National Kidney Month- Do y’all have kidney disease with PH?

[brittany-foster]

@jenc Hey Jen, I actually was born with a condition (currarino syndrome) and it is a form of sacral agenesis. In this defect there’s also a lot of kidney issues that can go along with it. I remember having many kidney and bladder tests done and that awful VCUG study with the catheter and small camera on the end of it. That was one of the worst things I remember going through as a kid. But anyways, I have been dealing with kidney reflux for awhile. It causes back spasms sometimes, bladder spasms, and used to require a lot of catheterizations and placement of a foley cath. Luckily that has gone away a little (knock on wood). That, and a few kidney cysts that are being monitored from time to time.

[jen-cueva]

I am sorry to hear this, Brittany. Kidney issues, including spasms and cysts, can be excruciating. Not to mention, catheters! My heart and bladder ache for you.

On a positive note, I’m happy to hear that you’re not experiencing these issues as often as of lately.

[tricia-stagner]

Along with my PH I also have heart disease (open heart surgery 9/11/2008 to replace mitral valve with a mechanical valve, I had to get a pacemaker 8/12/2012to keep my heart pumping and they sll of this developed stage 3kidney failure! But I am happy to say I am a moderate stage 3 and it has stayed stable now for 3 years! My doctors are so happy and so am I!
I take meds for everything except my kidneys!!

[brittany-foster]

@pebbles I am so sorry that you have so many co-existing conditions on top of the PH but I am glad to hear that you are being managed well. Do all of your doctors coordinate well together and communicate well? I think that is always half the battle when so much is going on. They really need to all be on the same page or else it begins to feel overwhelming and confusing when hearing too much input!

[jen-cueva]

Hi @pebbles, it sounds like you have a full plate. I agree with Brittany; it is often challenging to manage PH along with coexisting conditions. I am grateful to hear that your doctors have kept your kidney disease stable for some time. That is a huge positive. Great job!

As Brittany mentions, when dealing with multiple doctors, it is essential your doctors must stay on the same page. I had issues with this once during a hospital visit. This was related to my kidneys. The kidney doctor and my PH doctor did not agree on the plan. I actually spoke up and told them that we need to all be on the same page. That helped, but the first day was frustrating.

[brittany-foster]

@jenc I have been in that situation more times than I would like to count. For me, it is even more frustrating when I am the middle man between doctors. One will call me and I will say “okay I will let _____ doctor know” and then they will give me a message to give back and I call the other again saying “okay here is what they said ….” JUST TALK TO EACH OTHER DARN!!!! lol . end rant ! hahahaha

[jen-cueva]

@brittany-foster, exactly! I think at times, why do I need y’all again? Hehe
Just kidding as I know that I need them all, but it certainly can become exhausting when you are the middle man. You are certainly not alone in this rant!

[jen-cueva]

For those with experience with PH and Chronic Kidney Disease (CKD), what are the symptoms that you struggle with the most related to CKD?

At the end of last week and this week, my body was signaling that my CKD was worse. My labs on Thursday showed that too. I’ve been experiencing increased back pain, swelling, itching, and muscle cramps. Muscle cramps are also common with electrolyte imbalances, but it’s more noticeable for me when CKD progresses.

How are our members who are managing PH with CKD? I’m sending y’all extra gentle hugs this week.

[Colleen]

@jenc I wish to God you weren’t dealing with kidney disease on top of your PH. I know from Cullen’s experience that once labs are out of whack it can be a rough road to stabilizing them again. Staying hydrated is a big step in getting the creatinine levels back on track but how do you manage that with PH? I know with PH too much water can also be an issue.

Cullen was diagnosed with Kidney injury about 2 years post-transplant. It continued to worsen and eventually we were told he has kidney disease. Progression continued and now he is stage 3. His immunosuppressants caused the decline but his doctor is suspicious that the kidney injury possibly started when he had PH.

Keeping you in my prayers Jen. Let me know if I can help you with anything.

[jen-cueva]

Thanks, @colleensteele; your support means more than you know. As you know, it can take time to stabilize those kidney numbers once they are out of whack. PH certainly doesn’t help when I try and limit fluids, but I also need to drink a bit more. It’s a delicate balance. I wrote a column about maintaining this balance within the last few years.

So many bits come into play when trying to stabilize our kidneys. Things that we eat, drink, and activity level, all play a part. Medications can also affect this delicate balance.

I know that we have others here with PH and CKD, so you all know how challenging this can be to balance.

@colleensteele, have Cullen’s kidneys been stable lately?

