This story is ongoing and will be updated at least monthly until I successfully have a working kidney transplant, please follow my journey and share with me the joy when I receive the call telling me they have found a donor kidney.
The main reason for writing this piece is when I was diagnosed with Kidney Failure I tried to find out what it all meant so I searched the internet, so I have put a lot of info found on the internet here and also backed up with my own experiences, I hope it saves you a little time if your looking for information and gets you on the right track.
In my story you will see words inside "Quotation Marks" these will be linked to information related to it so click on the word and go to a new web site.
As you will read below, High Blood Pressure was the cause of my Kidney Failure and now someone else I know has exactly the same thing caused by High Blood Pressure, In my case and the other persons case we both told our High Blood Pressure was due to "White Coat Fever" if this happens to you don't accept it, seek a second or third opinion as if you do have High Blood Pressure the eventual outcome isn't very nice believe me.
I have started a facebook group for people in Western Australia looking for Information or help with Kidney Disease or Transplants in can be found buy "CLICKING HERE"
In The Beginning
I live in Western Australia and discovered my kidney problem at age 55 but I could have been on to it 2 years earlier which I will soon explain. I am male 180 centimetres tall (6 foot) and weigh around 90 kilograms (200 pounds) and like many Aussies I love a beer, I was a heavy smoker for 35 years and I gave up smoking cigarettes in 2011 when I turned 50, Cigarettes, Alcohol and Rock & Roll had nothing to do with my Kidney Failure directly anyhow, my problem was caused by "High Blood Pressure".
My story begins in February 2015, I passed a blood clot in my urine and also my urine was a very light red, I consulted Dr Google as people do and found it could be "Hematuria" caused by a "Urinary Tract Infection" (UTI), I booked an appointment with my General Practitioner (GP) and in short he thought a UTI and prescribed antibiotics, he also took some blood for tests and unfortunately I didn't get to see the results until February 2017, after prescribing pills and sending me on my way my GP said to come back if things didn't improve and as I had no more blood in urine I didn't go back.
The results of my blood test indicated I had stage 4 kidney failure in 2015 and the GP failed to pick this up or at least call me back and explain things to me (this is another story), if you are experiencing similar symptoms make sure you follow up with the test results.
The results of my blood test indicated I had stage 4 kidney failure in 2015 and the GP failed to pick this up or at least call me back and explain things to me (this is another story), if you are experiencing similar symptoms make sure you follow up with the test results.
My Symptoms and Diagnosis
5 Stages of Kidney Function
Symptoms is a tough subject mainly because I didn't have many until the very end, sadly this is generally the usual story with kidney failure that it isn't discovered until it's too late, in my case I was already at stage 4 failure before I went to the doctor (I will soon explain the 5 stages of kidney failure) and stage 5 before I actually knew I had kidney problems but I guess there must have been signs before February 2015 I just didn't know about them and like most males I have to be real sick before I go to the doctor.
The road to me being diagnosed starts in August 2016 when I had a car accident in which I broke the retina in my eye, a stolen vehicle pulled out in front of us as we were going through a green traffic light at 80kmh (50mph) and my head hit something in front of the car and my retina was detached, I only have 1 good eye as I have had a lazy eye since birth and unfortunately my good eye was the one that got detached, this caused great stress for me financially and mentally, we had to get lawyers involved to prove liability in hope of recouping the money we paid out through insurance which to date (April 2017) is over $20,000-00. Life carried on as normal and in January 2017 we went om a week holiday and on this holiday I was feeling very fatigued, it was a battle to put up our tent and one day we went for a walk along the beach I was battling to make it back and had to stop to catch my breath a couple of times, at the time I didn't think much of it and tried to perk my self up with energy drinks, during and after this holiday I found I was extremely tired by late afternoon and struggled to stay awake after 7.30pm. A couple of weeks after the holiday we went to a local "Beer Festival" and the next day I was extremely sick, not hangover sick I was very nauseous, vomiting and dry reaching and I had a bad metallic taste in my mouth plus passed another blood clot and had blood in my urine, I also had regular "Cramps" in my legs when in bed at night that would keep me awake.
I again consulted Dr Google with my symptoms and came up with possible "Diabetes" so I made a Doctors appointment for the next day. I thought the tiredness and fatigue may have been stress related and I was possibly suffering mild depression due to the car accident and my eye.
My regular doctor had left the practice which may have been a blessing in disguise as he failed to tell me about my condition 2 years earlier, I ended up seeing a young temporary doctor, she tested me for "Diabetes" and she almost instantly said that I didn't have "Diabetes" (this is a very simple test and takes less than a minute so if you have concerns then don't hesitate, go to the doctor), the doctor read through my history and then took some blood tests, she suspected kidney failure but needed to confirm and see what stage, I guess she already knew the worse by seeing my results from 2015.
I went back to the doctor 2 days later to discuss my blood test results and it was the worse news my kidneys were operating at about 6% capacity and toxins in my body were critically high, it was at this time I got to see my results from 2 years ago and then my kidney function was about 27% and toxins were a little high, the doctor refereed me directly to a "Renal Specialist" in turn he admitted me directly to hospital to have tubes inserted to commence "Dialysis", from being diagnosed with Stage 5 Kidney Failure to starting Dialysis was around 6 weeks so not much time to get your head around what's going on, this is why it is extremely important to act as soon as you can, if treatment for me started 2 years ago then things could be a lot different today, if you are lucky to have early symptoms or something shows in blood tests then act immediately do not hesitate, make sure you get referred to a specialist.
The road to me being diagnosed starts in August 2016 when I had a car accident in which I broke the retina in my eye, a stolen vehicle pulled out in front of us as we were going through a green traffic light at 80kmh (50mph) and my head hit something in front of the car and my retina was detached, I only have 1 good eye as I have had a lazy eye since birth and unfortunately my good eye was the one that got detached, this caused great stress for me financially and mentally, we had to get lawyers involved to prove liability in hope of recouping the money we paid out through insurance which to date (April 2017) is over $20,000-00. Life carried on as normal and in January 2017 we went om a week holiday and on this holiday I was feeling very fatigued, it was a battle to put up our tent and one day we went for a walk along the beach I was battling to make it back and had to stop to catch my breath a couple of times, at the time I didn't think much of it and tried to perk my self up with energy drinks, during and after this holiday I found I was extremely tired by late afternoon and struggled to stay awake after 7.30pm. A couple of weeks after the holiday we went to a local "Beer Festival" and the next day I was extremely sick, not hangover sick I was very nauseous, vomiting and dry reaching and I had a bad metallic taste in my mouth plus passed another blood clot and had blood in my urine, I also had regular "Cramps" in my legs when in bed at night that would keep me awake.
I again consulted Dr Google with my symptoms and came up with possible "Diabetes" so I made a Doctors appointment for the next day. I thought the tiredness and fatigue may have been stress related and I was possibly suffering mild depression due to the car accident and my eye.
My regular doctor had left the practice which may have been a blessing in disguise as he failed to tell me about my condition 2 years earlier, I ended up seeing a young temporary doctor, she tested me for "Diabetes" and she almost instantly said that I didn't have "Diabetes" (this is a very simple test and takes less than a minute so if you have concerns then don't hesitate, go to the doctor), the doctor read through my history and then took some blood tests, she suspected kidney failure but needed to confirm and see what stage, I guess she already knew the worse by seeing my results from 2015.
I went back to the doctor 2 days later to discuss my blood test results and it was the worse news my kidneys were operating at about 6% capacity and toxins in my body were critically high, it was at this time I got to see my results from 2 years ago and then my kidney function was about 27% and toxins were a little high, the doctor refereed me directly to a "Renal Specialist" in turn he admitted me directly to hospital to have tubes inserted to commence "Dialysis", from being diagnosed with Stage 5 Kidney Failure to starting Dialysis was around 6 weeks so not much time to get your head around what's going on, this is why it is extremely important to act as soon as you can, if treatment for me started 2 years ago then things could be a lot different today, if you are lucky to have early symptoms or something shows in blood tests then act immediately do not hesitate, make sure you get referred to a specialist.
The next section will try to explain how to best understand your test results and the different stages of kidney failure.
A simple enough blood test is done to work out your Kidney Function, the Kidney Function test is called "eGFR", eGFR stands for ‘estimated Glomerular
Filtration Rate.’ The glomerular
filtration rate measures how well
your kidneys filter the wastes from
your blood and is the best overall
measure of kidney function. It helps
to determine if there is any kidney
damage. If the filtration rate is low,
the kidneys are not working properly.
