GFR of 7; does anyone know ...

yes 

helen.

my dad left us few years ago because of cancer. till now he is not around anymore. but i miss him badly. sometime i do cry in the middle of night. 

 

Hi TMNA ".. systolic blood pressure between 130 and 140 can help with kidney function .."

Is this a fact or just from your experience ? Do you mean 130-140 is better than 110-120 SBP ? Thanks. Hank

My mom's gp, who just retired, always strived for that range (130 to 140). I think it's because the kidneys could use some "help" with the higher blood pressure. 

Hi,

I have always been told aim for under 130 as normal is under this level, it may be different in other parts of the world but even 130 is still high for us kidney people.

Thanks TMNA + helen, I read somewhere also that kidneys like BP a little high (not really high, then it is very bad) better than low BP (really low is also very bad), but never had any good explanations.

Hank

Hi,

No kidneys do not like a little high or very high bp it needs to be around normal even if it is controlled with meds, high or very high bp damages the kidneys. Where have you read high bp is good for kidney's?  I have never read anything like this?

Hello again, everyone, and thank you for your warm welcome and kind words; they are really precious to me, and I feel I must respond to them. I have been locked out of my account and have had to enter a new password. or I would have posted this yeaterday.

Helen: Thank you so much for your reply; I don't think of myself as brave as the decision I made had a lot to do with my squeamishness about bl**d!

Wheen I was shown the Dialysis Unit and all those tubes full of the red stuff I was quite literally sick and had to rush out of the unit. The idea of transfusions, even autologous ones, fills me with dread and I know I could never do it. Peritoneal dialysis isn't an option as I haven't the room to store the equipment, and again just the idea of needles in my tummy makes me want to throw up.

I have got an up-to-date will and a D.N.R order in place, together with an Advanced Directive, so I suppose I shall just have to wait and see. I don't have any oedema at present although I get very short of breath. The fact that there won't be too much pain is very comforting -- I am a real wuss when it comes to pain!

Again, my thanks, and God bless you

*

yehyeh: I won't change my mind, thanks all the same. See my reply to Helen. I don't want to hurt my family either, but I can't see any future in such a time-consuming and costly procedure just to buy me another six months or so. Best wishes, and God bless you too.

*

MrsO-UK Surrey: Thank you for your most welcome comment; I think it is marvellous that you are willing to 'try anything', but as you say, we are all different -- and some of us are not 'fighters'. I think your idea of a second opinion is a good one, but I wouldn't know what to do about getting one -- and I don't suppose it would change anything. It seems that they are only really concerned about you if you take the dialysis route, and that is not the one for me. God's blessing on you, my friend.

*

TMNA: AFAIK my BP is being pretty well-controlled at 110/65 this morning. I think the ACE inhibitors are working quite well.

Thank you for your input, and God bless and keep you.

bert74483

Hi helen + TMNA, This is one of the many articles I found on the net. I am sure you can find similar ones if you, helen, are not spending so much time on this forum helping others (which is a good thing BTW and I admire you for it)

I would post the link but this forum is notorious for blocking messages with links.

Ideal BP for Kidney Disease Patients :

The optimal blood pressure (BP) for patients with chronic kidney disease (CKD) appears to be 130-159/70-89, according to researchers.

In a study of 651,749 U.S. veterans with CKD, Csaba P. Kovesdy, MD, from the Memphis Veterans Affairs Medical Center, and colleagues analyzed all possible combinations of systolic BP (SBP) and diastolic BP (DBP) from lowest to highest in increments of 10 mm Hg.

Hank

My mom had been going her gp for over 30 years. As I got to know him, I could see why.  He came from an age when doctors understood all parts of the body, and not focused on one specialty. I wish he waited another ten or so years before he retired. 

Yes, they were the days, TMNA. Doctor's used to think outside the box. I long for the return of the days when there was no appointment system and we used to sit in the waiting room for hours. We didn't know how lucky we were then. Now we generally go in on time but are only allowed to discuss one problem per 7 or 10 minute appointment, whereas two or three symptoms might give the whole picture and provide an answer but that would be thinking outside the box! At one appointment when I tried to mention another problem, I was given short shrift and told to make another appointment. When I got up and walked towards the door, he said "I notice you haven't had a flu vaccination - would you like one"!!!! So perhaps if I'd offered to pay the surgery to speak about my other problem, I would have been more successful - they get paid for each flu jab!!!

