Newbie from Michigan Diagnosed as Stage IV

[Sibella]

My husband and I are retired. I am 69. Last year in the fall I had my blood drawn in preparation for a once a year Reclast infusion (my first) for osteoporosis. Everything was normal. This fall it was time for a second dose; but when I had my blood test, everyone went nuts. Suddenly I was Stage IV (GFR 22-23). I was scheduled for a biopsy but when they took my blood pressure in early December, they said my blood pressure was suddenly way too high. None of tests so far show any reason for the kidney failure. And, OMG, the blood meds made me so sick. I have met with a dietician and altered my diet. I've had my education on types of dialysis. My husband and I had planned a vacation for February and so far it looks like we can go. I feel pretty much all right, but the doctor wants one more blood test before we leave town. I will finally be having the biopsy in early March after we return. Thank goodness, I found this site and it is awesome. I have been lurking a bit and have had a lot of my questions answered. Hope this isn't too much information.

[cassandra]

Welcome to the site Sibella, I hope you get to enjoy your vacation.

       


Take care, Cas

[Jean]

   to IHD and I hope your kidneys hold out long enough for your vacation. I stayed at your stage for 7 years, and still am in it. Good luck to you.

[iolaire]

. My husband and I had planned a vacation for February and so far it looks like we can go.

Welcome. If you end up on dialysis it's not the end of vacations. I am writing this from Santiago, Chile far from my home base right outside of Washington, DC. It takes a little planning and you will need to think about your insurance coverage outside of the country.   But to date in Singapore, South Africa and Chile the price is under $300 which is much less than what they bill my insurance in the U.S. 

[Darthvadar]

Forgive the delay in my wishing you a warm  to IHD...

Just got my laptop back after the hard drive gave up the ghost, and had to be replaced....

Hope to see you here often...

God bless...

Darth... Moderator...

[Sibella]

Thanks for making me feel welcome. I think it's going to take a little getting used to learning to communicate on this forum so please forgive any mistakes in etiquette!
One more blood test this week and then we leave. I've identified a nephrologist where we're headed and located the closest hospital just in case. Watching my diet and the meds are keeping my blood pressure in line.
I had pretty much given up the idea of traveling abroad but it looks like planning and determination can make things like that happen. After reading about what others have overcome is inspiring!

[Sibella]

The doctor requested another blood test before we take our vacation in warmer climes. I got the results today and my creatinine went from  2.2 to 1.9 and my GFR from 22 to 26. It looks like the diet and better choices as well as getting the blood pressure under control got some results. It buys me some more time.

[Michael Murphy]

Some of us skated for years on the path to dialysis.  I was around 50 when I started hearing that my kidneys were a problem and the constant drone of this isn't good became easier and easier to tone out.  The only consession I made was to have a fistula installed about 4 years ago.  Other than that I just kept on trucking.  What I am basically saying is that you can be on the verge of renal failure for years.  Which is what I hope for you.  However you appear to be smarter thn I was and are learning now what you would need to know if thing get worse.  I was terrorized going to dialysis and while I would not recommend dialysis as a spa day I found the fear much worse than the reality.  I think if you watch your diet and take care of your self you can have many good years before you cross the dialysis threshold. 

[kristina]

Thanks for making me feel welcome. I think it's going to take a little getting used to learning to communicate on this forum so please forgive any mistakes in etiquette!
One more blood test this week and then we leave. I've identified a nephrologist where we're headed and located the closest hospital just in case. Watching my diet and the meds are keeping my blood pressure in line.
I had pretty much given up the idea of traveling abroad but it looks like planning and determination can make things like that happen. After reading about what others have overcome is inspiring!

Hello Sibella (lovely name!) and welcome to IHD...
Don't worry too much about the "etiquette" on IHD, we understand and we also know,
that sometimes, when we don't feel well enough, mistakes can easily happen ...
You can find here lots of useful patient-information and this, combined with other information on the Internet,
can provide us to become informed patients, which again provides us with greater chances to find ways forward ...
God luck and best wishes form Kristina.

[Sibella]

We are just finishing up our vacation and I have felt pretty good all month. I visited both the DaVita and Fresenius Dialysis places here in the Gulf Shores, Alabama area just in case I need them next year. I have found it very difficult to make good choices with so much eating out but I have tried. We'll see how successful I've been when I get back to Michigan.

I think the reason why the doctor thinks I will need dialysis soon is because I went from no kidney problems to Stage IV in one year.

[Sue]

Hi Sibella, welcome  

[Angiepkd]

Welcome, Sibella!  Hope you can keep those numbers down for a long time!  Glad you had a good vacation!

[iolaire]

We are just finishing up our vacation and I have felt pretty good all month. ... I think the reason why the doctor thinks I will need dialysis soon is because I went from no kidney problems to Stage IV in one year.

Glad you had a good trip.

When you say doctor are you talking about a nephrologist?  I hope so.

I feel fortunate I was able to see a nephrologist for seven years before I started dialysis.  He told me to get listed for a transplant early and to get my fistula put in prior to starting dialysis.  I felt good for both since I received a transplant call weeks before starting dialysis and a well developed and healthy fistula when I started dialysis made that transition easier.  (Now 1.5 years after start of dialysis and 3.5 years on the list I'm still waiting for my transplant, but not in a huge hurry since dialysis is working for me - including travel.)

Also my nephrologist kept telling me that I'd know when its time to start dialysis and that my physical feeling meant much more than my lab numbers. I had lower energy for years, but just before I started I had itchy or legs that just felt off at night which made it harder to go to sleep, in retrospect that was the signal from my body that it was time for dialysis...  Instead of noticing the change in my body over a few weeks, they decided it was time when I was in the hospital for an bleeding ulcer.

[Sibella]

Yes, when I wrote doctor I meant nephrologist. Although I have felt pretty good, I am experiencing the itching (after all I am stage IV). Biopsy is set for next Wednesday morning. They tell me it may or may not indicate what caused the failure. Another blood test and visit to the neph of Monday to see if my blood pressure is under control. The little automatic machine my husband bought seems rather random. I'm taking it in to let the doctor see it.

[Sibella]

Had the kidney biopsy yesterday morning and although there was some residual bleeding was able to come home after two hours in recovery. I don't meet with the doctor until March 23rd. I'm just keeping on keeping on.