I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: pjclutterbuck on April 02, 2017, 01:17:21 AM
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Kia ora from Wellington, New Zealand! I am approaching my 44th birthday, and was born with spina bifida and renal hypoplasia and dysplasia. What I had in place of kidneys failed when I was 14. I first started dialysis at the age of 16, in 1990. I was living in Christchurch at that time, and trained on a Cobe Centry 2 machine, which were replacing the old Drake-Willocks that Christchurch Hospital had used since 1968. I received my first kidney transplant that same year, 29 October 1990, which was the best day of my life.
At the end of 1999, my first kidney started to show signs of poor blood pressure control. Over the course of the next 2½ years, it progressed to congestive heart failure and I restarted dialysis on 22 March 2002. By then Christchurch was using Fresenius Model 4008B machines, which were a huge advance on anything else at the time. Automatic timers for UF and the heparin pump, and electronic keypads for entering the exact amount of fluid to take off. These were a real marvel of new tech. I continued on dialysis for almost exactly 18 months, having my second transplant on 23 September 2003.
In 2014, after being kicked out of a student flat and spending 6 weeks living on the streets of Wellington, couch-surfing and living in backpackers, I moved into a run-down old house on top of an earthquake faultline in the beautiful Oriental Bay. Soon after moving in, I discovered the house was overrun with rats and mice. In the process of removing rodent excrement, I was hospitalized with green diarrhoea and pancreatitis, and diagnosed with cryptosporidiosis. Not having access to anti-parasitics in NZ, I stopped my immune suppression and started taking Reishi and Shiitake mushrooms to activate the T-cells that had been suppressed by tacrolimus and mycophenolate mofetil. Needless to say, although I survived the parasitic illness, the kidney went through a rejection episode and started passing blood by Q3 2015. I had already started dialysis about a year before it was decided that the kidney had to be removed. The second transplant was taken out in November 2015.
In April-May 2016 I had 4 open-heart surgeries to have my mitral valve replaced (there were several complications, including clots, a pericardial effusion and a Staph infection). I dialyze at Kenepuru Dialysis Unit most weeks, with occasional visits to Wellington Hospital Dialysis Unit as an inpatient or for observation.
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Hi pj,
Welcome to IHD. We are always glad to receive fellow kidney sufferers to the Family.
You are very fortunate to still be alive. You have had a few very close brushes that could easily have ended your life. I am sure you're determination made a deciding difference. Although I never would have ever thought of using mushrooms to aid in overcoming an infection. If infection is the right word.
I can understand how easily a person taking the anti-rejection med can be suseptable to many things that most others may be able to shrug off. That had to be a tough time. I'm glad you have managed to get through it.
Myself I am still very new to Hemo, starting only this past Dec. I had been on PD for over 3 1/2 years and caught a nasty infection that wouldn't clear up, forcing me to lose my PD Cath. Stilll waiting a date to have an access created.
Take Care,
Charlie B53
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Welcome.
I read on this forum that most dialysis in New Zealand is in-home, is that not the case? Just this week I've been wondering if its all in home how they handle the elderly and infirm people with in-home treatments. In my center there are a number of patients who would not be able to do in-home treatment without a helper.
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Welcom to the site pj
:welcomesign;
Jeeez what an intro.
Take care, Cas
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:welcomesign; Welcome to the site. Hope you will like your new family here, they do all they can to make you feel comfortable!
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In my center there are a number of patients who would not be able to do in-home treatment without a helper.
One of the big barriers to home hemo in the US is that the big chains do not allow it without a helper at home - even if the patient is capable of doing it solo. In my opinion, this blanket policy fails to allow a reasoned balancing of the risks of solo treatment with the known advantages of home treatment.
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Home hemo by your self seems to be a State by state issue, upstate ny it's encouraged especially in the Adirondacks where some patients have a 90 mile trip one way.
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Home hemo by your self seems to be a State by state issue, upstate ny it's encouraged especially in the Adirondacks where some patients have a 90 mile trip one way.
NY is unique - in a good sort of way. Regulations in NY require that home dialysis support include real time remote monitoring, which gives clinics more leeway to allow partnerless hemo.
NY also is rather strict on clinic regulations. Here in the DPRM, techs can give heparin at the start of an in-center treatment. In NY, an RN has to do that part because techs are not licensed to dispense drugs.
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Welcome, PJ!
I hail from the state of Tennessee, but will be in Wellington in about 2 weeks! I'll wave at you! :welcomesign;
Aleta