Normal filtration rate in young
adults is about 90–100 millilitres
every minute. It is difficult to calculate the exact
rate at which your kidneys are
working so a special formula has
been developed to estimate your GFR
(eGFR). This formula uses your age,
gender and the level of creatinine in
your blood to estimate your GFR.
Creatinine is a waste product made
by the muscles. It is usually removed
from the blood by the kidneys before
passing out in the urine. When the
kidneys aren’t working well, more
creatinine stays in the blood.
Your eGFR is reported in millilitres
per minute which is written as
mL/min/1.73m2
(the “1.73m2
” indicates
a result expressed relative to body
surface area). A normal GFR in a
young adult is greater than
90 mL/min/1.73m2
. eGFR results of
90 or greater may be shown on a
pathology report as the actual value
or as eGFR ≥ 90 mL/min/1.73m2
,
depending on the preference of the
pathology laboratory. If your eGFR is
less than 90, the actual value will be
shown. For example, a result of 105
may be shown as 105 mL/min/1.73m2
or as ≥ 90 mL/min/1.73m2
. A result
of 67 would be shown as 67 mL/
min/1.73m2
.
You don't really need to know the full formula just understand the numbers to see where you are at, the 5 stages of Chronic Kidney Disease (CKD) are:
Stage 1 With normal or high GFR (GFR > 90 mL/min)
Stage 2 Mild Chronic Kidney Disease (GFR = 60-89 mL/min)
Stage 3A Moderate Chronic Kidney Disease (GFR = 45-59 mL/min)
Stage 3B Moderate Chronic Kidney Disease (GFR = 30-44 mL/min)
Stage 4 Severe Chronic Kidney Disease (GFR = 15-29 mL/min)
Stage 5 End Stage Chronic Kidney Disease (GFR <15 mL/min)
You don't really need to know the full formula just understand the numbers to see where you are at, the 5 stages of Chronic Kidney Disease (CKD) are:
Stage 1 With normal or high GFR (GFR > 90 mL/min)
Stage 2 Mild Chronic Kidney Disease (GFR = 60-89 mL/min)
Stage 3A Moderate Chronic Kidney Disease (GFR = 45-59 mL/min)
Stage 3B Moderate Chronic Kidney Disease (GFR = 30-44 mL/min)
Stage 4 Severe Chronic Kidney Disease (GFR = 15-29 mL/min)
Stage 5 End Stage Chronic Kidney Disease (GFR <15 mL/min)
Clicking on each stage will take you to a full explanation on symptoms and treatments, when I was finally diagnosed my eGFR was 6 ml/min which shows your kidneys can be almost gone before you really know, 2 years ago my eGFR was 27, who knows where I would be now if we had acted in 2015, as you can see things can go down hill quickly so if you show any signs of CKD then go to the doctor and request a blood test and if you have Diabetes or High Blood Pressure have regular tests (At least Annually) and make sure you follow up and act on your results, quite seriously your Doctor may not fully understand the results so if you are at Stage 3 then request to see a "Renal Specialist" (In Australia you need to be referred by your Doctor to see a specialist, generally you can't make this appointment yourself, not sure on other countries so maybe people could comment below with information I can edit into this section)
Dialysis Isn't A Death Sentence
It's true, Dialysis doesn't mean you're at deaths door, from experience I can say Dialysis is a new lease of life. People have be known to live 30 years on Dialysis, for me I hope to get a transplant soon but for many a transplant isn't an option due to other medical problems. Dialysis does mean a huge lifestyle change, for me I am doing "Peritoneal Dialysis" which means changing 2lts (1 quart) of fluid 4 times a day, each change takes around 40 minutes and must be done in hygienic surroundings and great care taken that your hands etc are clean and sterile, clicking the link will explain fully about "Peritoneal Dialysis" To be able to do "Peritoneal Dialysis" you need to have a tube inserted in your stomach area just near your Belly Button, the operation is simple enough but if you are working allow 1 week at least off work and you are not able to shower for around 1 month, for me it was 2 weeks off work and then I was back on light duties only, my employer is very supportive and I live just a few minute from work so I can go home at lunchtime and do a bag exchange, I have 1 hour for lunch which is plenty of time to do the exchange, if you can't go home for lunch then you will have to find a quite spot at work you can do the exchange.
Why I chose Peritoneal Dialysis? My specialist basically chose for me after discussing it with me, you sure have more freedom as Dialysis happens whilst you go about your daily business, I can still work (but not lift heavy things), I enjoy kayaking and swimming which I can still do (for health reasons No Swimming in Public Pools) and we are even going on holiday oversea's, the other form of Dialysis is called "Hemodialysis" All know I know about Hemodialysis (HD) is that you don't have as much freedom, for me HD would mean me going to a hospital 50km's (30 Miles) away 3 times a week where treatment takes about 6 hours each time, Peritoneal Dialysis (PD) isn't for everyone and needs to be discussed with your specialist.
To be able to do PD you need to attend "Training" from when I had the tube inserted until the day I started training was exactly 1 month, training lasts 5 days with 4 days done at the Dialysis Clinic and the last day is done at home (For me home is 300km from the clinic so it was done at the place we stayed at). Training is from 9.00am to 2.30pm each day,try not to go alone, my wife came with me and it sure helps having someone to support you and also learn what goes on, if I feel a little low or tired my wife can help me set up, I think training would be difficult on your own so try and get someone to go with you like a partner, sibling or career or friend. After training you start doing 4 bags of fluid each day, for me I start bags at 5.30am. 12.00pm, 5.00pm and 9.00pm, I work from 7.00am - 3.30pm so these times work for me, as of today I have been on full time PD for 11 days and I feel 200% better, my skin colour is almost normal, my appetite is back an I can stay awake well past 7.30pm, I still feel fatigued and wear out easily if walking or doing chores, this mainly because I am very anemic, "Anemia" is basically a low amount of red blood cells (Click the link for full explanation), to fix this I will need to start regular injections of "Erythropoietin" (EPO), EPO increases red blood cells and was used by illegally by "Tour De France" Cyclist "Lance Armstrong"
EPO is a hormone you inject yourself with a small very fine needle into the fat on your stomach, I hope to start EPO within a week so will update how it all goes then.
Cost of Dialysis
One thing I wondered about when waiting to start Dialysis was the cost, all the operations, training, medication and appointments seemed like they would send us broke, the cost of PD in Australia is about $60,000.00 per year on it's own and EPO is $450 per injection, well I can say all I have paid for is prescribed medication which is about $70 per month, EPO for example is subsidised and cost $18 and everything else has been covered by "Medicare", this includes the original operation to insert the tube, appointments with specialist, training and dialysis supplies, so don't stress we are very fortunate in Australia to have such a great medical system. In Australia "Home Dialysis" deliver to your home free of charge all of the bags required for dialysis, cleaning products, paper towels they also supply an IV pole and heating pad for dialysis bags, you get regular calls )at least monthly) from customer service at Home Dialysis and they send supplies needed, I also get regular calls (weekly) from my Dialysis Clinic to see how things are progressing, I'm not sure how things work in other countries so maybe people can comment and let us know, as I have said we sure are very fortunate in Australia, I know we all complain about paying the Medicare Levy but for me I can sure see the benefits, not many people could afford to do this without Medicare and Home Dialysis support and many would have a death sentence with kidney problems if they had to go alone. The only thing that was essential that I have paid for was a set of digital bathroom scales and a blood pressure monitor.
My Home Dialysis provider is "Fresenius" and they can get Dialysis supplies to several countries, (when I get a full list I will upload it), unfortunately for me Bali and Vietnam are not countries they can get supplies to, Thailand and Phuket is so this is where we are going. The main thing is to give Home Dialysis plenty of notice when you are travelling, if travelling oversea's then check they can get supplies to your destination before you book, if they don't supply to the country you are going to then you will have to pay to get supplies to your destination yourself which can get expensive when you consider how many boxes of supplies you need. You need to give Home Dialysis 3 months notice if travelling Internationally, information you need to provide is the Country you are going to; Hotel Name. Address, Phone Number, Name of a Contact that can receive supplies (IE Manager), Dates of travel and return plus what you prescription of Dialysis bags per day is (IE 2 Green and 2 Yellow, 1 Green and 3 Yellow) Much the same information is required if travelling Domestically and you only need to give Home Dialysis 1 months notice, if you are staying with relatives you still need to to provide details of where you are staying , Home Dialysis deliver enough Dialysis Bags to your destination free of charge but remember to check with Home Dialysis before you book.
