Finally got Nephrologist appointment!

I'm back in Stage IV is what I meant to say--my phone autocorrects

Marj

It sounds as though congrats are due to you, too, Marj - that’s an amazing improvement in your numbers.  It sounds as though your new nephrologist has a magic wand!  Keep well.

Yes, I've been both very surprised and thrilled with the improvement that has occurred in my renal function over the past seven months. I've become convinced that my former nephrologist really did not have an effective treatment plan in place so I'm very thankful to be seeing a different nephrologist now who clearly seems to have a better understanding of what has been happening with my kidneys.

Marj

I would love to hear what your new treatment plan is, Marj, if it is that that you think is responsible for your very good news,

During the four years I saw the first nephrologist my BP ran quite low most of the time. I also experienced severe plummeting BP 4-5 times a day. He had me taking a diuretic and a low dose of BP medication. I'm really not sure why--it was never clear to me.

My new nephrologist immediately discontinued both medications. He told me that my BP was too low. He said my renal panel would improve when my BP elevated, which has happened. It has been a gradual improvement of anywhere from .2 to .5 in creatinine each month over the past 7 months.

My new nephrologist said my BP was so low that I didn't have enough blood flowing through my kidneys. He emphasized that extremely low BP is as problematic for our kidneys as extremely high BP.

I had asked my first nephrologist about this several time but he would always respond that it wasn't low enough. (It was often 75/48. And when it would plummet it would suddenly drop to 62/36. I was just supposed to drink ice cold water when it plummeted.) so my old treatment plan was the diuretic, the BP medication, and drink ice cold water when my BP suddenly plummeted.

That went on for four years. Of course o was relieved when the first comment my new nephrologist made, before I asked, was that my BP was too low. He then talked with me about what that does to kidneys and then pulled me off the diuretic and BP meds.

Now my renal function is improving. I don't know if there will be more improvement or not. I don't know if this mismanagement of BO has caused additional permanent damage--I'll be asking anputvthat in my next appointment on June 6th.

Now my BP ranges from 110/64 to 122/72. I just follow a low sodium diet. I exercise. I follow the lie potasdium diet and take my potasdium binder and my anemia meds. I feel MUCH better. And I'm relieved to be seeing a nephrologist who knows what he's going.

I think my situation is pretty unusual. It seems like nearly everyone with Stage IV-V CKD has elevated BP. Regardless, I'm thankful for this improvement and am hoping there may be more improvement. It is clear that much of what my first nephrologist told me was not accurate so I'm posing questions seeking accurate information from my current nephrologist' nurse as well as my nephrologist.

Marj

Marj, thank you for the reply.  I’m amazed that the original nephrologist thought it was ok for you to continue on both a BP lowering drug plus furosemide when your BP was already plummeting to such lows.  Thank goodness for that  second opinion.  Your BP sounds just perfect now not to mention that exciting improvement in your kidney function.  I can just imagine what a boost it must have been when you realised you were out of stage 5 and into stage 4, with perhaps even more recovery to come.  I have the opposite problem with difficult-to-treat high BP owing to my body’s dire response to so many of the BP meds, so a knock-on effect with my kidney function, not to mention the last 12 months of repeated UTIs that come with their own risks.  Still not all bad as I  blessed that a grey area on my bladder thought to be a tumour last year turned out to be a benign polyp.  Every cloud,...........!  Stay well, Marj.

