I was basically diagnosed with this disease and told to go home, there was nothing that could be done about it. I've been reading that I should be watching my diet (limit protein, salt), avoid caffeine, avoid NSAIDS, etc. I am on hydrochlorothiazide for water retention and that's it. I had been taking Wellbutrin for depression, but promptly stopped when diagnosed because I didn't want to overload my already damaged kidneys. I feel like I've been given this scary diagnosis, have a million questions and no one who can answer them. For example, my blood pressure at last visit was 153/80 - is there some kind of SAFE medication I can take to lower my blood pressure that won't further harm my kidneys? Can I take Wellbutrin, or will that harm my kidneys? Other than limiting protein and salt (I'm already at a healthy weight) what other dietary changes should I make? Can I never drink coffee or tea again (even decaf)? I feel alone and very scared.
Hello Melissa...I hate to hear that on top of your initial medical issues you were left in the dark to drive yourself crazy of wonder!
I am happy someone had seen your post and took the time to post! A very nice man! If only all Doctors actually cared about people
the same as Dr. Jordan just did, it would be a better day at the clinic. I just want to say thanks too to the Good Doctor!! & God Bless you!
Prayers for you Melissa!! you'll rock the issue' I hear it in your energy
I am happy to hear you do educate yourself about your
medical issues. It's just not wise for people to always assume that Dr'.s are Gods. they are not! and they make more mistakes than most
people care to know!! Pray and take care!
Sincerely,
as a Sister...
TammyLee-
I am happy someone had seen your post and took the time to post! A very nice man! If only all Doctors actually cared about people
the same as Dr. Jordan just did, it would be a better day at the clinic. I just want to say thanks too to the Good Doctor!! & God Bless you!
Prayers for you Melissa!! you'll rock the issue' I hear it in your energy
I am happy to hear you do educate yourself about your medical issues. It's just not wise for people to always assume that Dr'.s are Gods. they are not! and they make more mistakes than most
people care to know!! Pray and take care!
Sincerely,
as a Sister...
TammyLee-
Again, you have no idea how much comfort you've given me. I've seen a urologist (surgeon), neurologist (check for brain aneurysms) and one nephrologist. The urologist doesn't know much about diet or drug recommendations - she just operates on kidneys - so she referred me to the nephrologist. The nephrologist asked me questions, never looked at my CT scans, MRI or blood work, gave me no advice and told me she would check my blood again in three months. I have since been referred to another nephrologist who I won't see until the end of July. I'm hoping for better results. I don't think it's fair to give a patient this diagnosis and then leave them with no info on how to prevent the disease from possibly progressing. Also leaving me in limbo with regard to hypertension and depression. Again, sir, you have no idea how much you taking time to respond to my post means to me. I haven't been sleeping at night (no lie)!
I have read about tolvaptan, but wonder how many years it will be before it becomes available. Exciting stuff, for sure.
I have read about tolvaptan, but wonder how many years it will be before it becomes available. Exciting stuff, for sure.
Hello again,
From your family history, it would appear that you have the PKD2 variant. This form of the disease is generally more indolent and many patients never go on to develop end-stage kidney disease. While your father was not old enough to view the natural history of his illness to prove this fact, his parents did not sound like they had significant disease, and given the fact that the diseases autosomal dominant, one of them very likely had it.
Therefore, all of my advice remains the same from the original post. You will have to have your cyst growth and kidney function monitored. Only time will tell whether you are likely to progress although my instincts tell me you're not likely to do so. As well, there is a new medication available for patients with PKD called tolvaptan (see blog post), which in initial studies has been shown to delay the progression of PKD. It is still early in the lifecycle of this drug and we are learning how to prescribe it and to whom, but it is very promising indeed. I am glad that you are going to discuss this with your family doctor, but in addition you should also be followed by a nephrologist, ideally one with an interest in polycystic kidney disease.
Dr. Jordan Weinstein
From your family history, it would appear that you have the PKD2 variant. This form of the disease is generally more indolent and many patients never go on to develop end-stage kidney disease. While your father was not old enough to view the natural history of his illness to prove this fact, his parents did not sound like they had significant disease, and given the fact that the diseases autosomal dominant, one of them very likely had it.
