Our JOURNAL
OF LIVING WITH KIDNEY DISEASE
This journal is to help other people cope with living with
kidney disease and all it involves. My husband was diagnosed with
kidney disease in the spring of /97.He was generally unwell and
listless.He had a hard time doing his work .He was treated
for infections which improved but he still was unwell. In August he
was referred to a specialist in a bigger city. She could not
determine the cause of his kidney disease so she recommended a
biopsy. This was done a month later and it was determined that it
was from a bacterial infection that at one time attacked the kidneys
and left them scarred. This combined with high blood pressure
contributed to the disease.
We both attended a workshop to do with kidney disease and
dialysis and diet in November.This workshop was the best thing we
ever done as it was so informative. At this workshop we discovered
that you didn't need to be a relative to donate a kidney as long as
the blood types were the same. It worked out that both our blood
types were the same so I decided I would be tested for the donor.
The tests were very simple two or three 24-hour urine collections,
blood work,14 small vials...one needle... an ultrasound of the
kidney, chest x-ray,ecg, ...very easy tests. When his creatin
reached 500 he was recommended for a transplant and all these tests
began.BUT.....when all the tests were done on me it was discovered
that I was not a suitable donor so someone else will have to be a
donor.So this journal will continue from here about living with
kidney disease and all it involves so if it helps someone it will be
worth it. PLEASE SIGN YOUR ORGAN DONOR CARDS AS THERE IS SO MUCH
NEED TODAY. I know because my husband is on that waiting list and
the wait can be years. So now it is a waiting game for
him.......
Wed Aug 19....went to Saskatoon for the shunt to be put in
his arm but we were sent home as the doctor was called away for
emergency surgery.
Sept 23 Another trip to Saskatoon to have a fistula inserted in
his wrist. a fistula is a joining of a vein and artery so dialysis
can begin immediately when the fistula is healed.This procedure
doesn't always work tho and sometimes a plastic vein is used. This
fistula will be there for the rest of his life.
He was off work for a week wih the surgery.You can feel the blood
rushing thru the "bruey".It is amazing how fast the blood travels
throuout the body.He started to receive eprex ,a hormone that his
kidney was not producing.I learned how to give these needles and he
had them 3 times a week.
On Oct 12 I noticed that there was a breathlessness about his
speech,as if it was hard to breathe.He went to work for the rest of
the week. On the following Wednesday after work he told me to take
him to the doctor as he was having trouble breathing. The doctor
sent him home telling him that it was a chest infection.He spent the
rest of the week at home. Each nite he would tell me that we should
go to the city and see his doctor but come morning he would be
better to a certain extent. He was having trouble sleeping as his
feet were hot.
He phoned his doctor in the city and she told him if he were not
better by Monday to come up there.On Monday he still wasn't any
better so they did blood tests and it was found his creatnin was
1435.A healthy person's reads 150 or less. So on Wednesday we went
to the city.
When we got there his doctor doctor had examined him and decided
he did need dialysis so that afternoon he was on the machine.He felt
a whole lot better after just that one session but still not really
good. On Thursday, we watched a movie to determine which home
dialysis to go with.There are two kinds to do...peretoneal, hemo,.We
were going to come up to the city for two weeks for hemo and then
have a week of training on how to do it.
On Friday ,he had a operation to insert a tube in his stomach
which stays there for as long as he was on dialysis. This was a very
painful procedure.
He had a hard time adjusting to the fact that dialysis had
started and was very upset. It was an upsetting two weeks and we
were trying to decide what we would do for income,work,at home.
There was a lot of decisions to be made.
On Saturday he was receiving a treatment before we went home when
his doctor came along and asked him what he had decided about
transplants.She then asked him what he would think if he had a
kidney right then. IT WAS TOO MUCH TO TAKE IN IMMEDIATELY. IT WAS
UNBELIEVABLE..
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