Need to Chat

[ritisha10]

I have been sick for over 10 years and because I am a diabetic my symptoms were dismissed. Finally, they found I have a congenital narrowing of my ureter and because they did not find the issue in time; my kidney is destroyed. I am trying not to be angry at the lack of appropriate medical care and focusing my attention on the future. They also missed my iron dropping - all the way down to 7.5. Now that they have figured things out, I have a stint in from my kidney to my bladder. What I am seeking is -anyone who has had a stint and the issues that it creates. I have always been very active and trying to acclimate to this new condition is mentally and emotionally exhausting. Please - tell me your story. Thanks

[Charlene_Coxhead]

Hi ritisha10

I'm sorry to hear that you have been let down by the medical professionals and really do feel for you.

So my story, I'm a 39year old that lives in the UK alone and was diagnosed at the age of 21 with gfr of 20 and in stage 4 renal failure, to say this came as a shock as my first symptom was kidney stones which I passed and a funny rash on my hands. Well after a biopsy it turned out I was born with the condition and because it was detected so late I would end up on dialysis, so this was 2001 for me. In 2005 I had acute onset renal failure after getting shingles and was told if I made it 2009 without a transplant or dialysis I would be very lucky. I continued to follow everything my renal doctor told me in regards to diet and drink and the dos and don'ts and to try and stay active.

Well 2009 passed and I was doing ok gfr was 15 so pretty good so just kept doing what I was told. In June 2016 I was admitted with 21/2stone fluid overload which was pushing my chest and hard to breath and emergency dialysis was planned. However the renal doctor said he wanted to try diuretics to help. Luck would have it, it worked. Well in 2017 my health took a dip so took voluntary redundancy as my renal function was now 8 and was advised by my renal doctor to concentrate on my health and to stop pushing my body. I was prepared for dialysis and had my fistula done in the June 20017 and my parents started the long journey of being a donor or a paired donor but it wasnt to be which was harder on them than me. You see they felt guilty that I had this disease from their Gene's coming together and guilty because they hadn't noticed I had kidney disease, and then guilty because they couldn't help me. Fast forward to January 2019 and my renal function was 2.5 so I started haemo dialysis. Within 6 weeks I was fully trained and had all the equipment plumbed into my parents as they had space and I started dialysis at home in March.

I credit having a fantastic renal doctor and a lot of hard work but I did delay my renal disease. I know not everyone is a lucky even though they try.

Sorry it was a long story but I hope it gives you some hope.

Take care of yourself and to hope now you have the correct treatment you start to feel a lot better.

There is always someone here to listen and to support you

Take care

Charlene.

[Bassetmommer NKF Ambassador in reply to Charlene_Coxhead]

Charlene,

You truly are a Kidney Warrior. Amazing story. I hope life treats you well, now. Thank you for being a great advocate.

J

[Charlene_Coxhead in reply to Bassetmommer]

Thank you for your kind words

[Cancer2016]

I had to wear a stint for five months and while I’m grateful for a way to have corrected my gross hematuria, it was no fun! I carried on as best I could but most of the time I half expected to see it had poked thru my skin! Of course, it never did but sure felt like it! I’m sorry I’m not more positive for you.

[Gotthecall_123]

Hi my name is Dave ive been type 1 diabetic for 36 years i was diagnosed with CKD when i was 49 yrs old one day when i was 49 i decieded to start taking better,care of my self so i got new diabetic specialist went for blood test and next thing you know i was in neuphtolists office he toLd my kidney function was 12% 😬 you can imagine i couldnt believe what i was hearing. I had to start dialyses immediately so i had to choose PD or Hemo i chose PD to make a very long story short was on PD for 3 years then hemo for 4 yrs with many complications along the way but i had a transplant 1; year ago on may 24th and my journey isnt over yet but im 80% healthy again it just goes to show things do catch up to you if you dont take care of your self 😬 i know this isnt about a stint but i thought my story might give you some hope 💪🙏😝

[JimVanHorn]

Please read this entire answer if any of you have kidney disease and diabetes either type 1 or 2. I am a 74 year old survivor of prostate cancer with diabetes, kidney disease and heart disease. Two problems exist when you have diabetes and kidney disease. Insulin is inactivated in the kidneys. This keeps insulin from increasing in the body over time. When the kidneys are not working as they should the insulin in your body can keep increasing and your blood sugar can fall below 40. Especially if your are on a pump or using injectable insulin. You should have glucose tablets of 4 gm. available to you from the drug store for emergencies. Use 3 tablets to bring up your sugar level. Ask your doctor to lower your insulin level by calling on the phone, do not wait for your appointment. This happens when your creatinin level increases. Another problem is thinking you are "anemic". A normal kidney secretes a kidney hormone that tells your bone marrow to release mature Red Blood Cells (RBC). When you have a diseased kidney this hormone (Erythropoetin) is not released as it should be and your hemoglobin level may go below 10.0 . So the first thing the doctors do is check your iron levels. However, if this is your problem, go to an anemia clinic. They can give you iron I.V.'s over several weeks of 1/2 liter. Then they can give you injections of an artificial hormone. Three or four are available Epogen, Procrit and Aranesp. Each injection is about $350.00 but $65.00 on Medicare. When your hemoglobin goes about 13.5 with these drugs you can have a stroke. In your bone marrow there are extra RBC's that have a nucleus just sitting there ready to loose their nucleus (mature) and enter the blood stream. This hormone allows this to happen. In February my hemoglobin was 9.3 and now (after several shots every 4 weeks) I no longer need a shot and my level was 11.3 last week. I get tested when I see my Nephrologist. If you are on dialysis this is checked every time. I have not had a stint, but I had radiation that caused my urethra to only allow my urine to dribble out. Hold my urine in my bladder has cause me to have incontinence. I wish you well in finding answers, so keep asking questions and just keep on truckin'.