Hank, how up-to-date is that article? I'm very sceptical of researching 'stuff' on the web, preferring to only rely on such reliable sources as the NHS and the Mayo Clinic.

And,Helen, please continue to give your amazing reassurance to others on this site - there's nothing like hearing the experience of someone who has been there and got the t-shirt. Keep well and keep posting!

Bert, I'm in awe of you for being so organised. If you do consider going down the second opinion route, either your GP can refer you or should be able to recommend someone. Also, other resources, such as the National Kidney Federation, are very helpful.

As far as those "tubes full of the red stuff" are concerned, just don't look- I even look away when I'm having one of my multitude of blood tests!

And by the way, dialysis can buy many more than 6 months, in fact it can buy many years.

Keep in touch, Bert - as they say, it's good to talk. And don't get locked out any more! Isn't it so frustrating when that happens. I lost a post I had almost completed this morning, aaargh! Probably operator error as I'm not as nimlef fingered on my iPhone as on my desktop - however do the youngsters do it so fast with both thumbs?!

Hi MrsO, The article was published by Renal and Urology News in Aug 2013. However, there are many more articles from reliable sources mentioning this study. I am sure you can look them up for more details. To me, a study that covered over half a million people should be paid attention to.

At least, do not believe blindly in the old "wisdom" as "when it comes to BP, the lower the better". Some people I know stuff themself with BP meds and walk around with 90/60 BP and think that they are good. Hank

Hi Bert,

I completely get you about the haemo I didn't fancy it too many restrictions I was 37 when I was on PD.  Do you live in the uk? I didn't have anywhere to store my stuff as I have children and no free rooms.  The hospital bought me a garden shed (you have kidney failure, have a shed, every cloud and all that) Also you don't put needles in your tummy, you have a pipe (tenkhoff catheter) placed in your tummy under general, so you can't feel it.  Obviously it hurts a bit for a few days after but thats it.  The actual dialysis doesn't and should hurt.  I am not trying to change your mind as I said I respect your decision but please just be sure to investiagte all avenues and I would be happy to share my experience with you if it helps, you may have guessed I am honest and to the point and I don't silver coat things a spade is a spade as they say. I would see what your iron and HB levels are as these can cause breathlessness that you are having, your HB should be higher than 10 you could have an iron infusion they usually put this with a treatment called EPO but you will not like this as it is an injection into your stomach that you do yourself and I can hear you now saying now way .  Please keep us updated on your journey as you are not alone, as you can see there are very caring people who are here to listen to you and know what you are going through even if you have chosen a different path.  It would be unfair to try and make you change your mind but I would very much like to here your story as you go along.  The whole DNR thing is brave, my dad had cancer, he had a massive lung bleed and we were in a & e it took me nearly two hours to calm him down so he could breath and a dr came in and started to blurt out the whole DNR thing, I stopped her and asked for a word outside I told her I knew she needed to know but she was making him worse I told her I would speak to him (he would take it better from me then I would let her know) I know it is a hard thing as I had to ask him and make him in a state again, I remember telling him it was his choice but did he really want to be in that state, after thinking about it he made the same decision, so yes you are brave.  I then had to ask my Nan the same thing 4 years later. Good luck with everything, much love your family are lucky to have you x 

Aw thank you Mrs O,

You truly are an amazing and inpirational lady. I often referr to you (not by name) just a lady on here with one kidney as I am sure people will read your posts and get great comfort from how fab you have done with your sole kidney x

Hi Hank,

Thank you but I hope you don't mind if I decline to read the link, like I said I don't believe everything I read on the web.  I would rather listen to the advice of the people who have looked after my since I was 13 (I am 39) the people that kept me at stage 3 from 13-37 by keeping my blood pressure under strict control (and not 90/60 as you say) it was kept around 125/79.  So I think I will take my chance and listen to them as they have not let me down to this date.  Of course if you want to run your blood pressure on the high side of something you have read online then by all means that is entirely your choice.

I help people as I know how scary and lonely it can be, plus someone helped me, my best friend risked her owm life to save mine, so if I can share my experience and it helps one person not feel this way then I am very happy. I do this in my spare time, I work full time, also run our family business, look after my children so everyone gets there fair share don't worry about me spending time helping people.  I like to do it, it is the type of person I am.  Good luck with everything please keep posting updates.