[aunt-lizzie]

I love my kidneys and would not do anything to jeopardise them, so, when I was participating in a Clinical Drug Trial for a potentially new PH medication and my kidney function eGFR numbers started heading down, and I was getting symptoms I could not ignore, I pulled out of the trial, much to the organisers’ disappointment.   They said it could not be this drug, it must be something else.  We PH-ers know our own body and I knew mine.  It took about 3 months for me to get back to normal.  I had been very unwell, food tasted awful, I had a raging thirst for coffee milk drink, even water tasted bad.   It had been a lesson I will never repeat.  I feel for all of you who have kidney problems that cannot be resolved as simply as mine were.

[jen-cueva]

Hi @auntlizzie, I’m sorry to hear about your kidney issues while participating in a clinical trial. But, I am grateful that you could stop that CT and your kidney issues resolved.

Unfortunately for me, my CKD is most likely from taking multi diuretics to help my CHF. But, I also experienced a decrease in my already bad kidneys when taking Adempas and stopped that treatment as it wasn’t worth more damage.

Thankfully, my kidneys have been stable for me for a bit now until recently, and now we are trying to get back to my “norm.” As Colleen mentions, it takes time to get back to your norm once they are out of whack. But I will get there, slowly but surely.

Thank you for sharing your experience on this topic and your words of encouragement.

[brenda-denzler]

I’ve been watching my kidney function slowly decline for the last 4-5 years. Today I got a creatinine level that is the highest I’ve ever had. 1.something. I forget the exact number. But for my lab, .8 is the top of herd normal. The last time I had these blood tests, my creatinine value was .83. Now it’s 1.x.

My doctors haven’t been too alarmed at the direction of things. I’ve pointed it out to them, and they yawn in boredom. Now I’m even more out of “herd normal” range than before. Will they react? Or will we continue to watch my kidneys sputter and spit and “run rough” until my test numbers are even further out of range?

Does kidney disease GO WITH having pulmonary hypertension, or is it a totally unrelated illness that some people get just become some people get kidney disease?

[jen-cueva]

Although March is National Kidney Month, today is World Kidney Day. This year the theme for WKD is kidney health for all. The International Society of Nephrology offers resources, ways to support WKD, and education about kidney health.

Check out their website and ways to promote awareness today for World Kidney Day.

WKD 2023

How did you promote WKD?

[sally-hoffman]

I, too have developed kidney disease along with my PAH.  I have been on diuretics for 50 years, but never had kidney disease until after my PAH diagnosis and an extremely early (11/19) case of  Covid and extremely mild (just chills for three days).  Later learned the Covid had attacked my kidneys and I needed a stent.  Before the stent my creatatine  levels had reached 2.03.  I now hang out between 1.50 and 1.90.  If we cut the diuretics, my numbers go down, but I feel worse.  When we increase the diuretics (80 mg Lasix and 50 mg Spirolactine)  I feel all over much better.  Everything is a trade off.

Last week I made my first party in five years!  It was great.  Wish you all could’ve been there.

 

[Colleen]

Oh @mainegal I feel touched that you wish we all could have been at the party. It’s amazing how friendships grow in these forums even when we have never met each other.

It must have felt wonderful to be out among friends again!

I’m sorry that you also have kidney disease but appreciate that you shared your experience with us. Cullen’s kidney disease is primarily blamed on his transplant immunosuppressants but his nephrologist suspects that kidney injury began when he had PH.

[jen-cueva]

Hi @colleensteele, yes, so touching that Sally thought of us while at that party. This connection we build here in the forums is a tight-knit PHriendsghip. I appreciate y’all and hold y’all close to my heart.

I’m working on a column piece for kidney month, and another colleague also developed CKD post-transplant, and the meds are blamed.

It;’s unfortunate that when something helps us has adverse side effects, too. That’s part of life, I guess.

[brenda-denzler]

That’s what I’ve fought against my whole life — that negative outcomes happen due to our treatments for health issues. It may be, as you say, just the way life is. But that doesn’t mean I have to approve of it…and I don’t.

[jen-cueva]

Let’s get the party started, @mainegal! I’m so happy that you had that opportunity. However, it makes my heart full knowing you wish we could all have been there. What a party that would be!

On the kidney talk, you’re creatine was similar to what mine has been. However, we try to keep mine at 1.8 or less. It’s certainly a balancing game, and it’s challenging. We play with the dosages to see what works best for our bodies. We want to protect the kidneys from worsening and manage the extra fluid to prevent CHF.

Thanks for sharing. When’s the next party?