To continue my “struggles,”
I suppose it was natural that I didn’t associate the difficulty I had in getting dental X-rays to PKD.
Dental X-rays? Yeah. To put it politely, there is such thing as the “gag reflex.” As the 1990′s moved along, dental X-rays were getting harder and harder for me to tolerate.
If you, as a PKD patient, have noticed this, I hope this comforts you in that you are not alone!
I also didn’t make too much of noticing that my fingernails were becoming more and more brittle as time went on.
A symptom of PKD? The condition of my nails improved considerably when I was on dialysis and are almost perfect after my transplant!
In any case, my kidney function was on the decrease. Yet as many of you know, not much can be done while there is still ample kidney function! (I wish something could be done. Both then…and now! Well, you could drink a lot of water!)
At last, in 1995, my primary care physician referred me to a nephrologist, who I later found out is one of the top nephs in New York City (as published in a local magazine of top doctors.)
And the monitoring began. The blood tests for kidney function and hemoglobin, the 24-hour urine collection (in what I called “the little brown jug!”)
And the symptoms started. Fatigue. Painful bone bruises (really tough when standing on the crowded NYC subway!) And, the leg cramps. I had those bad.
Waking up at night, legs locked, forcing them to stretch only to have the muscles on the other side of the legs cramp up. The pain was quite severe.
Then the time came to inject myself with epo. I developed this whole routine of setting up a tray in the bathroom with my..er..paraphernalia and shot myself up! Well, I kept telling myself, “This is a heck of a lot better than a transfusion!”
And it helped! The fatigue diminished!
All this while still working as a computer programmer for a major bank!
What fun!
More later!
Peace and Blessings!
Coach Richie Perl
Certified Professional Coach
Certified Trainer of Neuro-Linguistic Programming
Little brown jug, huh? Mine was red. And I was grateful that they started to provide a funnel. I’m a girl, y’know.
My nails were always strong, my hair, thick and full. Now it’s falling out faster than average (still very thick, though), and my nails are only slightly stronger than notebook paper.
Didn’t know about the gag reflex thing. I don’t spend much time triggering it, so I didn’t really think about it. One more thing…
Oh well. At least when I move back home, I’ll have more resources available; there’s a medical school (a GOOD one) in Cincinnati. Maybe I can finally get some medical attention and find out just where I am.
Hi, Lisa!
So you are going back to Cincinnati? (Sounds like a song title!)
That seems like a good idea. I got the sense that you would be more involved with your community there.
Besides, you’ll get to watch the Jets beat the Bengals so they can get into the playoffs!
About the gag reflex – have you gotten dental X-rays lately?
Be good , Lida!
Keep On Truckin’ !
Peace and Blessings!
Coach Richie Perl
Now I’m curious….what does the gag reflex have to do with PKD or impending renal failure? Seriously….is that a symptom? As someone with 48-49% renal function, a part of me says ‘yeah, this is great’ while the other part of me says ‘oh my god, you’ve reached that slippery slope’.
Next week I’ll be flying to Atlanta to participate in what should be the last year of the CRISP II Study. I’ve been going to Emory for overnight in-house stays for nearly 9 years now and I must admit that if this is truly the last visit I will miss this. I will miss being cared for by caring PKD experts. I will miss having annual, accurate GFR, MRI, and ultrasounds. I will miss chatting with the nurses who have enjoyed hearing about the progress we’ve made in PKD advancement since these studies have begun. I will miss my two doctor friends down in the MRI department who have worked with me through the years to try to get the most accurate images for our study.
Again, this is no ordinary hospital stay….this is PKD progress….this is voluntary blood draws, uncomfortable tests, yucky hospital food, and 24 hour urine collections…..but I’ll miss it just the same because it is incredibly gratifying to know that my kidneys are contributing to PKD progress. I’m a dot on their chart….a blip on their radar…..a PKD patient that our researchers are working to help.
God speed.
Karyn
Hi, Karyn!
Well, all good things must end!
Emory is where my sister had her transplant surgery (donated by her husband!)
Now…
A dot? A blip? Please!