I have been looking for a primary care doctor for about 10 years. I'm 52, and I have yet to meet one that really seems more than a broker who refers me to specialists.  Anyway, a recent visit to a dr I was just trying out left me not too thrilled, once again. I had to fill out a sheet what brought me in:  I had shoulder pain, hip pain, and a pain in my chest/abdomen. He addressed them in the order I listed, and didn't have time for #3.  Well, that was the most important. I went to a gi, who later determined I had an ulcer from the pain meds I was prescribed.     

 

For some reason, I head the kidneys needed the extra push it can get from higher blood pressure. I've also heard that the new recommended bp is higher than what it used to be.  They say 120-130 is perfectly fine, even if you don't have kidney issues. Ha.. my son  gets mad when I say, "they say," and always wants references. 

Bless you, Helen, but this must be the mutual appreciation society, because after reading your reply to Hank yesterday, I became absolutely in awe:

"I work full time, also run our family business, look after my children..."

Whaaat?!  You deserve a medal.  Keep it up!  

Hank, many thanks for the further info.  Yes, I agree, the greater number of people involved in a study, the better, and the more reliable the results.

As for those walking around with "90/60 BP" - I wish!  Mine was 180/84-ish when last monitored.  Sometimes, it's even pushing 200 systolic.

Hi MrsO, Are you on medications for high BP ? 180-200 is high. If you list your meds, maybe someone can have a good suggestion. Hank.

Hi Hank, yes I am on medication for high BP and I have chronic kidney disease but, unfortunately, I am my renal consultant's "awkward patient"!  I have been on about 8 different medications over the last few years and they either don't work or my body is intolerant of them, not to mention that one or two of the pills have actually further reduced my kidney function and have had to be stopped after just a couple of weeks.  Another reduced my sodium levels and left me quite lifeless.  I have only a sole kidney and the kidney function is probably contributing to the high blood pressure and vice versa.  I've listed my medications previously on other threads and I don't want to bore others by repeating them.  I'm hanging in there and about to have another blood test in the next couple of days ready for my next renal appointment next week.  Many thanks for your support, Hank. 

So, my mom went to a cardiologist, for the first time.  Apparently, HE wants to keep the bp below 120.  Says higher bp is good for the kidneys, but tires the heart.  Since she now has been diagnosed with heart failure, we have to opt on a lower bp. I hope those whow have been following this discussion will take note. So, if you have a healthy heart but compromised kidneys, a slightly elevated bp should be fine.  But, if you're 82 and your starting to experience heart failure, be careful.

 

Hi TMNA, It is OK to be on the side of caution but I would not want BP to be too low. The study that I mentioned earlier from Memphis Veterans Affairs Medical Center covered morbidity of 651,749 CKD patients, regardless of causes. It seemed to indicate that patients with BP within the range of 130-159/80-89 live the longest. The more you stray from the range, the higher your morbidity.

Hank

Yes... I am more for the slightly higher np. I may ask if it's okay to aim for 120-125 bp,given her heart fAilure. She will meet with new nephrologist next week.

Bp

Hi MrsO, I read your earlier posts re your struggle with high BP. All I can say is that 6 months ago I was on doxazosin (been on for years- doxazosin also works to lower BP as you already know) for BPH. After a bout of high BP attack (now I know it was due to kidney response to urinary retention) I started metoprolol (a beta blocker). Within a week my BP started to gyrate wildly (very low + very high) and it brought my eGfr down to 35 from 51. I switched back to Bystolic which is also a beta blocker but is known to have the least side effects. Its slow release is in term of days, not hours so it kept my BP fairly stable. Right now I am on both doxazosin and Bystolic. Bystolic also eliminates the mild palpitations that I used to have, probably due to doxazosin. Last check a month ago my eGfr is 57. Hank

Hi MrsO, don't give up on your BP, not yet. Try different things. You have not much to lose. You can monitor your BP. As soon as you find something that lowers your BP, stick with it. As long as your BP is lowered, you kidney function will improve. Hank.

Hank, I'm not familiar with Bystolic but Doxazosin is definitely a no-no after the skin biopsy for severe urticaria pointed to Doxazosin (or a mixture of it with Losartan) being the culprit.  Believe me, if I ever do find something that lowers my BP, doesn''t further reduce my kidney function or give me nasty side effects, I will "stick with it", as you say.  Meanwhile, thanks again for the support.