Home Dialysis only supply Bags to your destination soy you will need to take everything else with you including Caps, Cleaning Fluids, Paper Towels, the Organizer from IV pole, a clamp and hook, dressings and anchor tape for your Catheter plus a spare Dialysis Bag in case you get delayed.
When flying make sure you fly with no fluid in, "Fly Dry", otherwise it will get a little uncomfortable as the fluid will expand when you are in the air, it's ok to go without fluid for a day or so, People fly from Australia to England dry which is over 24 hour flight. When I come back from Thailand I will have a 9 hour stop over in Kuala Lumpur so I may do a bag if I can find a hygienic spot, if not I will stay dry rather than risk infection.
Also remember that travel insurance will be more expensive, normally for me it's around $80 for 2 weeks, after declaring I was on Peritoneal Dialysis the cost was around $550, you can get a quote from "Insure and Go" just remember to declare your Kidney Problems, you would be crazy not to because if something went wrong oversea's it would cost you a fortune.
Remember not to swim in Pools, it doesn't matter how expensive the resort is all pools have germs, if swimming in pools you risk Exit Site infection and "Peritonitis", I have met people that have had both from swimming in pools and the risk make's it not worth it, try and plan a holiday near the beach as swimming in the ocean is fine.
Hope this helps if you're planning a holiday, remember I am in Australia, most of the information in this section is applicable to everyone just check with your own Home Dialysis people about getting your supplies to your destination.
On a visit to my specialist 29/07/2017 he increased my Calcitriol from 2 a day to 3 a day, after about 6 weeks on the new dosage I started to get abdominal pain on my left side about where appendix would be if it was on left side, my draining was slowing down and I developed constipation which I controlled with laxatives, I was due to see specialist at the end of September (around 2 weeks from the start of my symptoms) I had my usual monthly blood tests 4 days before my appointment, 2 days after blood tests my Home Dialysis rang to say my Calcium levels were high, as I was seeing my specialist in 2 days we decided to wait for his opinion, I suggested it was because of the increase in Calcitriol, in the last week before my appointment the drain pain was unbearable and it was taking around 45 minutes to drain instead of the usual 15 - 20 minutes and on a couple of occasions I couldn't fully empty because of the pain and slow drain, on seeing my specialist he agreed that the Calcitriol had increased my calcium and reduced it to one pill a day for 3 days and then 2 a day from then on, he said the high Calcium could cause the constipation which in turn could slow my drain, the pain could have been caused by a shift in the catheter so he gave me a referral for Xray if things didn't improve in a couple of days, I didn't think that constipation was the cause of my drain problems as I was popping enough laxatives to move things along, after around 3 days of reduced Calcitriol the pain started to ease and draining was getting faster, after 7 days everything was back to normal with drain time around 15 minutes and the fluid out was back to average, for 2 days I got double my average of extra fluid and my weight dropped about 1.2kg so I reckon I was carrying around 1kg of extra fluid. I have no doubts that the Calcium spike caused all of my drain problems, at the time it was happening I didn't even think about the Calcitriol was causing my problems so if you are having similar symptoms then maybe discuss Calcium levels with your doctor. I'm not saying that it is the answer for your problems so don't stop taking medication without talking it over with your Specialist or GP, it for sure was the cause of my problem, if you do discuss this with your doctor please feel free to reference to my experience.
She told me that she had access to 5 - 6 live donors that volunteered on their own accord as basically they needed the money, they are told the will get $US25,000-00 for their kidney and also aftercare, the reality is they get $US2000- $US3000 and very little aftercare.
My fee to get a Kidney from the Phillipines would be $US85,000-00, the package includes, (this copied and pasted from the original email hence the broken English tone);
Why I chose Peritoneal Dialysis? My specialist basically chose for me after discussing it with me, you sure have more freedom as Dialysis happens whilst you go about your daily business, I can still work (but not lift heavy things), I enjoy kayaking and swimming which I can still do (for health reasons No Swimming in Public Pools) and we are even going on holiday oversea's, the other form of Dialysis is called "Hemodialysis" All know I know about Hemodialysis (HD) is that you don't have as much freedom, for me HD would mean me going to a hospital 50km's (30 Miles) away 3 times a week where treatment takes about 6 hours each time, Peritoneal Dialysis (PD) isn't for everyone and needs to be discussed with your specialist.
To be able to do PD you need to attend "Training" from when I had the tube inserted until the day I started training was exactly 1 month, training lasts 5 days with 4 days done at the Dialysis Clinic and the last day is done at home (For me home is 300km from the clinic so it was done at the place we stayed at). Training is from 9.00am to 2.30pm each day,try not to go alone, my wife came with me and it sure helps having someone to support you and also learn what goes on, if I feel a little low or tired my wife can help me set up, I think training would be difficult on your own so try and get someone to go with you like a partner, sibling or career or friend. After training you start doing 4 bags of fluid each day, for me I start bags at 5.30am. 12.00pm, 5.00pm and 9.00pm, I work from 7.00am - 3.30pm so these times work for me, as of today I have been on full time PD for 11 days and I feel 200% better, my skin colour is almost normal, my appetite is back an I can stay awake well past 7.30pm, I still feel fatigued and wear out easily if walking or doing chores, this mainly because I am very anemic, "Anemia" is basically a low amount of red blood cells (Click the link for full explanation), to fix this I will need to start regular injections of "Erythropoietin" (EPO), EPO increases red blood cells and was used by illegally by "Tour De France" Cyclist "Lance Armstrong"
EPO is a hormone you inject yourself with a small very fine needle into the fat on your stomach, I hope to start EPO within a week so will update how it all goes then.
Holiday's and Flying with Peritoneal Dialysis
Finding information about Flying whilst on Peritoneal Dialysis is hard, at the time of writing I am 1 day from travelling to Phuket Thailand so here is what I have learnt, most info here is applicable to Australians travelling so check with your own countries Home Dialysis provider as to how they do things.My Home Dialysis provider is "Fresenius" and they can get Dialysis supplies to several countries, (when I get a full list I will upload it), unfortunately for me Bali and Vietnam are not countries they can get supplies to, Thailand and Phuket is so this is where we are going. The main thing is to give Home Dialysis plenty of notice when you are travelling, if travelling oversea's then check they can get supplies to your destination before you book, if they don't supply to the country you are going to then you will have to pay to get supplies to your destination yourself which can get expensive when you consider how many boxes of supplies you need. You need to give Home Dialysis 3 months notice if travelling Internationally, information you need to provide is the Country you are going to; Hotel Name. Address, Phone Number, Name of a Contact that can receive supplies (IE Manager), Dates of travel and return plus what you prescription of Dialysis bags per day is (IE 2 Green and 2 Yellow, 1 Green and 3 Yellow) Much the same information is required if travelling Domestically and you only need to give Home Dialysis 1 months notice, if you are staying with relatives you still need to to provide details of where you are staying , Home Dialysis deliver enough Dialysis Bags to your destination free of charge but remember to check with Home Dialysis before you book.
Home Dialysis only supply Bags to your destination soy you will need to take everything else with you including Caps, Cleaning Fluids, Paper Towels, the Organizer from IV pole, a clamp and hook, dressings and anchor tape for your Catheter plus a spare Dialysis Bag in case you get delayed.
When flying make sure you fly with no fluid in, "Fly Dry", otherwise it will get a little uncomfortable as the fluid will expand when you are in the air, it's ok to go without fluid for a day or so, People fly from Australia to England dry which is over 24 hour flight. When I come back from Thailand I will have a 9 hour stop over in Kuala Lumpur so I may do a bag if I can find a hygienic spot, if not I will stay dry rather than risk infection.
Also remember that travel insurance will be more expensive, normally for me it's around $80 for 2 weeks, after declaring I was on Peritoneal Dialysis the cost was around $550, you can get a quote from "Insure and Go" just remember to declare your Kidney Problems, you would be crazy not to because if something went wrong oversea's it would cost you a fortune.
Remember not to swim in Pools, it doesn't matter how expensive the resort is all pools have germs, if swimming in pools you risk Exit Site infection and "Peritonitis", I have met people that have had both from swimming in pools and the risk make's it not worth it, try and plan a holiday near the beach as swimming in the ocean is fine.
Hope this helps if you're planning a holiday, remember I am in Australia, most of the information in this section is applicable to everyone just check with your own Home Dialysis people about getting your supplies to your destination.
