Hope for us all? LONG LONG LONG LONG TERM DIALYSIS

[obsidianom]

This abstract is self explanatory. Life can go on a LONG time and be successful even on dialyisis!!!!

Acta Med Croatica. 2012 Oct;66 Suppl 2:81-4.

[Long term survival patient on hemodialysis--case report].

 [Article in Croatian]

Orlić L, Sladoje-Martinović B, Cosić SZ, Maleta I, Vuksanović-Mikulicić S, Bubić I, Pavletić-Persić M, Racki S.


Source

Department of Nephrology and Dialysis, University Hospital Rijeka, Rijeka, Croatia. lidija.orlic@ri.t-com.hr


Abstract


BACKGROUND AND AIM:

The mortality of chronic kidney disease patients is very high. Patients on chronic renal replacement therapy are also et very high mortality risk. Nevertheless, by the advance in renal replacement therapy the surveillance of these patients could be long with reasonable quality of life. The present a patient on renal replacement therapy for more than 38 years.

CASE HISTORY:

Our patient was born in 1946. Twenty years later acute glomerulonephritis was diagnosed and he was treated with corticosteroid therapy for four years. Despite treatment his renal function deteriorated and haemodialysis was started in 1974. At that time, the haemodialysis regime was 12 hours two time per week and Kill dialyzer were used. Bicarbonate dialysis was introduced in 1984. Last 15 years our patient is on the hemodiafiltration. The treatment by erythropoietin was started in 1993. During this 38 years, he received two cadaveric kidney transplants. The first transplantation was in December 1974 in our hospital. Few days after transplantation he get rejection and transplant kidney never functioned. After one month he get thrombosis of the graft and transplantectomy was performed. The second cadaveric transplantation was performed abroad in 1985. Transplant kidney functioned only four days and fifth days urgent transplantectomy was performed. After these experience our patient decline any new kidney transplantation. First arteriovenous fistula was created at the time of start haemodialysis and was functional for 30 years. First arteriovenous graft was created after 30 years on the left forearm few years later on the left upper arm. Last graft has been in good function for six years. The last two years he has a central venous catheter. A subtotal parathyroidectomy was performed in 1983. After parathyroidectomy parathyroid hormone values were between 30 to 55 pmol/L, and the values of serum calcium and serum phosphate were in reference values. Last 15 years he had bone pain and before 10 years he had patlogical hip fracture. Due to vascular disease he often had skin ulcers and infections, particularly on the both hands. Very often he was treated by analgetics, sedatives, including opiates. Last severe complications was a bowel perforation, successfully treated by surgical intervention.

SOCIAL HISTORY:

Our patient graduated on the university. He is married and had one child. He has worked in the profession for several years. He was founder of association for dialysis and kidney transplant patients. Last twenty years he and colleagues conducted a private centre for haemodialysis. It was the first private centre in the country.

CONCLUSION:

Dialysis treatment sometimes can significantly prolong life, i.e. far more than expected in this group of patients and can offer appreciable quality of life.


PMID: 23513423 [PubMed - indexed for MEDLINE]

[jeannea]

I couldn't do dialysis for 38 years. I don't have the mental strength.

[MooseMom]

"...appreciable quality of life."  Two fistulas, one graft and now a catheter.  Skin ulcers on both hands.  I truly hope he is enjoying his life despite all of these challenges.  I wonder how his wife has held up through all of this.  Dialysis and its side effects can be a real challenge to a spouse as you no doubt know, ob.

[kristina]

Most interesting story because I also suffer from glomerulonephritis
and have been suffering from the same disease for many years as well...

I was diagnosed with chronic proliferative glomerulonephritis at my first (and only) kidney biopsy in spring 1972,
after my kidney function failed completely (uraemia, coma) in spring 1971. 
It took my body such a long time to get strong enough, so that my kidney biopsy could be taken...

Fortunately, in my case, the doctors did not put me on dialysis in spring 1971 during the time I was in the coma -
and after I came out of the coma the same doctors continued to observe me closely, whilst I remained in Intensive care.
They wanted to find out whether or not my kidneys might “pick up again” or not - and eventually my kidney function did pick up again,
slowly at first, but at least I could avoid dialysis ... ever since.

Of course, I had to take great dietary care (and other care) of my kidneys & my general health ever since,
but that was a very small price to pay in order to avoid dialysis...

Interesting to read how different doctors/nephrologists reacted differently to different patients suffering from the same disease, during the 1970’s...
I seem to have been very lucky and this patient here was not so lucky, but at least he is still alive...

Same disease, similar social history, same terrors of the disease, but different stories altogether...