You know those PowerPoint slides which give all those great but ultimately meaningless statistics? Well, they are compiled from individuals…like you!
Here’s a weird analogy…The Great Wall of China is comprised by countless individual stones! Progress is measured stone by stone! PKD progress is measured patient by patient! And that includes you!
Thanks for participating! Your efforts will be benefiting many people, including possibly yourself!
As for the gag reflex, stay tuned!!!
Peace and Blessings!
Coach Richie Perl
For those who aren’t familiar with the CRISP Study, this was a study funded by the NIH to help researchers determine the best means for following and studying disease progression. The study took place over the course of 5 years at several centers throughout the country. Patients had to be within a certain age range and have reasonable kidney function at the time that they began th study. It involved overnight hospital stays for genetic testing, 24 hour urine collection, GFR, bladder and kidney ultrasound, and MRI. The outcome of this study showed that despite its expense, MRI was superior to ultrasound for following and learning more about cysts in the kidneys. Given the fact that so much data was collected, some CRISP patients were determined to be eligible to participate in the Tolvaptan drug trial and were invited to do so. I had the privilege and honor to be one of those patients who spent 2 weeks in a clinical research center in Orlando with 20 others from all over the country to help determine proper dosing for the larger double blind study taking place.
CRISP II is simply a continuation of the first study. Instead of 2 annual visits it is only one per year and is for one overnight stay instead of two. When I am officially done with this I will most likely continue to be monitored in what is called the Cohort PKD Study which is simply an observational study for PKD patients with varying degrees of kidney function.
As you can see, I’ve been busy with these studies for quite a few years now. My best advice, and personal plea and hope, is that people seriously check the PKD Foundation website to see what studies are available that they may qualify for, inquire about them and then give them a try. If we don’t roll up our sleeves to find a cure, then who will do this for us? The answer is pretty clear to me.
Happy healthy new year everyone.
Karyn
Karyn,
Thank you so much for giving of your time and energy to [articipate in this study!
Peace and Blessings…and Happy New Year!
Coach Richie Perl
CoachRichie,
I am completely BLOWN away! I was diagnosed with PKD around 8 years ago. My function as of now is still within normal limits. ALthough the thing that caught my eye in this blog part was the gag issue with dental X-rays. I have not ever had a problem until the last time I went to the dentist (about 5 months ago). The assistant had to numb my tongue and cheeks and the roof of my mouth just to take the xrays. And that still was REALLY hard. Is this really something that has been linked to PKD? I also have an issue brushing my teeth if the toothpaste gets too foamy (this too is a new thing)
I hope this message finds you well and healed and feeling great!
Aimee
Hi, Aimee!
I can’t say if the gagging and nausea is directly a result pf PKD.
But I do know that my nephrologist was not surprised.
That’s why he told me to have dry crackers when I felt nauseous on an empty stomach.
I’m sorry about your discomfort.
But…unfortunately, it MAY (or may not) get wprse before it gets better (with dialysis or transplant.)
Best of luck on your Odyssey!
Peace and Blessings!
Coach Richie Perl
Well I have to see my nephrologist here in the next 2 months so I will ask him about this!
How are you feeling? I have to say I am still lucky as of this point…… but I am afraid. I have not had to under go the 24 hour urine tests or anything of that matter ……. and I I am wondering if that means my Dr is not worried OR if I need a new DR at this point. This is honestly the first communication I have had with anyone else with PKD. I am on high blood pressure meds already, but that is it as of now. I get my function tested about every 8 months or so…… but just basically with a chem test…… BUN and Creatinine I guess. I am now worried that I am not being monitored the way I should be. I see a well known Nephrologist here in San Diego……. but I have not had to do any of the test I have read here or from people I have talked to.
Hi, Aimee!
I’m honored that I am the first person that you communicated with about your PKD!
A few points:
One – Simply ask your nephrologist what Stage you’re, and what tests are appropriate for your Stage. Also, ask what are the “markers” that indicate when other tests would be warranted.