Your mention of the fight with your blood pressure reminded me so much of my own.  Upon removal of my one kidney my blood pressure remained constantly good on the same medication I was always taking which was 20mg of Lisinopril twice daily.  Then suddenly 4 months later it skyrocketed.  The doctor said it took that long for my body to adjust and this was the "new me" and lets get to work trying to get it back to normal.  He worked closely with my cardiologist as they have such an expertise in the area of blood pressure.  I can not even list all the combinations of drugs that were attempted.  Some failed totally.  Others worked but only for a brief few hours after I took them.  The doctors decided they tried everything as it is recommended by the drug manufacturers.  The cardiologist suggested what was happening was that upon removal of the kidney my entire metabolism had changed.  As I had reduced my protein and salt intake my metabolism had sped up significantly.  So he tried a return to the Lisinopril which had worked so well (and which has a side benefit for the remaining kidney function) and added Amlodipine at double the recommended dosage.  I take each in the morning and at night.  Within 3 days my blood pressure dropped to well within the normal range.  I was concerned about the dangers of excessive dosage.  They both said I had to understand.  Abnormally high blood pressure would over time kill the remaining kidney, hurt the heart, risk stroke, all factors worse than taking double dosage.  The double dosage caused sleepiness, some muscle pains in back, but these went away within a month.  As they both said, suggested dosages, measurements of Creatinine, CKD, etc are all just averages based upon "normal" individuals with two healthy kidneys and no other diseases.  I am not normal (something my wife has told me for years, lol).  I am a man of 68 with one kidney and the potential recurrence of cancer.  To forget all the averages and norms and just concentrate on my own blood, urine, blood pressure results.  And most of all how I feel.  None of us knows the amount of time we have left.  Not even the totally healthy.  Get your body to where you feel well, are doing all you can to control things, and enjoy each day to its fullest.

Yes, I've had 3 UTIs this past year too. That's been a change for me. I had only had 2UTIs before that total. I'm planning to talk with my new nephrologist about this issue when I see him again on June 6th.

He and my ophthalmologist are both located in the same community--about 45 miles from where I currently live. So I've decided to sell my house and relocate to that same community this spring. This will make accessing these doctors much easier logistically both now and as I age. Plus there are more options for in-center HD dialysis there should I find that PD dialysis isn't working for me.

So having made these decisions, I'm finding that my stress level has decreased considerably. I know that I'm seeing a nephrologist who knows what he's doing. I'll have ready access to one of the top medical facilities in the country through him--another reason I'm moving. And, as a single 65-year-old woman who lives alone and is the last living member of her family, it will be MUCH easier for me to navigate all of this if everything is in one community (including myself this, my stress level is much better knowing that this move will solve quite a few things that have created real challenges for me. The CKD and the inevitability of dialysis remain, but simplifying my life in as many other areas as possible is clearly going to be helpful.

Consequently, I'll be moving within the next 2 month. I'm looking forward to getting that done. (Of course, I will hire a company to both move me as well as pack and unpack me--that will make this fairly easy I do have friends in that community who will jump in to help too both during the move as well as after. Plus I'll buy a townhouse (flat for those from the UK) in a community for active seniors 55+ years of age. There will be more supports (e.g., transportation, socializing) available to me through that community too.

I am a little surprised to find that I'm ready to buy a townhouse in a community for active seniors. But then I look in the mirror and think, "Ehen did this happen?" as I look at this senior woman looking back st me in the mirror(lol). But the time has, in fact, arrived.

Well, I'm clearly rambling on some this morning...

Marj

Ah, Rick, I love your message, and the fact that you have your sense of humour intact in spite of everything.  I've always known I wasn't "normal" (my hubby has obviously been speaking to your wife!) - how wonderful to find I have a twin!  Seriously though, I have said to my renal consultant in the past that all the drugs out there are only tested on those with two kidneys, never on someone with just one, so is it any surprise that I am such a problem to those treating me?  I am 76 years old and my one kidney, until the last few years, has served me so well since the age of 12 when the right one was removed.  In fact, one urologist recently remarked on looking at the image of my kidney on ultrasound, that if he went into a butcher and saw one looking as healthy as that, he would buy it!  He referred to my age a few times and I was rapidly getting the impression that he was really saying "What do you expect after all these years".  I wasn't impressed - after all I don't look a day over 21!!!   My ophthalmologist was not very amused when I related the urologist's remark to him.  Amlodipine was a no-no for me as my ankles swelled so much, becoming so inflamed that it resulted in a diagnosis of varicose eczema.  To date, Losartan at 50mg has been the only medication that doesn't produce nasty side effects - even doubling the dose of that produced a 24-hour all-over itch.  Apart from that, I do, to use your very wise words, "enjoy each day to its fullest", keeping very busy including running a local support group for a Charity.  Stay well, Rick.....if not "normal"!   

