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It was about 7pm and my phone rang. I almost did not answer it because I didn't recognize the number, here it was my SD Dr calling from her home. I had a 24 hour urine catch done because my regular urine test was abnormal. And this is what she said:
Protein levels maximum count should be 150 mine is 287
Creatine clearance (no idea what that means) maximum count should be 100 and mine is 237
She wants me to see a Nephrologist asap as she is concerned that the Scleroderma is damaging my kidneys and that I am starting kidney failure now.
Also, went for my regular CT scan of my lungs and was told I have some other lung disease on top of the pulmonary fibrosis, don't remember exactly what he called it interial or something like that. And that there has been significant changes since my last scan in January.
Does it ever stop getting worse???? Feeling very frustrated. Every time I regain my positive attitude something knocks me back down again.
Top it all off today when I came home from getting scan done my water was turned off, because they couldn't wait for payment until i got my SSD check. Very upsetting when I called the office and explained my situation and explained as soon as i got my first ssd check i would pay the bill in full. The womans reply was “when you get your check, you will get your water back on” I understand they are only doing their job and i wasn't looking for them to turn their head and turn water back on. But is it to much to ask for a little compassion when she responded back????
Sorry to vent. Just Not dealing well with all the land mines I have walked on today.
Hugsss to you all
Terri
Terri,
I'm so sorry that you are having such a hard time. I will keep you in my prayers. Please let us know what you find out from the Nephrologist.
Lori
Hi Terri,
What an awful day, so sorry. It's tough enough but it makes it worse when people are so dispassionate toward those who need help. It only increases our feeling of being alone. The good news is that you are not alone as there are plenty of friends here who will listen and help. Wish there was more that I could do to help. I was worried that your kidney labs would come back abnormal, I'm sorry it wasn't better news. Same for your chest x-rays. I've read many posts from people with SD that were very sick and are now doing much better. Don't give up- you're kinda in the middle of this whole process. You're in my thoughts,
linda
Hi
Interstitial Sp? lung disease is a catch phrase for many problems with the lungs –pulmonary fibrosis falls into that category as does other inflammatory issues —there are new drugs available and ongoing studies that show much promise in treating this –one that comes to mind is Tracleer —I would think you might think of finding a medical facility that is more cutting edge –Such as a University Hospital –Does the U of Buffalo have such a facility ??
Richie
Oh Terry, bless your heart. Even though your world is crashing in on you right now, all of these things can be dealt with. If you can prioritize what you must do immediately and dump the rest you can win this fight, one battle at a time. Try to look forward and know there will be better days ahead because AP works!!!
Wishing you all the best…….kim
Hi Richie
Yes Buffalo does have a University. I am scheduled for June 6th to be seen at UPMC (University of Pittsburgh Medical Center) But at the moment guess I have to focus on finding a Nephrologist here locally that is knowledgeable in Scleroderma, if not then I will have to travel once again to Pittsburgh.
I do a little better emotionally today. Guess I just bottomed out yesterday. And getting those urine test results back last night caught me off guard with everything else that had happened yesterday. Today I am expecting another call from Doc as I know when she gets to the office today my CT scan results will be sitting on her desk. So at least I am prepared today for the phone call unlike yesterday.
I would like to thank everyone for the words of encouragement and support on here. Most people unless they are ill themselves dont understand just how physically, emotionally, and mentally draining this disease is.
Hugssss
Terri
you are so right terri,i had a bad yesterday too although not as bad as yours. it is hard trying to remain positive with so much negative news around us. it is so hard to be without water of all things, i hope things turn around for you today and some good things happen
sue
Hi Terri,
I also have pulmonary fibrosis and went for cytoxan for two years(not recommended). I also tried the Tracleer and it did not work. It wasn't until I added the Zithromax to the Minocin that I started getting better. It is a long fight when our diseases are well advanced, but I can definitely give you hope as I was a very sick person and I now continue to improve.
All the best,
Karen R
Just a quick question, Terri. Can the water company turn your water off if you are on disability?- I've heard that some gas companies in the winter can't discontinue your service. I know when we feel lousy it's doubly difficult to stand up for our rights, but it seems to me that water is a basic need that shouldn't be denied, esp. to those who are ill. I'm glad you're feeling a little better today.
linda
Hi Terri,
So sorry to hear your tests came back with such shocking results. Try to hang in there until you can get to the specialist for your kidney's. There seems to be a drug for everything these days. It's a crappy deal, no way about it. You're in my thoughts and prayers. This could happen to any of us SD'ers. We would all feel just a bumbed out and scarred. Lean on us and all other sources of support right now. You're not alone. Take Care!
Peace & Hope always,
Steph
Well I did call my water company and they told me that I had already used my 30 day medical emergency. How could that be???? I NEVER signed anything, NEVER requested it, NEVER contacted my doctor and NEVER told them who my doctors are or what illness I have. BUT thankfully my dad paid the bill today for me and my water is back on this evening.
I got a appt with a local Nephrologist for the 18th. Only thing that concerns me is I have no idea if he knows anything about SD. But atleast I got in within 2 weeks instead of several months.
Guess the stress of it all really knocked me down as I slept today from noon till 6pm. Just totally drained. But I am working on getting that positive attitude and ready to kick *ss with this SD again.
Thanks to you all
Terri
Terri,
I am going to send you a PM (personal message) – keep a lookout when you login – I just saw your post today (April 14) and have some info.
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