Your fight and courage is an inspiration to all, especially others who have encountered what you have had to overcome! Remember that and use your knowledge and experience to help lessen the pain of another! I am not an expert, but cardiovascular issues, diabetes and kidney issues are often connected and are genetic pre-dispositioned. The important thing is preventative medicine and steps to try to keep them out of your life. Diet, exercise, even just a 30 minute walk with your wife is key. As far as the Cystoscopy that you encountered, not fun. I had one as part of my diagnosis plan as I have microscopic blood and protein in the urine. My husband is a biology professor who filled me in on the distances to the bladder for men and women, so I can empathize. God forbid you have to have this procedure again, stress to the physician that a numbing medication or sedation is in order as this should not be that painful. The communication between doctor and patient is imperative!! Be it GP, cardiologist, nephrologist, etc. Get answers!

if the doctor is not working out, don't be afraid to find someone else who takes your insurance. Kidney issues are nasty little surprise annoyances for all of us. It knocked me for a loop and my first nephrologist was a decent doctor, but not a good match for me. I had months of stress and strain from that woman until I finally said enough! As . Mr._ Kidney and Orange City have told us all, it can't be cured, but slowed down abd delt with. Alot of vegetables, fruit, watch sodium; 1500-2000 mg of sodium daily, minimize the protein, no red meats or processed foods like cold cuts. Water and minimize coffee, dairy etc. Mr._K gave you sone great sites to read, I have looked at them as well and found them useful. As far as the MCD is concerned, also not fun, but you are here and the needles are not forever. I know.

My brother is a severe diabetic whose diabetes was discovered at around age 38 or so during a routine eye exam when the opthamolgist spotted retinal bleeding. He was sent to his GP that day for indepth diabetes screening. Three years of painful lazer cauterization and a detached retina surgery has put that to rest. Every time he had severe work stress, the vein popped. It ended eventually.

His doctor was outstanding, empathetic and competent. My brother who is my polar opposite personality; nasty at times, had such trust in this man that he thought of him as a trusted friend. Today, it is monitored but the treatments are over.

At 59, he has 20/50 vision in the more severely effected eye but he can see, just knows that night driving is short distances and what compensations must be made. David and I are his only family since mom passed. We have taught him trust and support. Family and friends get you through Let them! ( That includes this girl on the other side of the computer) You will get through this and find ways to compensate.

The important thing is to stay positive and keep your head up! The greatest lesson that I am learning is that chronic illnesses are annoying but the key is dealing with them. Feel free to remind me of that when I get frazzled! Deal? Please remember that you are not alone..

Friends support each other! Reach out!

Stay strong and positive!

Looking forward to hearing from you soon! Okay?

Good thoughts..always! Bet

.

orangecity41 profile image
orangecity41 in reply toBet117

Very good response and is helpful to all of us. You are right, we may never know the "why's". I am thankful for the health I have. My twin brother died from cancer. Many tests am having and glad conditions being monitored and finding them at pre-cancer. (maybe am sharing too much). Life is precious. Thanks for your comments.

Bet117 profile image
Bet117 in reply toorangecity41

Thanks for the kudos! If my thoughts help, I'm glad. Just my feelings. Like others, I too am trying to accept and live with chronic illness. All are different but carry the same fears and concerns. My six month check up is coming up on Feb.6th and I would be lying if I told you that I am uptight about it, but I also know that these things have to be delt with head on to keep us all in the best shape we can be. Screenings are important at any age and preventative medicine. The amount of people who negate doing this amazes me. There are free clinics for screenings if people can't afford them, forget those who are insured. You are only sharing too much if you feel uncomfortable. My husband is a twin, so I can well imagine the grief of your twin's passing, especially if you share DNA passing.

Key that you are being screened for possible genetic related conditions. Kudos, as miserable as they are, you are taking positive steps to allow you to continue to enjoy loved ones and friends. I think that you are terrific and a knowledgeable inspiration to all on this site. Keep that thought!

Hope to hear from you soon!

draftee profile image
draftee in reply toBet117

I hope your 6 month check up is all good news and you walk out with a big smile on you face......

You hang in there too,

draftee

Bet117 profile image
Bet117 in reply todraftee

Thanks, draftee!

I will think of you!

I hope that my words were of some help to you!

Seeing the nephrologist will give you direction and answers..put your mind at ease!

Please keep in touch and let me know how you are doing in the meantime!

I care!

draftee profile image
draftee in reply toBet117

Thanks Bet117

You and Mr. Kidney are really two very nice people, This site is so much better with you two on here, I did check out DaVita.com and it is very informative, Right now I am very thankful that I have no pain at all except for the normal body pains of an old man, I can drive and read and take a walk, I feel very normal except for the cloudy urine issue but it seems to have improved some since I increased my water intake, The thing that gets me is that I see my heart doctor every 6 months and my blood work for my last visit showed my 1.62 mg/dl creatinine level, My heart doctor did not seem concerned and called it slightly elevated but my family doctor was concerned and set me up with the kidney specialist "" in march '', So until then I will just try to live a healthy life and keep hydrated,,,, Again thank you for your kind words of support.

Best regards ......draftee

Bet117 profile image
Bet117 in reply todraftee

No thanks needed!

Hang in there!

Annica profile image
Annica in reply toBet117

Thanks for your inspirational words. I am printing this & will read it over & over

to help me cope with my husbands terminal illness. I will also read it him,

Thank you.

Creatinine Clearance is primarily used by physicians and labs to determine your GFR and determine the level of kidney function you have. Numbers vary depending on a host of issues, exercise (steady vs strenuous), diet (kidney-friendly), and other health issues. Since I was told I was CKD Stage3, 7 months ago, my lowest number was .9 and my highest was 2.1. By moderating my diet and adjusting my winter exercise from the amount of activity I do the rest of the year I now have it at 1.57.

It basically is a waste product that is filtered through your blood and then into your urine and then eliminated. If you have frequent UTI's your CC will possibly be higher.

webmd.com has some good information on this as well as a good slide presentation to explain it to you. Some meds like Tamsulosin and others can help you if you have frequent UTI's and steady your CC level. Also, the site I use a lot to have labs explained is labtestsonline.org Give that a look and see if it helps you.

Hope that helps.

draftee profile image
draftee in reply to

Thank you very much Mr. Kidney.

I hope this is not a stupid question but is there a home test kit that will give you an accurate creatinine level number or does it always require your blood work to be sent to a lab.......

If you don't know something it's never a stupid question to ask. Remember that at each and every doctor appointment.

You can go to the DaVita website and find the GFR calculator. You will still need to input your serum creatinine level to get the GFR.

draftee profile image
draftee in reply to

Thanks again Mr. Kidney.

You have been very helpful...

Bet117 profile image
Bet117 in reply to

I totally agree with you, Mr._Kidney. If you don't know something or are unclear about a specific issue then you owe it to yourself to ask.

No thought or question is ever a bother or dumb! We have both emphasized that KNOWLEDGE IS POWER!

It is important to have a list of questions prepared before going to a doctor's appointment; be it based on labs or just concerns and plan related in general. These people are being paid very well to provide a service to you..If they are not answering in layman's terms or listening and responding then hire another doctor..

Davita has been very helpful as has the NKF website for tools..

Great thoughts!

phillen profile image
phillen

when you have chronic kidney disease you normally have a steady increase or it can stay the same but it can turn acute so you would get a massive jump this is what happened to my husband after about 15 years stable stage 3 you can recover again back to your average if there is a reason for it hope that helps x

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