Two – Numbers aside, the main criteria is how you subjectively feel. If you’re able to live a perfectly normal life, and have no dietary restrictions, that’s obviously a good thing. Many PKD patients don’t have any physical symptoms until their 50′s or 60′s, if at all!
Three – Start looking for information about PKD on the web. The PKD Foundation is a good place to start. And there are also quite a few other websites with great information. (And websites with not so great information!)
Four – When you feel you pretty much understand what the disease is all about, you might consider signing up yo one (or more) of the various on-line message boards dedicated to Kidney Disease. There’s a good chance that you will “meet” someone that you’re compatible with disease-wise, and become “buddies.”
PKD Foundation: http://www.pkdcure.org
KidneySpace: (All kidney diseases) http://www.kidneyspace.com
Daily Strength: http://www.dailystrength.org/c/Polycystic-Kidney-Disease-PKD/support-group
Please let me know if you need further assistance!
Peace and Blessings!
Coach Richie Perl
Wow, some great information. I was diagnosed with PKD about a year ago. I’ve had two cysts drained and 1 attempted removal due to location and complications. Up until the past few months, I’ve had no symptoms. Recently I’ve noticed my hair is falling out rapidly, nails are paper thin and brittle, leg cramps at night that are unbearable and constant fatigue. (I’m usually a very energetic person). Is this a sign of complications or progression of the PKD? This is the first I have heard of these symptoms being related.
Thank you for your blog and much health and happiness.
Amy
Hi, Amy!
Sorry you’re experiencing your symptoms. Unfortunately that’s part of the PKD Odyssey.
Considering you were diagnosed only a year ago, your disease seems to have been somewhat advanced.
The fact is, you’ve had PKD all your life.
Yes, the symptoms are signs of progression (or…deterioration!)
It seems to me that you might consider doing some more research on PKD. THere are so many sources of on-line info that I couldn’t list them here.
Start with the PKD Foundation if you haven’t already done so at
http://www.pkdcure.org for your research.
Please let me know if you need further assistance on your PKD Odyssey, especially in the area of coping with your disease!
Peace and Blessings!
Coach Richie Perl
Hi Coach & all, Just moved back to Cincinnati myself, like Lisa. Having problems finding a good nephrologist that knows at least more than me on PKD. Any advice on websurfing to find a good doc.
Thanks Coach for the links to other support groups. I think it will help.
Betty
Hi, Betty!
I suggest you get a Yellow Pages phone book!!!
How retro is that!
Look up the major hospitals in Cincinnati and call to see if they have a nephrology department!
Tell them you have PKD and would like to know if they have a nephrologist who handles PKD cases!
Hope that helps!
Peace and Blessings!
Coach Richie Perl
Hi Coach, There are several conditions that I have been told are linked to PKD. One of the neph. docs told me that PKD affects all connective tissue (hence my many joint issues), the entire cardio-vascular system and makes all your organs potentially cystic. My mother and I both had thyroid and ovarian cysts. Of course many of us have liver cysts.
I’m sure everyone with PKD has there own list of problems that are associated. As someone else said this disease can create different problems for each of us. I guess there is very little in our bodies that can’t be affected from this. I thought I was becoming a hypochondriac for a while.
Veins apparently are also affected and cause, easy bruising, difficulty with IV’s, eye blood vessel breakage (looks bad but doesn’t really hurt the eye, and red moles (which are really busted capillaries) to name a few.
The above were all confirmed by one or more of my physicians.
Hope you and all reading this are doing well.
Betty
Hi, Betty!
No, you are definitely not a hypochondriac!
I was once accused of that myself!
Also, it must be noted that the meds have their own side effects which can be debilitating.
In effect, every case of PKD is unique.
Thanks for bringing this up to the forefront of our minds.
Peace and Blessings!
Coach Richie Perl
Thanks Coach for responding. It does make me feel less alone and affirms my feelings.
Anyone out there live in Cincinnati? I have a nephrologist who messed up my BP meds big time, so I’m looking for a new recommendation.
Also, I have checked with all kidney disease organizations that I could find on the web in Cincy, that has support group meetings. I found it very helpful when I lived on the west coast.
Thanks, Betty