Drain Pain and Slow Drain Fixed
I Was Offered A to Buy A Kidney from the Phillipines
Yes I posted in a Kidney forum (The forum has now changed settings so that every post is moderated) and a lady from the Phillipines offered me a kidney from a Live Donor, being inquisitive I decided to play along and see where it lead, also through this experience I met Dr Campbell Fraser From Griffith University Queensland, Campbell is himself is a Kidney Transplant Recipient around 15 years ago, Campbell lectures in Asian Studies and also has a main interest in the illegal Organ Trade and also trying to stop it, so with Campbell's guidance I kept in contact with this lady to see what information I could find.She told me that she had access to 5 - 6 live donors that volunteered on their own accord as basically they needed the money, they are told the will get $US25,000-00 for their kidney and also aftercare, the reality is they get $US2000- $US3000 and very little aftercare.
My fee to get a Kidney from the Phillipines would be $US85,000-00, the package includes, (this copied and pasted from the original email hence the broken English tone);
- Hospital Fees (including room and board; meals )
- Operation Fees (operating room fees)
- All medical laboratory tests that needs to be done
- Doctor's Fee
- Hospital Fee
- Medications pre, on and post transplant (inclusive of everything)
- Payment to the Kidney Donor
- Hospital Fees, Operation Fees and Doctor's Fee for the donor on the extraction of kidney
- Medications of the donor
- A personal assistant will be assigned to you, and will be with you from day 1 up until the date of your return back home. This assistant will function as an aide for you, will stay with you, and will be able to run errands for you. (If I will be able to close this deal for you, I might be the one most likely to be assigned to you.)
- This package also includes your accommodation (Hotel Stay) after the operation and while you are recuperating. This includes everything as well including meals and car rental is being provided for your convenience especially during follow up check ups and if you wish to go around some place as well. Car rental is allocated for the entire duration of your stay here.
- Tickets going home from here will also be included in the package. This is because we have to make sure all is well with you, and you had recovered from the surgery before we can allow you to travel back home.
All I had to do was provide my Blood Group and Medical Records and they would start the ball rolling, she guaranteed an experienced surgeon and first class hospital, she also said the success rate was 85% - 95% which is much the same as Australia, the reality is the success rate is 20% - 30% and when something does go wrong then the doctors here in Australia (or what ever country you come from) to pick up the pieces, I have spoken to doctors that have picked up the pieces and it generally means losing the kidney and back on Dialysis so you end up where you started minus $US80-000.
If you are offered an organ from oversea's don't even consider it, from experience things can go wrong and you need an experienced team to get things back on track and get your medication levels right.
The wait time for organs is getting shorter all the time (in Australia at least), we need to put a stop to the illegal organ trade and the best way to do this is to get more donors registered, I always thought I was an organ donor as I ticked the box on my Drivers License renewal, this is no longer accepted and as renew my licence every 5 years I was unaware of this. You need to go to the Australian Organ Donor Register, CLICK HERE for information and requirements and then click the link at the bottom of the page to access the registration form or CLICK HERE to access the form, you will need your medicare number and less than 3 minutes of time to register.
Sadly to be a donor means that you or your family will suffer a sad loss but a part of your loss will live on with someone else, take it from me your choice to be a donor will be greatly appreciated by several people and give them a new lease on life and to be a donor is really a heroic thing to do.
On Going Diary
I will update regularly on how things progress and any other news relating to CKD.
27/04/2017:
As of today I have been on Peritoneal Dialysis for 2 weeks and as mentioned I feel 200% better but still a little way to go before my body is fully clean of toxins, today I also saw my Kidney Specialist and he said things were going well. he has increased my Blood Pressure medication and also prescribed "Erythropoietin" (EPO), my local chemist doesn't keep EPO and it is a special prescription so I have to wait a week before I can start, I have 2 injections in the first month and then 1 injection every 4 weeks, will update how I go with the EPO once I start, my specialist also said he would like to see me on dialysis a couple of more months before I get put on the transplant list as my body still needs time to clean out. whilst I would have liked to go on the list sooner it was still fantastic news, we have a holiday booked to Phuket Thailand in July so will go on the list after then.
We originally had a holiday to Vietnam booked before I was diagnosed and had to cancel as Home Dialysis can't get supplies to Vietnam, as they can get supplies to Thailand we were able to switch our accommodation to Phuket without penalty but changing plane tickets is proving more difficult even with 70 days notice, looks like we may lose the airfare, I have contacted the airline direct and will update when I hear back and then give the appropriate feedback to all involved.
03/05/2017:
Today is one day since having my first EPO injection and seriously I feel the difference, almost 24 hours after my injection I could chop enough wood for the night without having to stop and catch my breath, I was a little breathless when finished but not too bad.
06/05/2017
Had lunch at the beach today which is the first time since I was diagnosed 11 weeks ago, it may not sound that significant but I was able to walk in the sand, stand in the ocean in a strong current and walk up and down 2 flights of steps, we stayed for around an hour and man I was puffed when I got back to the car but I was able to do it so it means the EPO is starting to kick in a little more, 7 days ago I wouldn't have lasted 5 minutes and I doubt I would have been able to get up the stairs back to our car
15/05/2017
Second needle of EPO today so see how it goes, excellent so far and able to most things now, still feel a little fatigued after exerting but nowhere as bad as 2 weeks ago, yesterday I was able to take a load of garden rubbish to the tip and today chopped wood for the week, 2 weeks ago I would have to have a break after 1 lump of wood!
At the end of next week I have an appointment with my Kidney Specialist so will have blood tests early next week, should see how red blood count is going , must say I feel a million dollars and can get through a day at work without nearly falling asleep.
29/05/2017
Visited my Kidney Specialist 2 days ago and all is going well, my next appointment with him is after we get back from Phuket in July, this appointment he will arrange for me to meet the Transplant Team and prepare me for the transplant list.
05/06/2017
Got a Letter from Hospital saying an appointment had been made for to meet the transplant team and have some tests, I thought this a little strange as already mentioned above My specialist said this would happen in July, emailed specialist and he said he would cancel this appointment and he didn't know why it was made as it is indeed a month early, I more relieved than anything else as I would rather do after Phuket holiday.
Speaking of the holiday it's all paid for and we fly out on 2nd July, we booked flights through Expedia and travel insurance through Insure and Go both have banners on this page so click the links and check them out, if you use them I get paid a little commission, travel insurance cost a little more as I declared my condition before buying, you can do online and get a quote, I have used both companies many times even before my Kidney Problem.
After 6 weeks of trying to contact Malaysia Airlines about canceling our Vietnam Flight and putting it towards a Phuket they said because I bought my tickets through an agent the Agent made the rules so contact them, Malaysia Airlines are not authorized to cancel Agent booked Flights, I contacted WEBJET the agent about 8 weeks ago and they said they cant issue refunds as Malaysia Airlines make the rules, I sent WEBJET the answer I got from Malaysia Airlines and WEBJET said it was out of there control, so this is the never ending story, I gave up, the first time I didn't use Expedia and the last, I will never use WEBJET or Malaysia Airlines again and not mainly because they didn't give me refund but mainly because WEBJET didn't even offer to help in anyway and Malaysia Airlines took over 6 weeks to answer my query, I sent emails to 4 different addresses and spent hours on hold on the telephone without talking to anyone, seems both companies take your money fast enough but when a problem arises no knows how to deal with it
12/06/2017
30 days on new Blood Pressure Tablets and my Blood pressure has been around 120/80 for a couple of weeks, it was on average around 155/95 so great improvement here, Have my 3rd EPO shot due this week, I will delay until weekend so I have plenty to last until I get back from Phuket, not much else happening and all going along ok, I don't really want a lot to happen until Phuket has been and gone then the meetings with the transplant team commence, will be good to get on the list and find out what the wait time will be approximately, stay tuned
18/06/2017
My appointment is made to meet the transplant team, this will be August 1 and then I will officially be on the transplant list, I haven't set my hopes too high and expect to wait a while before a transplant is available but being on the list is fantastic, I have discussed the options with my family and I don't want them to offer me a kidney, I would feel terrible if a live donor gave me a kidney and it failed.
The Australian Government has made it a little harder to become a donor, in the past you use to tick a box when you renewed your drivers license if you wanted to be a donor which I did a few years ago and didn't know they change the system, now you have to fill out a form at the Australian Organ Donor Register so if you want to be a donor then please take the time to fill out the form, I will guarantee that it will be appreciated by many people.