Bert I have read your posts and I understand your feelings. I am early in this process and 13 years younger but I have made the same decision about advanced care. I have other health issues and my priority is comfort and quality of life. I intend to enjoy each and every moment of my time left on ths earth.

helen54849 bert74483 • 14 days agoHello Bert,

I don't do sympathy either so there will be none of that from me!.  Am I allowed to say you are brave to make such a decision? Like you say it is completely your decision and I respect that.

As you go on the tiredness will get worse its par for the course.  You may feel sick, I know when I was 6% GFR I felt so sick and I couldn't even look at food never mind eat it this was the toxins building up in my body as neither of kidney's could get rid of them.  Apart from that I was ok, no funny swelling or anything like that.  Oh I cound't remember the names of every day items for the life of me, or what someone had said to me 3 seconds ago very frustrating.

I was told by my neph that dying of kidney failure is the best way to go as it is not nasty or painful, quite the opposite, very peaceful. I suppose you just get more and more sleepy (but obviously I don't know this for sure, nor does my neph).

I think 70 is a good age, and you know yourself better than anyone else, so you know how you feel and if you have had enough,, then you have had enough.

Regarding preparing for your last days, I am not sure you can prepare in that way.  I suppose it is a case of getting your affairs in order and then living the rest of your life as you wish.  I personally am not affraid of dying, everyone does in the end right? I think it is more of a sadness for those left behind as they are the real ones who suffer we are no longer there to feel anything.

I hope this has helped you a little

Helen

I also found Helen54849 comments very helpful. Death is not frightening to me but understanding what may be ahead is a huge comfort, You will both be in my prayers. Take Care. You are fighting the good fight. Don't doubt it

 

Hello,

I was glad to be of help I also respect your decision, after all it is your choice how you are treated.  I was 37 when my kidneys completely failed so since I have fought from the age of 13 I decided to carry on.  I had my transplant and did have a rocky start but that was mainly due to the transplant hospital continuosly poisoning me with anti rejection meds.  I am back with my own hospital now so thiings are much better, I have been going for so long they are an extra family.  So my kidney function was 6% and creatinine 680 and as of yesterday it was 84 and my GFR 65% I am so pleased.  Have you made a list of things you would like to do? that way you can achieve everything you want to do and cross it off as you go along.  Good luck and I am sure you will live every day full of the things that make you happy. x

You are definitely a Warrior Helen! My disease is related to autoimmune issues and is early at this point. My main issue is fatigue and I never know which health condition is the source. I have done my bucket list over the past few years so now I am learning to relax and enjoy a slower pace. I am a learner and curious by nature so I wondered what it would feel like if my kidneys worsened. Your note to Bert was very helpful. Please keep sharing with us. Knowledge is power!

Hi,

Reagrding the fatigue low iron and HB levels are common for us.  Get these levels checked, mine went funny at stage 3 (it can happen at anytime we are all different) I had iron tablets for a bit but my neph told me if they didn't work in 3 months then they wouldn't work so I had an iron infusion and some EPO and that did the trick, also your vit D, vit B12 and parathyroid levels can all go a bit mad all these things contribute to you feeling out of sorts, getting these levels better (they can all be made better) is half the battle. I didn't really have any symptoms as such was a bit tired and when my levels went funny was breathless but apart from that I was lucky, I had no swelling or anything.  When I got down to 6% I was really tired I still worked full time and ran our business but I was in bed for 7.30 after everyone who needed bathing was bathed and put to bed and butties made etc.  I also couldn't eat the site of food made me sick and my poor husband just wanted me to eat something and I really couldn't. Then I started PD (peritoneal dialysis) it took about 4 weeks to feel a bit better, not 100% but better, so I started metafit they do this in the army to train the troops so I did this 3 times a week and this helped sometimes after work and everything else I didn't want to go but I forced myself and always felt better.  I can't wait to go back but I think I will give it another month or so.  I don't want my inards outward not very good that.  I hope you complete everything on your list you need to do some think outside the box daring things lol 

You are such an awesome person. I am glad to have met you albeit online!   I have made lists of the things you have mentioned including iron. I see endocrinologist this week so we will see what current levels are. Everyone runs pretty much the same tests so I am checked frequently. Have scheduled a trip to Siesta Key for summer. Will see what else I can come up with. Take Care.