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Kidney failure


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#1 Glenwood

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Posted 01 April 2008 - 04:01 PM

Hello everyone,
I'm new to the forum, actually just located this today. I also found out recently that my mom has been keeping her increasing creatinin levels to helself and my dad and technically she started into acute failure months ago. She is now about 4.5. I had no idea what this meant so I started searching for answers today and decided to join the forum to seek any additional insight on what to expect.
I say "expect" because she refuses dialysis. She was diagnosed with scleroderma almost 20 years ago now. A few years later she went into a sudden kidney failure and we were told to prepare for the worst then because she refused any extraordinary life saving and signed a DNR. They predicted her death within the week. She received last rights, we called in all her friends from around the country and were preparing her funeral. Suddenly (many would say miraculously, but I'm sorry I don't have the faith), she recovered.
Since then it's been up and down over the years. She went through a bad bout over a year ago and dropped to about 87 pounds.
I've always felt a little helpless over the years and now I'm feeling guilty that I didn't do more to find out more about what was really going on with her too. I've just let my dad handle it. Last year I did start some research and convinced to test for celiac but it was negative and she vowed to not continue tests or new drugs or anything "out of the ordinary".
So here we are now and after going to the ER for a non related issue they found out her PH level was almost off the chart and her creatinin is going up more quickly than her doctors expected.
If anyone can refer me to more detailed information or offer thoughts on my situation I would be most appreciative.
Thank you and I offer my support to anyone suffering with this far too unrecognized disease!

#2 jefa

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Posted 02 April 2008 - 12:20 AM

Hi, Glenwood, and welcome to the ISN Sclero Forums. I am so sorry to hear about the problems you and your family have had and wish you could have found us sooner. I don't personally know anything about kidney failure, but you should be able to find some information on our Kidney (Renal) Involvement page. How old is your mother, if you don't mind me asking?

It is always painful to accept when a close friend or family member makes a decision not to fight for life. Sometimes we feel the need to try to inspire them but often it is more because we just don't want to let go. It's hard to know what to do. This is from our Emotional Adjustment and Scleroderma page:

Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness. Adapted from the book After the Diagnosis : From Crisis to Personal Renewal for Patients With Chronic Illness by Dr. JoAnn LeMaistre.

Please do ask questions and keep us informed on how your mother is doing. We will do all we can to help you cope in whatever ways we can.
Warm wishes,
Jefa

Carrie Maddoux
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#3 Sheryl

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Posted 02 April 2008 - 01:10 AM

Glenwood, Welcome to our forums. You should be able to find so much information on kidneys and PH within this site. I myself don't have kidney or pulmonary involvement at this time so not of much help. Others may offer you suggestions to help you with caring for your mother. I am so glad you found us. Sheryl
Strength and Warmth,
Sheryl

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#4 janey

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Posted 02 April 2008 - 05:38 PM

Glenwood,
I'm glad you decided to join the ISN forums. Carrie has provided a great link that I hope you take a look at. There is a section on treatments that take you to studies and research completed on scleroderma related kidney failure. There might be something new there that your mother would be willing to try. You might also look into seeing if there are any kidney failure or dialysis support groups in your area. Your mother may need to hear from people going through the same problems and decisions that she is having to face. It always helps to talk to people that understand personally what you're going through.

You mother is lucky to have you as her advocate. I know how hard it is for you both.

Big Hugs to you and your mother,
Janey Willis
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#5 Glenwood

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Posted 03 April 2008 - 04:41 PM

Thank you all for your kind words and suggestions. I actually spent more time researching after I joined and found and reviewed some of those suggestions. I am happy to report that she came home from the hospital today with acute psnomonia. Her kidney and PH levels actually improved over the day. It could be that the steroids they injected, against her will when she was admitted to the ER, may have spike her levels. Although out of the woods for right now on that front she has to get her strength back from the broncial muck now.
She's very annoyed and frustrated and I found to be no comfort when I visited her. She hates doctors and hospitals and unfortunately will not be willing to try any new therapies. Years ago I tried to encourage her to join a study going on with a specialist at CU Med in Denver, but she would have nothing to do with it. She's a very stubborn person who has resolved herself to just sustaining until it's over. As saddened as I am, there is nothing more I can do to help her except listen and be with her.
BTW, Jefa, she is in her late 60's. Thank you again and I will continue to listen and blog.
Glenwood

#6 Sweet

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Posted 04 April 2008 - 04:47 AM

Hi Glenwood,

Welcome to the Sclero Forums. I see you have already received some great advice, so I will just welcome you and hope that things smooth out for your mom. I'm happy you are here trying to find answers and support for her.
Warm and gentle hugs,

Pamela
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#7 debonair susie

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Posted 06 April 2008 - 05:59 AM

Hi Glenwood,

I am going through threads I have missed and came across yours and flet the need to respond. My heart really goes out to you and your father. It must be so difficult feeling as helpless as you do, considering the circumstances. When faced with what feels like a brick wall, the only thing you can do... is work to salvage your emotional state. It's likely possible that your mom is feeling helpless and probably depressed as well, in the face of all
that has gone on.

As you already can see, the links that Carrie (jefa) provided you, as well as the other helpful suggestions provided, not only by her, but also Janey and others in the group, it is crucial you care for yourself, at this time. Hopefully, you and your father can join together and gain the strength needed as you work through

As a "veteran"... in the "feeling helpless department", a person can only give their love and support to the caregiver and the person who is "afflicted". Your mom is no doubt exhausted and tired... of fighting these diseases. I'm sorry for you and your dad, that she chose not to "let you in", as emotional support can be a powerful thing, most especially, during times such as these.

I will keep you, your dad and mom in my thoughts during this time. Please... keep us posted, as to how you and your dad are doing, as well as your mom.

BTW... I am very glad you chose to be here and share with us.
Susie
Special Hugs,

Susie Kraft
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