01/07/2017
Had an appointment at Home Dialysis clinic 2 days ago. the test is to see how well my Peritoneal is coping and how well the Dialysis is going and see if I am compatible for an "Automated Peritoneal Dialysis Machine" or Cycler, in short the machine changes the fluid for you whilst you sleep and no need to do bag exchanges every 6 hours so sure would make life easier.
Tomorrow we fly to Phuket, at the moment it's 12 Celsius where I am, in Phuket it's 30c so can't wait, will update when we get back
19/07/2017
Well holiday over and back to work tomorrow, my dialysis bags were waiting for me at hotel in Phuket so thanks to the Home Dialysis people, I will say had a good holiday but much prefer Bali, you can't really compare the 2 places as they are totally different but comparing a little, Phuket is cleaner and less traffic, hawkers a way less annoying, Bali is Cheaper by a long way, Taxi's would be 4 times cheaper and food and beer around 3 times cheaper, day trips and tours are double the price in Phuket as is entry to most attractions, Bali is 3 hours 40 min flight, it took 11 hours to get to Phuket and 17 hours to get back and flights cost twice as much to Phuket.
I took a spare dialysis bag with me plus other medical stuff and pills and had no problems going through Perth, Singapore or Kuala Lumpur airports, all of these airports scanned my bag and asked what was inside so I showed them my stomach tube and said "Medical Supplies"and all was fine leaving Phuket they scanned my bag and asked so did the same and they opened my bag and emptied everything out and picked out some round nose scissors which they held in the air yelling loudly for a supervisor, when the supervisor arrived I showed my tube and explained I needed them to cut dressings and tape, she said "Too bad, no can take" she then put on a wry grin and walked over to a bin, she called out to me and smiled and dropped them in, it was all a little embarrassing, I can sort of understand them taking the scissors but no need for the big performance, I also had a metal pen which I got to keep, I'm sure I could do far more damage stabbing someone with my pen than I could with my blunt nose scissors, anyhow we wont be hurrying back to Phuket so no harm done.
2 important dates for my journey, I see my Kidney specialist on 29th July and 1st August I meet the Transplant Specialist, a little nervous about this one and will update after it's over.
29/07/2017
Appointment with Renal Specialist today and he took me off Blood Pressure pills so will see how that goes also put me on Calcium Supplement, everything going along fine.
31/07/2017
Today I appeared on National TV on Channel 10's "The Project" The story was for Donor Awareness Week and the story was about Black Market Organ Trade, I was offered a Kidney to buy from the Philippines, "Click Here To View The 5 Minute Story".
01/08/2017
Had appointment with Transplant Team today and all went pretty well, I am mentally and physically fit enough to have a transplant, I have to have a couple of cancer test including skin and attend a seminar in 3 weeks then I should have all the boxes ticked, hopefully I will make the list in around a month, I will update after seminar on 23/08/217.
25/08/2017
Another step closer to the end of my trip, I went to a seminar about kidney transplants, it is compulsory to attend if you want to make the transplant list, the seminar was very informative and had speakers that included, Transplant Surgeons, Pharmacist, plus donors and recipients, I did learn that the waiting list is not that long and also Fiona Stanley Hospital averages 1 transplant per week, My Blood Group is A+ and is better if waiting for a transplant as less A's are waiting and A's can also receive an O group kidney if antibodies are low, I am also antibody negative so another thing in my favor
I am having another round of blood tests next week which is the final hurdle, I already have an appointment on the 12th of September to sign the papers, I am hoping for an early Christmas Present and having a transplant before Christmas, my hopes may be a little high but everything is in my favor, I will update again after the 12/09/2017.
11/09/2017
Off to Perth tomorrow to sign Papers so I should be on the transplant list finally, one thing I didn't mention at the beginning of this month was that when I was diagnosed in February I was told if I didn't go to doctor about my condition I would have been dead by August, so every day I wake up is now a welcome bonus and I hope there is many more days to come.
Will update once I know the story after signing papers, if I don't then my transplant may have come and I will update when I can.
12/09/2017
Well one journey almost over and another about to start.
Today was told i would be on transplant list beginning of October and should have a kidney by Christmas.
They also said because all else is perfect they may reject a couple until they find me an ideal match, the wait list is small and my blood type means I can receive from other blood types. I'm obviously excited but also a little nervous, will post again when I have more news.
2/10/2017
Went to see my Renal Specialist on 30/09/2017 and all good, we discussed the upcoming transplant and he is confident I should have a transplant before November, he also suggested that they will probably reject a couple of kidneys on my behalf as they have more donors than recipients and they want a good kidney with best match as possible, I sure want to get the best kidney available but I really would like it over before Christmas.
Only 1 week before I go on transplant list and I feel both excited and nervous, I hope it isn't drawn out as everyone to do with transplant happening are confident it won;t be a long wait, fingers crossed.
16/10/2017
I was put on the Transplant List on the 10/10/2017 and today I received the official letter from the hospital plus instructions of what to do when I get the call plus what to bring, I guess it's all for real now, hopefully good times ahead
27/04/2017:
As of today I have been on Peritoneal Dialysis for 2 weeks and as mentioned I feel 200% better but still a little way to go before my body is fully clean of toxins, today I also saw my Kidney Specialist and he said things were going well. he has increased my Blood Pressure medication and also prescribed "Erythropoietin" (EPO), my local chemist doesn't keep EPO and it is a special prescription so I have to wait a week before I can start, I have 2 injections in the first month and then 1 injection every 4 weeks, will update how I go with the EPO once I start, my specialist also said he would like to see me on dialysis a couple of more months before I get put on the transplant list as my body still needs time to clean out. whilst I would have liked to go on the list sooner it was still fantastic news, we have a holiday booked to Phuket Thailand in July so will go on the list after then.
We originally had a holiday to Vietnam booked before I was diagnosed and had to cancel as Home Dialysis can't get supplies to Vietnam, as they can get supplies to Thailand we were able to switch our accommodation to Phuket without penalty but changing plane tickets is proving more difficult even with 70 days notice, looks like we may lose the airfare, I have contacted the airline direct and will update when I hear back and then give the appropriate feedback to all involved.
03/05/2017:
Today is one day since having my first EPO injection and seriously I feel the difference, almost 24 hours after my injection I could chop enough wood for the night without having to stop and catch my breath, I was a little breathless when finished but not too bad.
06/05/2017
Had lunch at the beach today which is the first time since I was diagnosed 11 weeks ago, it may not sound that significant but I was able to walk in the sand, stand in the ocean in a strong current and walk up and down 2 flights of steps, we stayed for around an hour and man I was puffed when I got back to the car but I was able to do it so it means the EPO is starting to kick in a little more, 7 days ago I wouldn't have lasted 5 minutes and I doubt I would have been able to get up the stairs back to our car
15/05/2017
Second needle of EPO today so see how it goes, excellent so far and able to most things now, still feel a little fatigued after exerting but nowhere as bad as 2 weeks ago, yesterday I was able to take a load of garden rubbish to the tip and today chopped wood for the week, 2 weeks ago I would have to have a break after 1 lump of wood!
At the end of next week I have an appointment with my Kidney Specialist so will have blood tests early next week, should see how red blood count is going , must say I feel a million dollars and can get through a day at work without nearly falling asleep.
29/05/2017
Visited my Kidney Specialist 2 days ago and all is going well, my next appointment with him is after we get back from Phuket in July, this appointment he will arrange for me to meet the Transplant Team and prepare me for the transplant list.
05/06/2017
Got a Letter from Hospital saying an appointment had been made for to meet the transplant team and have some tests, I thought this a little strange as already mentioned above My specialist said this would happen in July, emailed specialist and he said he would cancel this appointment and he didn't know why it was made as it is indeed a month early, I more relieved than anything else as I would rather do after Phuket holiday.
Speaking of the holiday it's all paid for and we fly out on 2nd July, we booked flights through Expedia and travel insurance through Insure and Go both have banners on this page so click the links and check them out, if you use them I get paid a little commission, travel insurance cost a little more as I declared my condition before buying, you can do online and get a quote, I have used both companies many times even before my Kidney Problem.