Therefore, all of my advice remains the same from the original post. You will have to have your cyst growth and kidney function monitored. Only time will tell whether you are likely to progress although my instincts tell me you're not likely to do so. As well, there is a new medication available for patients with PKD called tolvaptan (see blog post), which in initial studies has been shown to delay the progression of PKD. It is still early in the lifecycle of this drug and we are learning how to prescribe it and to whom, but it is very promising indeed. I am glad that you are going to discuss this with your family doctor, but in addition you should also be followed by a nephrologist, ideally one with an interest in polycystic kidney disease.
Dr. Jordan Weinstein
Yes, I'm sorry, I thought I put that in the title of my original post. My father was diagnosed in his 50s when he was undergoing treatment for stomach cancer. He succumbed to the cancer. No one else on his side of the family was diagnosed with the disease, and his parents lived into their late 80s/early 90s, as did their siblings. My father had one sister, now 68 years old, who has not been diagnosed and seems to have no issues. I have one brother who has normal creatinine levels and no issues, but his 21 yr old daughter was subsequently diagnosed with PKD when she was being treated for something else. She also has no issues. I only found out I had it because I was having back pain (degenerative disc disease).
Hi Melissa,
You added a very important piece of information in your second post. You have polycystic kidney disease?
Do you have a family history? If so, when were your relatives diagnosed with kidney disease? Did they require dialysis, and if so, when?
Jordan
You added a very important piece of information in your second post. You have polycystic kidney disease?
Do you have a family history? If so, when were your relatives diagnosed with kidney disease? Did they require dialysis, and if so, when?
Jordan
THANK YOU! This is the most concise information I've gotten since I was diagnosed with polycystic kidney disease. My creatinine is 1.02 mg which is close to normal, and all of my other levels were normal. Otherwise, I am a very healthy, active individual. I will certainly discuss your hypertension medication suggestions with my family doctor when I see him next. I was on a low dose of the Wellbutrin, once a day, so I'm hoping I can go back on that. And again THANK YOU, THANK YOU for taking the time to response, and alleviating my stress; it really means a lot.
Hi Melissa,
The term CKD is thrown around very loosely these days.
Do not panic.
An eGFR of 59 is plenty of kidney function for a very long and healthy life. The key is preventing kidney function from worsening. A important variable is not the absolute level of your kidney function but how fast is it dropping. One determinant that predicts worsening kidney function is the level of protein in your urine. If very elevated, this would predict a faster decline. Patients with very minimal protein in their urine progress mores slowly, if at all.
Blood pressure control is important. HCTZ is reasonable drug but there are better ones including Angiotensin Receptor Blockers (ARBs), ACE inhibitors and calcium channel blockers. As well, long acting diuretics such as indapamide or chlorthalidone are better choices than HCTZ. Again, the BP drug choice will depend on how much protein you have; more protein would require ACE or ARBs to be used preferentially. Finally, the underlying diagnosis of your kidney disease matters as well, as treatment of the underlying condition (diabetes or lupus for example) would be essential to all of the above.
Most medications (such as the wellbutrin you mentioned) are safe to use at your level of kidney function but might need slight dose modifications - talk to your prescriber. NSAIDs are generally not a good idea for anything but short term use.
Oh, and you can drink coffee.
Dr. Jordan Weinstein
The term CKD is thrown around very loosely these days.
Do not panic.
An eGFR of 59 is plenty of kidney function for a very long and healthy life. The key is preventing kidney function from worsening. A important variable is not the absolute level of your kidney function but how fast is it dropping. One determinant that predicts worsening kidney function is the level of protein in your urine. If very elevated, this would predict a faster decline. Patients with very minimal protein in their urine progress mores slowly, if at all.
Blood pressure control is important. HCTZ is reasonable drug but there are better ones including Angiotensin Receptor Blockers (ARBs), ACE inhibitors and calcium channel blockers. As well, long acting diuretics such as indapamide or chlorthalidone are better choices than HCTZ. Again, the BP drug choice will depend on how much protein you have; more protein would require ACE or ARBs to be used preferentially. Finally, the underlying diagnosis of your kidney disease matters as well, as treatment of the underlying condition (diabetes or lupus for example) would be essential to all of the above.
Most medications (such as the wellbutrin you mentioned) are safe to use at your level of kidney function but might need slight dose modifications - talk to your prescriber. NSAIDs are generally not a good idea for anything but short term use.
Oh, and you can drink coffee.
Dr. Jordan Weinstein
- Page :
- 1
There are no replies made for this post yet.