[Riki]

I have a friend who is about a year younger than me.  His parents know that he'd have kidney issues before he was born.  He started dialysis when he was 2 years old.  He was on PD at first, but it didn't work out, so he started hemo, and he was still only a toddler.  I heard stories where someone had to hold him in the chair during his treatments.  He has no sites left for fistulas, and when I met him when he was 11, he was using a central line for dialysis, and that was before they were so commonplace.  He lived in the hospital as a child, literally.  He only got to go home on a weekend here and there.  He's now 34, he's had 4 transplants, none of them worked, and he can live at home now because the province built a dialysis unit in his town.  He still uses a central line.  I saw him on tv a while back.  He looks like a little old man, but he does what he wants, and he's well loved by his community.  A community group actually paid for him to go to Ottawa last year, to see the Senators play.  He's always been a big hockey fan.  He's a huge inspiration to me.  He's been through so much, yet every time I see him he's smiling.  Whenever I think about how long I've been on dialysis, my little over 9 years has nothing on his over 30 years.

[okarol]

One thing I find unusual, maybe there's a reason for it, as mentioned in the story "Last severe complications was a bowel perforation, successfully treated by surgical intervention." Recently I have heard of a number of dialysis patients who have had bowel blockage or perforations.

[jeannea]

Really interesting okarol. I wonder why that is. It seems like something they could be aware of and try to prevent.

[cassandra]

Maybe something to do with fluid restriction, and the common knowledge of 'experts' to not eat 'whole' foods, and veggies/fruits because of potassium?

[kristina]

After I was diagnosed in 2006 to be in end-stage renal failure with only 6 months to go ‘til dialysis,
I made an urgent appointment with a dialysis training centre,
where patients are trained to become independent and do their own dialysis at home.

A very kind nurse showed me all the procedures, their different machines and how everything works
and there were also two patients doing their training.
I remember the nurse telling me that it was very important that dialysis patients “go regularly” every day
because of the remaining dialysis liquid in their body.
She pointed out to me that it was very important to “go regularly” because otherwise medical complications could develop very easily.
(She was speaking as an experienced dialysis nurse).
 
I remember being very shocked about her remark,
because until then I had thought that dialysis patients “only” had to care about hygiene,
their liquid-intake, body-weight and needles etc.

It became clear to me that there was so much more involved
and the experience of me looking around and speak with the nurse and patients in this dialysis training centre
made me even more determined to try and find ways to stop the deterioration of my kidney function 
and to continue with my boring special vegetarian diet without any food-variation under all circumstances
and to remain pre-dialysis for as long as possible.

Whenever I get tempted about any other food, I think every time what the nurse
and the two training patients in that training centre have told me and any food-temptation vanishes straight away.

[noahvale]

**

[jeannea]

I always thought that worrying about constipation was one of the quirks of PD. The treatment doesn't work as well if you're constipated so the nurse is always checking with you about it. I hated having to think about that all the time but maybe it turns out to be helpful for PD patients. I took Renvela but also had to keep good track of regularity or lack thereof. I was only on hemo 6 months and I don't remember if anyone asked me about it.

[Riki]

After reading all that, I'm glad I don't take binders anymore

[kristina]

One thing I find unusual, maybe there's a reason for it, as mentioned in the story "Last severe complications was a bowel perforation, successfully treated by surgical intervention." Recently I have heard of a number of dialysis patients who have had bowel blockage or perforations.

One cause may be the popularity of the binders Renvela (Sevelamer Carbonate), Renagel (Sevelamer Hydrochloride) and Fosrenol (Lanthanum Carbonate).   

FOSRENOL may cause a bowel blockage or severe constipation which can be serious, and sometimes lead to surgery or treatment in a hospital.  You may have a higher risk of bowel blockage or severe constipation if you take FOSRENOL and have:

• a history of bowel surgery or colon cancer
• a history of bowel blockage, decreased movement of your bowel, constipation, or diabetes

http://www.fda.gov/downloads/Drugs/DrugSafety/UCM271798.pdf

Renvela/Renagel:

•  Sevelamer is contraindicated in patients with bowel obstruction.
•  Caution should be exercised in patients with dysphagia, swallowing disorders, and severe gastrointestinal (GI) motility disorders, including severe constipation or major GI tract
   surgery.
•  Common adverse events reported with sevelamer include vomiting, nausea, diarrhea, dyspepsia, abdominal pain, flatulence, and constipation. Other events reported include pruritus,
   rash, fecal impaction and, less commonly, ileus, bowel obstruction, and bowel perforation.

http://www.renvela.com/patients/about-renvela/important-safety-information.aspx

Thank you noahvale for the information,

it is very much appreciated.

Kind regards from Kristina.