After 6 weeks of trying to contact Malaysia Airlines about canceling our Vietnam Flight and putting it towards a Phuket they said because I bought my tickets through an agent the Agent made the rules so contact them, Malaysia Airlines are not authorized to cancel Agent booked Flights, I contacted WEBJET the agent about 8 weeks ago and they said they cant issue refunds as Malaysia Airlines make the rules, I sent WEBJET the answer I got from Malaysia Airlines and WEBJET said it was out of there control, so this is the never ending story, I gave up, the first time I didn't use Expedia and the last, I will never use WEBJET or Malaysia Airlines again and not mainly because they didn't give me refund but mainly because WEBJET didn't even offer to help in anyway and Malaysia Airlines took over 6 weeks to answer my query, I sent emails to 4 different addresses and spent hours on hold on the telephone without talking to anyone, seems both companies take your money fast enough but when a problem arises no knows how to deal with it
12/06/2017
30 days on new Blood Pressure Tablets and my Blood pressure has been around 120/80 for a couple of weeks, it was on average around 155/95 so great improvement here, Have my 3rd EPO shot due this week, I will delay until weekend so I have plenty to last until I get back from Phuket, not much else happening and all going along ok, I don't really want a lot to happen until Phuket has been and gone then the meetings with the transplant team commence, will be good to get on the list and find out what the wait time will be approximately, stay tuned
18/06/2017
My appointment is made to meet the transplant team, this will be August 1 and then I will officially be on the transplant list, I haven't set my hopes too high and expect to wait a while before a transplant is available but being on the list is fantastic, I have discussed the options with my family and I don't want them to offer me a kidney, I would feel terrible if a live donor gave me a kidney and it failed.
The Australian Government has made it a little harder to become a donor, in the past you use to tick a box when you renewed your drivers license if you wanted to be a donor which I did a few years ago and didn't know they change the system, now you have to fill out a form at the Australian Organ Donor Register so if you want to be a donor then please take the time to fill out the form, I will guarantee that it will be appreciated by many people.
01/07/2017
Had an appointment at Home Dialysis clinic 2 days ago. the test is to see how well my Peritoneal is coping and how well the Dialysis is going and see if I am compatible for an "Automated Peritoneal Dialysis Machine" or Cycler, in short the machine changes the fluid for you whilst you sleep and no need to do bag exchanges every 6 hours so sure would make life easier.
Tomorrow we fly to Phuket, at the moment it's 12 Celsius where I am, in Phuket it's 30c so can't wait, will update when we get back
19/07/2017
Well holiday over and back to work tomorrow, my dialysis bags were waiting for me at hotel in Phuket so thanks to the Home Dialysis people, I will say had a good holiday but much prefer Bali, you can't really compare the 2 places as they are totally different but comparing a little, Phuket is cleaner and less traffic, hawkers a way less annoying, Bali is Cheaper by a long way, Taxi's would be 4 times cheaper and food and beer around 3 times cheaper, day trips and tours are double the price in Phuket as is entry to most attractions, Bali is 3 hours 40 min flight, it took 11 hours to get to Phuket and 17 hours to get back and flights cost twice as much to Phuket.
I took a spare dialysis bag with me plus other medical stuff and pills and had no problems going through Perth, Singapore or Kuala Lumpur airports, all of these airports scanned my bag and asked what was inside so I showed them my stomach tube and said "Medical Supplies"and all was fine leaving Phuket they scanned my bag and asked so did the same and they opened my bag and emptied everything out and picked out some round nose scissors which they held in the air yelling loudly for a supervisor, when the supervisor arrived I showed my tube and explained I needed them to cut dressings and tape, she said "Too bad, no can take" she then put on a wry grin and walked over to a bin, she called out to me and smiled and dropped them in, it was all a little embarrassing, I can sort of understand them taking the scissors but no need for the big performance, I also had a metal pen which I got to keep, I'm sure I could do far more damage stabbing someone with my pen than I could with my blunt nose scissors, anyhow we wont be hurrying back to Phuket so no harm done.
2 important dates for my journey, I see my Kidney specialist on 29th July and 1st August I meet the Transplant Specialist, a little nervous about this one and will update after it's over.
29/07/2017
Appointment with Renal Specialist today and he took me off Blood Pressure pills so will see how that goes also put me on Calcium Supplement, everything going along fine.
31/07/2017
Today I appeared on National TV on Channel 10's "The Project" The story was for Donor Awareness Week and the story was about Black Market Organ Trade, I was offered a Kidney to buy from the Philippines, "Click Here To View The 5 Minute Story".
01/08/2017
Had appointment with Transplant Team today and all went pretty well, I am mentally and physically fit enough to have a transplant, I have to have a couple of cancer test including skin and attend a seminar in 3 weeks then I should have all the boxes ticked, hopefully I will make the list in around a month, I will update after seminar on 23/08/217.
25/08/2017
Another step closer to the end of my trip, I went to a seminar about kidney transplants, it is compulsory to attend if you want to make the transplant list, the seminar was very informative and had speakers that included, Transplant Surgeons, Pharmacist, plus donors and recipients, I did learn that the waiting list is not that long and also Fiona Stanley Hospital averages 1 transplant per week, My Blood Group is A+ and is better if waiting for a transplant as less A's are waiting and A's can also receive an O group kidney if antibodies are low, I am also antibody negative so another thing in my favor
I am having another round of blood tests next week which is the final hurdle, I already have an appointment on the 12th of September to sign the papers, I am hoping for an early Christmas Present and having a transplant before Christmas, my hopes may be a little high but everything is in my favor, I will update again after the 12/09/2017.
11/09/2017
Off to Perth tomorrow to sign Papers so I should be on the transplant list finally, one thing I didn't mention at the beginning of this month was that when I was diagnosed in February I was told if I didn't go to doctor about my condition I would have been dead by August, so every day I wake up is now a welcome bonus and I hope there is many more days to come.
Will update once I know the story after signing papers, if I don't then my transplant may have come and I will update when I can.
12/09/2017
Well one journey almost over and another about to start.
Today was told i would be on transplant list beginning of October and should have a kidney by Christmas.
They also said because all else is perfect they may reject a couple until they find me an ideal match, the wait list is small and my blood type means I can receive from other blood types. I'm obviously excited but also a little nervous, will post again when I have more news.
2/10/2017
Went to see my Renal Specialist on 30/09/2017 and all good, we discussed the upcoming transplant and he is confident I should have a transplant before November, he also suggested that they will probably reject a couple of kidneys on my behalf as they have more donors than recipients and they want a good kidney with best match as possible, I sure want to get the best kidney available but I really would like it over before Christmas.
Only 1 week before I go on transplant list and I feel both excited and nervous, I hope it isn't drawn out as everyone to do with transplant happening are confident it won;t be a long wait, fingers crossed.
16/10/2017
I was put on the Transplant List on the 10/10/2017 and today I received the official letter from the hospital plus instructions of what to do when I get the call plus what to bring, I guess it's all for real now, hopefully good times ahead
The Journey Ends 20/10/2017
On the 19/10/2017 just 9 days after going on the transplant list I got the call from the hospital saying they had a kidney to offer me, I was a little startled and then asked a few questions, I accepted the kidney and hung up, I was very emotional after the call and once I got myself back together my wife and I packed a few things and head off on the 3 hour journey to hospital, we arrived at the hospital at 8.00pm and got settled, a couple of doctors came in and explained what was going to happen and also said the operation was set for 8.00am 20/10/2017. I had an uneasy sleep and 6.30am the porter came to wheel me to theater, once there I signed consent forms and talked with surgeons and nurses, I was put to sleep around 7.45am and woke up in my room around 2.00pm with a pile of hoses hanging out of my body and a new pain in my side.
27/10/2017
1 week after the operation and starting to feel a little better, I was discharged from hospital 2 days ago and we are living in a unit near the hospital as we have to go to the hospital every day, I feel very tired as I my hemoglobin is low and I have to drink lots of water so need to pee every 45 minutes day and night so still very little sleep.
5/11/2017
Just over 2 weeks after the operation and feeling much better, finally had some sleep and pain is easing when I cough or sneeze, the pills i'm taking have been upsetting my stomach and I have had diarrhoea for a few days, doctors have changed my meds around and things seem to be improving, I feel real good and doctors say things progressing as they should.
19/11/2017
Transplant was 4 weeks ago and feeling better than I have for a couple of years, after week 3 my problems above disappeared and I started eating, I have put on 3 kilograms (6.6 pounds) in around a week, I have been walking around 6000 steps a day where as 1.5 weeks ago I couldn't walk 300 steps without having to stop for a rest, at the moment "LIFES GOOD"
6/12/2017
My creatinine level has evened out at 200 so one of the doctors arranged for me to have a "Renal Biopsy" which happened today, the procedure only takes about 30 minutes but then you have to lay flat for 4 hours to make sure there's no major bleeding, very long boring day.