Wow, Marj. My 1st appt. with my new nephrologist, BP 140/90 but I was nervous and that caused it to go up. He gave me BP meds and they made me itch and headaches, so he took me off. Went back a 2nd time and BP 123/79. I take it at home and always normal. He said I did not need BP meds and BP fine. I'm shocked your first nephrologist made you take it. So happy your creatinine is better. Low salt, less protein, exercise, lots of water it's all part of keeping it strong. This is an excellent article.

https://www.medscape.com/viewarticle/881668

 

Marj, I have come across so many people lately for whom UTIs have become the bain of their lives.  I am fearful that the warnings about AB resistance are proving to be true.  The first three UTIs I had within as many months last year were all different bacteria- I was convinced that the ABs themselves were making the UTIs mutate.  A urethral stretch was carried out when they removed the bladder polyp under general anaesthetic in the hope of solving the UTIs but 7 weeks later along came another one.  Thankfully, I’ve today had the results that the latest one has resolved after 3 days of Trimethoprim.  I had just had a long 4 months free and thought it was all behind me!

It sounds as though you are going to have a hectic time ahead with the house move, but it sounds like the perfect thing to do in the circumstances and a very wise move.  Lots of good luck wishes that it all goes smoothly and that you will be very happy (and healthy!) in your new surroundings.

Thanks for sharing this great article!

And, yes, it is both surprising and somewhat shocking that my old nephrologist let my BP situation carry on so many years. I'm actually convinced, at this point, that he didn't know what to do. Although, he really should have sought out a consult or referred me out long before I requested the outside consult.

Nevertheless, I'm seeing a different nephrologist now who is clearly more effective.

Marj

I have definitely been reading your posts about your UTIs with great interest. they are certainly uncomfortable. And it is clear that they are hard on my kidneys; my BP actually elevated as my body attempts to battle the UTI prior to starting the sntibiotic. 

I'm still working full time do I'm going to approach this move very methodically. I've got one more room, my home office, to downsize. I'll have that done by the end of the weekend this weekend. I'll then have a house cleaning service come to help me thoroughly clean my house. So in 2 weeks my house will be listed by a realtor. Then it will just be a matter of waiting for it to sell. So I just have s little more work to do before it will go on the market.

I'm 74 years old and I've got some serious medical conditions. So this time I'm going to hire people to help me with the extra work. Thankfully I live in a small place and don't have much stuff. So this will go fairly easily.

It will be good to get to a community with really good medical care. Just improving the logistics of getting to/from doctors' appointments and labs will help me a lot. In addition, my stress level has improved so, so very much since finding a good nephrologist--even before my creatinine began improving. Consequently, it is clear to me that I've got to have confidence in my medical team. Of course, I will continue to monitor my data closely and remain very actively engaged in my medical care; however, I need to have dome confidence in each of the doctors I see.

So this move will address that later issue. I turn 65 this summer. It's time to relocate to a community for active seniors even though I still can't believe I'm this old🐶

Marj

“......I still can’t believe I’m this old”.  How do you think I feel - I can give you 10 years on that, Marj!😬  

Re the UTIs, one big question in my mind is whether they could be due to the Losartan for me - it’s listed as a possible but rare side effect!  Hope it isn’t as we’re fast running out of options with my awful list of allergic reactions to other meds

It sounds as though you have everything well organised for your impending move.  I’m assuming a “realtor” is what we call an estate agent in the UK?  Meanwhile, many happy Easter wishes - don’t work too hard with clearing out your home office!

Yes,  "the oddness" has come for me🐶

A realtor is a person who helps people sell or buy real estate in the USA. I'll actually be working with two realtors, i.e., one to sell my current townhouse and another to help me buy my new townhouse.

I'm definitely planning to celebrate Easter this weekend too. But I'm a university professor so have a long holiday weekend. So I plan to make good use of the extra holiday time to finish my downsizing efforts in my townhouse.

With the anemia, albeit under effective treatment, I'm mindful of doing things gradually and in small increments of time so as not to overly tire--it seems to be all about keeping everything balanced.

I hope you have plans for Easter too!

Marj

Thank you for explaining the role of realtors, Marj - as I thought, they are the equivalent of who we call Estate Agents.  Haven’t needed their assstance over the years ourselves as we’ve been in the same house since our marriage age 50 years ago!