Looking for Peer Support - Chronic Kidney Disease

by Mary
(Michigan, USA)

I am looking for peer support from people who have chronic kidney disease.


Last year I was diagnosed with diabetes type 2 and high blood pressure. I was also diagnosed with stage 1 chronic kidney disease.

My name is Mary and I live in Michigan, USA. I am married and have 3 children 2 boys and 1 girl. I will be 39 years old in October!

Mary

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May 15, 2019
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CKD since childhood
by: Marie

Hello to everyone!
First of all, thanks for providing the opportunity to share the load by means of this forum! Every now and then i am searching the web to find patients who share their story and it surprises me that the information in find is very sparse. Especially when it comes to cognitive decline, even the academic textbooks remain quite vague.

My kidney story began when i was about eight years old. Recurring and partly untreated urinary tract infections combined with a vesico-uretral reflux (urine going up from the bladder, back into the kidneys) partly destroyed my kidneys and left me with a reduced function. I was diagnosed only when my blood pressure went up so high that i fell unconscious and had focal seizures. My optic nerve was affected as well, leaving me close to blind for a couple of days after i regained consciousness. The doctors took a probe from my kidneys to determine the diagnosis. I had to take a lot of pills, which i had to take on up to 5 timepoints during the day. I used a casio clock on my wrist to remind me to take the pills. As i grew older, the medication was reduced, especially when i was allowed to take "adults" medication. Apart from the pills i didnt really have any symptoms, my filtration rate was above 60 ml/ min and i was able to finish school and the studied medicine, started working in a neurology department at a public hospital. The problems only started when i got pregnant. Having studied medicine of course i knew what the risks were and looking at my little daughter i don't regret my decision. BUT. For my kidneys it was a turning point. During the pregnancy i had to take methyldopa, a drug that is almost antique. It has some side effects that annoyed me (nightmares, dry mouth) but were ok. What worries me a little is that it contains aluminium hydroxide. Since the time where dialysate substances containing aluminium caused cognitive decline in ckd patients the substance causes a lot of controversy. Anyway, the pregnancy ended without complications only two weeks pre term. Because of contraindications for beta-blockers i continued methyldopa to be able to breastfeed my daughter. The drug induced a very high milk production, which was very uncomfortable, painful and causing my weight to drop well below the level i had before i got pregnant. Had i known theses things beforehand, i would have tried a different medicatiion.
When my daughter was nine months old, i went back to work at the hospital, and we quit breastfeeding, so i could get back on my standard medication (ace-inhibitor plus calcium-antagonist). At work, i was not able to concentrate and my memory was not functioning well. No-one at work was intereted to hear about my problems, and i was practically fired because of incompetence after 2 weeks. I think the sleep deprivation alone was enough to cause this kind of problem and this could happen to any mother. Nevertheless it was expected of me ( with only one year of experince in the field anyway) to be able to run the emergency room of the neurology department on my own. I then turned to teaching foreign practitioners the mysteries of my mothertongue and finally got a one-year grant to do research in the department where i had in the meantime successfully completed my doctoral thesis.
And then...? Today (my daughtrer just turned two) i am 31 and my GFR is around 50 ml/ min. I start to have symptoms. The most relevant for me is the fact that i often feel tired and listless, without power. I have developed hyperuricaemia, which adds to the tiredness and also causes joint pain; sometimes my appetite is all but gone. But lluckily i'm in good spirits most of the time. I spend my free time outdoors or making music with wonderful people. I try to talk to my friends about my health problems in order to give them the opportunity to help. I have learned by now to ask others for help and started to think about the future in a constructive way. The questions that trouble me most these days concern my perspectives in working life. I am convinced that i will not be able to continue my work in research for a very long time as i expect my cognitive abilities to decline. I try to keep my mind open and change perspectives. So i think that i can still go back to teaching when things get worse, but i try to make the most of what i have here and now.
I hope my story can inspire others and help to adapt life to living with CKD.
Wish you all the best.
Marie

Sep 05, 2013
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In Support of Mary
by: Charlene Crosthwaite

I just read your posting.
I too have high blood pressure and type 2 diabetes. I don't have chronic kidney disease though. However, this year was one plagued with kidney issues which started with a kidney mass and a kidney biopsy. The mass turned out to be benign. Thank goodness! For two weeks we worried about the what ifs. It's enough to drive you crazy. I felt fortunate, but it also made me stop and take a look at my life and how I'd been living.
You see over the past seven years we've lost several good friends and relatives. Two of the closest being my Dad and my husband's cousin. Both were diabetics, but his cousin also suffered from chronic kidney disease.
Then in December I had to have shoulder surgery. Thinking...no big deal I'd been through it on my right shoulder...ten weeks later I was back to work. Well not this time! Just months into recovery that surgery, we find out about the mass and then I end up with a kidney blockage!
I'm thankful my children are all grown. Our daughters and granddaughter have been wonderful through this whole mess. I'm finally seeing the light at the end of the tunnel. Have I been down in the dumps during this...Yes!
By reaching out to others, you've already taken steps in a positive direction.
My husband's cousin lived a full life. She was married to her husband for 50 years. She worked a full time job and raised two sons. One of her sons was born with a heart condition. He married and had two children, but died in his 30s. His daughter stood by her grandmother right till the end. GeGe loved life and family. Diabetes tried to rob her of her vision and nearly won, but she fought back. She suffered a massive heart attack before her diabetes was under control and then nursed her husband through his fatal bout with cancer. Never did they think that she would outlive him! But life has a funny way of happening sometimes.
Although you were diagnosed much earlier than she or I were, don't look to the negative...look to the positive.
My problems MADE me really look at what I was doing by not taking more time to take care of myself. I have begun to watch my diet and have actually lost almost twenty-five pounds since May. I still need to lose lots more, but even taking little steps makes a difference. My blood sugars are much better and my blood pressure too. With the issue of the kidney stones, I'll have to modify my diet even more, but I have things I want to do and I plan to be here to do them.
I've seen my brother-in-law beat prostate cancer and my mother breast cancer. I've lived through my grandmother and mother-in-law dealing with Alzheimer's disease and I'm now watching my husband in it's early stages! Still I believe that everything GOOD & BAD happens for a reason.
I also found out this year that some tests, like a CAT scan with contrast can cause your blood sugars to skyrocket.
With diabetes and obesity on the rise, kidney disease is sure to follow if it hasn't already!

Jun 19, 2013
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Welcome To This Kidney Forum!
by: Site Admin

A chronic kidney disease diagnosis can be very difficult for some people. There are psychological issues and emotional issues to deal with; there are physical and medical issues... as well as financial issues.

At this time, it is important for you to have the right perspective to effectively deal with this challenge. It is especially important to regulate your blood pressure and blood sugar... Diabetes and high blood pressure are the leading causes of chronic kidney disease. It is also very important to pay special attention to your diet.

Please follow the advice of your doctor.

I hope that many of our visitors will respond to your request for peer support. Having the support of family, friends and those who can personally share in your experience goes a long way. Just knowing that there are others who face the same challenges, and learning from their experiences, provides enormous psychological and emotional support... it makes the burden a bit easier to manage.

Mary, let me take this opportunity to congratulate you for being the first person to make a submission to this kidney forum. On this entire planet, only you can ever claim (or even boast) of being the first to submit an article to this kidney forum. This is a brand new feature of this website that provides a platform for visitors to collaborate, interact and share.

Thank you for taking the time to write and participate in this forum. I trust that you and other visitors will find this forum useful. Hopefully, this will become a place where you can offer and receive help, support and advice.

Please take good care of yourself!

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