13/12/2017
Got the biopsy results today and all is excellent, the doctors have decided 200 will be my creatinine level, they think because I have a female kidney it's a bit smaller and this why.
This Friday will mark 8 weeks since transplant and I feel fantastic, this is the best I have felt in 2 years, you don't realise how sick you are until you are better, I went back to work this Monday on light duties but it is still good to be back, I was off work 7 weeks and the doctors weren't convinced I should go back until after Christmas but I am totally bored at home plus we still need to pay the bills, I have been unpaid for the 7 weeks and Christmas coming it's good to get an income again.
7/02/2018
Has been a couple of months since last update as been not much to report, a month a go I stopped having to travel to Perth and did my appointments via Teleconference at the local hospital and also did my weekly blood tests at the local hospital also. I had my last teleconference last week and now only have to see the same specialist I saw when on Dialysis at a hospital only 50km away once a month and blood tests only once a month also, I won't miss the needles....
The new kidney is functioning well with blood pressure normal between 120-130, haemoglobin around 130 and creatinine 190 which is a little up and doctors think this is because I have a female kidney which is smaller.
We went kayaking for the weekend a couple of weeks ago and body lasted well, I also have a Fitbit and manage around 8,000 steps a day mainly at work and 2km walks on weekends, pills are getting less and I feel better than I felt for a few years. Will update again in a month or so......
04/04/18 and off to Bali in 9 days.
19/11/2017
Transplant was 4 weeks ago and feeling better than I have for a couple of years, after week 3 my problems above disappeared and I started eating, I have put on 3 kilograms (6.6 pounds) in around a week, I have been walking around 6000 steps a day where as 1.5 weeks ago I couldn't walk 300 steps without having to stop for a rest, at the moment "LIFES GOOD"
6/12/2017
My creatinine level has evened out at 200 so one of the doctors arranged for me to have a "Renal Biopsy" which happened today, the procedure only takes about 30 minutes but then you have to lay flat for 4 hours to make sure there's no major bleeding, very long boring day.
13/12/2017
Got the biopsy results today and all is excellent, the doctors have decided 200 will be my creatinine level, they think because I have a female kidney it's a bit smaller and this why.
This Friday will mark 8 weeks since transplant and I feel fantastic, this is the best I have felt in 2 years, you don't realise how sick you are until you are better, I went back to work this Monday on light duties but it is still good to be back, I was off work 7 weeks and the doctors weren't convinced I should go back until after Christmas but I am totally bored at home plus we still need to pay the bills, I have been unpaid for the 7 weeks and Christmas coming it's good to get an income again.
7/02/2018
Has been a couple of months since last update as been not much to report, a month a go I stopped having to travel to Perth and did my appointments via Teleconference at the local hospital and also did my weekly blood tests at the local hospital also. I had my last teleconference last week and now only have to see the same specialist I saw when on Dialysis at a hospital only 50km away once a month and blood tests only once a month also, I won't miss the needles....
The new kidney is functioning well with blood pressure normal between 120-130, haemoglobin around 130 and creatinine 190 which is a little up and doctors think this is because I have a female kidney which is smaller.
We went kayaking for the weekend a couple of weeks ago and body lasted well, I also have a Fitbit and manage around 8,000 steps a day mainly at work and 2km walks on weekends, pills are getting less and I feel better than I felt for a few years. Will update again in a month or so......
04/04/18 and off to Bali in 9 days.
Been a while since last update but not much to report until now, just over 5 months since transplant and I have super low "White Blood Cells (WBC)" the main problem here is that even if I get a common cold I will be hospitalised, my specialist has changed my medication around and second test WBC count was increasing but still way too low so have another test tomorrow and hopefully things on the improve, we are on a 15 day Bali Trip in 9 days so things hopefully will improve by then.
We haven't been to Bali for about 15 months and before Kidney problems we use to go twice a year so we are really looking forward to this trip, we booked through "Expedia" as always and we got travel insurance through "Insure and Go" (Remember booking holidays or insurance through my links hives me a little commission). "Insure and Go" are the only company (in Australia at least) that cover you for Medical Conditions at a fair rate, I got a quote online and added my transplant as a medical condition and it cost an extra $30 so well worth it, I will add that it cost a fair bit more when we went to Thailand when I was on Peritoneal Dialysis. I will update again after we get back from Bali, my new Kidney will be in 6 months by then.
May the 4th be with you
Back from a wonderful 15 days in Bali and survived, ate some wonderful food and did a lot of walking and swimming, some worry about flying whilst on anti rejection pills but I had no problems, I thought about wearing a mask but went without and no problems at all, whilst in Bali I celebrated 6 months with my new Kidney on April 20th, Life's good 😀
04/07/2018
Not much to report in the last couple of months, I have changed medication around a bit and a couple of pills have been dropped off and I now take 7 pills in the morning and 5 in the evening, after transplant I was on around 28 pills a day so a welcome drop, I had an appointment with specialist on Saturday and all seems ok with Creatinine at 177 and Haemoglobin at 149, I had a small bit of blood in my urine sample so having an ultrasound today to check things out but not too stressed about it.
Well couldn't have been more wrong about the blood in urine last update as it turned out to be Bladder Cancer. I had a CT Scan at on 2nd of August which confirmed the cancer hadn't spread, I also had a Biopsy on my Kidney on 3rd of August which confirmed my Kidney was also OK, I then had a small Operation to remove the cancer in my bladder which was also successful. After the op I got a Urinary Tract Infection (UTI) which was super painful, I was antibiotics for 3 weeks which caused other problems including Diarrhoea which led to me losing 5 more kilo's (11pounds) so I was also taking to much anti rejection medication for my weight, this caused my Creatinine to go up to 230 and also i lost fitness . which got me thinking I was losing my Kidney so with the stress of that and the other complications I was a physical and mental mess for a couple of weeks. I saw my Kidney specialist on the 25th August and he reduced my medication and gave me some more pills to fix the damage the antibiotics have done and by the 29th August my Creatinine was down to 190 and I feel heaps better but still not 100%.
I certainly don't want another month like the last, I now have to have another bladder check in November and if clear every 12 months after that.
Next month is my new Kidney's 1st Birthday on the 20th October so looking forward to that and will update again shortly after.
10/01/2019 New year with new problems, sorry didn't update after kidney's birthday as I have a lot happening. The Kidney's birthday went fine, I had a few friends over and I even had a couple of beers plus my wife made and excellent Kidney shaped (fortunately not Kidney flavoured) cake complete with pills and samples, whilst this was happening I was also having more work done on the Bladder Cancer and now have found it's a little more serious being High End Superficial which basically means it hasn't penetrated my bladder wall but is a threat to, if this happens it may lead to bladder removal and also my native kidney's. Because of being on anti rejection drugs and a suppressed immune system I can gave only 1 kind of treatment which is a type of chemotherapy called Mitomycin which involves having 50ml of fluid put into bladder via Catheter which I need to hold in for an hour and then urinate out, as the fluid is a little radioactive there is safety need in urinating into the toilet and flushing away and I will need this treatment once a week for 6 weeks followed by once a month for 10 months. The chance of success in normal patients is around 70% in the first year but the head Urologist in Western Australia has only ever seen 1 other Kidney Transplant patient with Bladder Cancer so not enough data available to say how it will go with main problem being my immune system isn't helping fight the cancer. We will stay positive for now and update in 6 weeks or so when we have a proper progress check up.
7/02/19 Well a few set backs as can't shake a Urinary Tract Infection since last update but seems good now so looks like I start treatment on 15/02/19, I have moved closer to home as they can now give me treatment at Bunbury Hospital which is only 100km's away, will update when treatment starts.
24/03/2019 Had my 4th lot of treatment this week so 2 to go, it has been 6 weeks since I started but I missed 2 weeks due to UTI, I now have a Cystoscopy on 1st May 2019 so will see if treatment has worked or is working, fingers crossed til then
27/06/2019 A fair bit happened since my last update, I finished treatment and had another Cystoscopy that found some more spots that needed to be removed, I had the operation to do this an have discussed my options with my Urologist, as mentioned before, because of my immune system being suppressed I really have no treatment options and the cancers keep coming back so the threat of one getting through my bladder wall and spreading increases after each removal operation so I have decided to have Bladder Removed and they will probably want to remove my rear kidneys also, this will be a major operation and around 3 months recovery time.
This has been a huge decision to make as will likely mean early retirement at 58 which is a blow as we still have bills to pay but I guess there is no other option as we need to protect the transplant kidney, If I lost this because of the cancer I would be unlikely to get another so it would be tough to go on, we are still positive and will find out more at the end of August so stay tuned
More content to be added. please come back............ last edited 27/06/2019We haven't been to Bali for about 15 months and before Kidney problems we use to go twice a year so we are really looking forward to this trip, we booked through "Expedia" as always and we got travel insurance through "Insure and Go" (Remember booking holidays or insurance through my links hives me a little commission). "Insure and Go" are the only company (in Australia at least) that cover you for Medical Conditions at a fair rate, I got a quote online and added my transplant as a medical condition and it cost an extra $30 so well worth it, I will add that it cost a fair bit more when we went to Thailand when I was on Peritoneal Dialysis. I will update again after we get back from Bali, my new Kidney will be in 6 months by then.
May the 4th be with you
Back from a wonderful 15 days in Bali and survived, ate some wonderful food and did a lot of walking and swimming, some worry about flying whilst on anti rejection pills but I had no problems, I thought about wearing a mask but went without and no problems at all, whilst in Bali I celebrated 6 months with my new Kidney on April 20th, Life's good 😀
04/07/2018
Not much to report in the last couple of months, I have changed medication around a bit and a couple of pills have been dropped off and I now take 7 pills in the morning and 5 in the evening, after transplant I was on around 28 pills a day so a welcome drop, I had an appointment with specialist on Saturday and all seems ok with Creatinine at 177 and Haemoglobin at 149, I had a small bit of blood in my urine sample so having an ultrasound today to check things out but not too stressed about it.
The New Journey Begins
2/09/2018Well couldn't have been more wrong about the blood in urine last update as it turned out to be Bladder Cancer. I had a CT Scan at on 2nd of August which confirmed the cancer hadn't spread, I also had a Biopsy on my Kidney on 3rd of August which confirmed my Kidney was also OK, I then had a small Operation to remove the cancer in my bladder which was also successful. After the op I got a Urinary Tract Infection (UTI) which was super painful, I was antibiotics for 3 weeks which caused other problems including Diarrhoea which led to me losing 5 more kilo's (11pounds) so I was also taking to much anti rejection medication for my weight, this caused my Creatinine to go up to 230 and also i lost fitness . which got me thinking I was losing my Kidney so with the stress of that and the other complications I was a physical and mental mess for a couple of weeks. I saw my Kidney specialist on the 25th August and he reduced my medication and gave me some more pills to fix the damage the antibiotics have done and by the 29th August my Creatinine was down to 190 and I feel heaps better but still not 100%.
I certainly don't want another month like the last, I now have to have another bladder check in November and if clear every 12 months after that.
Next month is my new Kidney's 1st Birthday on the 20th October so looking forward to that and will update again shortly after.
10/01/2019 New year with new problems, sorry didn't update after kidney's birthday as I have a lot happening. The Kidney's birthday went fine, I had a few friends over and I even had a couple of beers plus my wife made and excellent Kidney shaped (fortunately not Kidney flavoured) cake complete with pills and samples, whilst this was happening I was also having more work done on the Bladder Cancer and now have found it's a little more serious being High End Superficial which basically means it hasn't penetrated my bladder wall but is a threat to, if this happens it may lead to bladder removal and also my native kidney's. Because of being on anti rejection drugs and a suppressed immune system I can gave only 1 kind of treatment which is a type of chemotherapy called Mitomycin which involves having 50ml of fluid put into bladder via Catheter which I need to hold in for an hour and then urinate out, as the fluid is a little radioactive there is safety need in urinating into the toilet and flushing away and I will need this treatment once a week for 6 weeks followed by once a month for 10 months. The chance of success in normal patients is around 70% in the first year but the head Urologist in Western Australia has only ever seen 1 other Kidney Transplant patient with Bladder Cancer so not enough data available to say how it will go with main problem being my immune system isn't helping fight the cancer. We will stay positive for now and update in 6 weeks or so when we have a proper progress check up.
7/02/19 Well a few set backs as can't shake a Urinary Tract Infection since last update but seems good now so looks like I start treatment on 15/02/19, I have moved closer to home as they can now give me treatment at Bunbury Hospital which is only 100km's away, will update when treatment starts.
24/03/2019 Had my 4th lot of treatment this week so 2 to go, it has been 6 weeks since I started but I missed 2 weeks due to UTI, I now have a Cystoscopy on 1st May 2019 so will see if treatment has worked or is working, fingers crossed til then
27/06/2019 A fair bit happened since my last update, I finished treatment and had another Cystoscopy that found some more spots that needed to be removed, I had the operation to do this an have discussed my options with my Urologist, as mentioned before, because of my immune system being suppressed I really have no treatment options and the cancers keep coming back so the threat of one getting through my bladder wall and spreading increases after each removal operation so I have decided to have Bladder Removed and they will probably want to remove my rear kidneys also, this will be a major operation and around 3 months recovery time.
This has been a huge decision to make as will likely mean early retirement at 58 which is a blow as we still have bills to pay but I guess there is no other option as we need to protect the transplant kidney, If I lost this because of the cancer I would be unlikely to get another so it would be tough to go on, we are still positive and will find out more at the end of August so stay tuned
To Thank on my Journey
Many people to thank since all this began,
My Wife who has been very supportive, spent a week with me at Dialysis Training, comes to every appointment with me, does all the jobs I can't do, makes sure I eat the right things, helps me with setting up dialysis.
She also spent 4 weeks in Perth with me whilst I had a transplant and recovered, in this period she did almost everything for me even pushing me around shopping centres in a wheelchair ........ I would need another blog to write everything she does and I doubt I would have got this far on my own.
She also spent 4 weeks in Perth with me whilst I had a transplant and recovered, in this period she did almost everything for me even pushing me around shopping centres in a wheelchair ........ I would need another blog to write everything she does and I doubt I would have got this far on my own.
The Doctor that originally diagnosed my condition and saved my life
My Kidney Specialist who has got me this far
All Staff at Ward 5C Fiona Stanley Hospital who looked after me whilst waiting to have tube put in.
Renal Unit Fiona Stanley Hospital made sure everything was working before I started Dialysis, also around 6 doctors an nurses that have provided post transplant care and advice.
All at Coolbellup Dialysis Clinic and especially the nurse that trained me and also calls me regularly to see how things are going.
My Friends, Neighbours & Relatives have been very supportive and haven't deserted me, many have traveled a long way to visit me, and many call me often or keep in touch via social media, it's times like this you find who your true friends are.
Fiona Stanley Hospital Surgeons and everyone else that was in the theatre for my transplant, nice neat job and fantastic aftercare.
Fiona Stanley Hospital Surgeons and everyone else that was in the theatre for my transplant, nice neat job and fantastic aftercare.
My Employer Margaret River Home Timber & Hardware and all my work mates and customers, I have only had this Job around 12 months and Margaret River Home Timber and Hardware owners and management have supported me through my eye injury and this situation, If you live in Margaret River West Australia or passing through, please support Margaret River Home Timber & Hardware as they are locally owned and really look after their staff and you will find they are very competitive.
No doubt I would have missed a few people along the way and there will be more to thank as my journey continues, I will edit these as I remember or need arises.
Other than the links throughout my story I have added a few more useful links below.
If you want to ask any questions please comment below and I will try and answer them or help you find the answers, you will need a Google Account to comment
Other than the links throughout my story I have added a few more useful links below.
If you want to ask any questions please comment below and I will try and answer them or help you find the answers, you will need a Google Account to comment
Thank you, Paul. Someone I know and love is planning/has to go on dialysis soon and your account has been helpful. Best to you and yours.
ReplyDeleteNo worries Linda, it isn't as bad and scary as it seems and you get into a rhythm it becomes a normal part of life, I think PD is much better and more convenient, if I can help you in any way please contact me
ReplyDeleteThanks for sharing your experience and wisdom. Have you ever considered using Automated PD device?
ReplyDeleteI am on the waiting list for a Cycler but have to wait until Mid October, I think I would much prefer it..... as I go on the transplant list next month I am hoping to get a donor kidney pretty quick as waiting time here in WA is very short so hope this happens before I get to train for the Auto PD, Thanks fore your kind comments
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