If you
have kidney disease and are working towards getting on a Kidney Transplant list
or preparing for kidney dialysis the medical system in the US takes a
comprehensive look at you. In this topic
I plan to recount my history with, understanding of and treatment for and
around kidney disease. To add value from
time to time I will include actual numbers as I demonstrate disease progress or
changes. I'll try to stay focused on the
kidney but would have to touch on the other ailments, such as hemophilia, to be
comprehensive. I am also including notes
on lifestyle changes I have had to make, especially with my diet. I'd like
questions, comments and patience from the readers as I will write only when
there is something new to report.
So here goes...
My hematologist is Dr. Valentino at
RUSH in downtown Chicago and he referred me to a Nephrologist, Dr. RR, at
RUSH. I have followed up with Dr. RR for
the past 4 years. To set the baseline:
In 2002, the numbers were- serum Creatinine (1.3 high end of normal), urine
protein ( >=300 mg/ml, normal is 'negative'), hemoglobin ( 14.1, normal > 13.5),
potassium (4.8, normal < 5.3). My
current (11/2012) readings are all abnormal: serum Creatinine (3.2), urine
protein (Large A), hemoglobin (10.1), and Potassium (6.3). In the past year Creatinine has fluctuated
between 3.2 - 3.9. I have blood and
urine tests every 2 months to monitor these values. I have email or text
message (emergency) communications with Dr. RR and see him annually. I had my
first visit to RUSH to get on the Transplant List on Jul 9, 2012. I am not yet
listed but hope to be on the list by the end of 2012. My healthcare checklist
seems to increase every 3 weeks.
July 9, 2012
I had two appointments at RUSH on July 9th. The first one, with a cardiologist, Dr. K was
had been postponed a couple of times already since originally setup after my
return from India. During my India trip
following an EKG there was a diagnosis of LBBB (left bundle branch block). This was a follow-up appointment. The EKG was
repeated followed by a prescription for ‘Regadenoson SPECT MPI W/Nuclear
Imagine, and ECHO Thoracic Complete’.
The first drug-induced stress test.
The second appointment that morning was my first appointment with the kidney
transplant team. I met with Carita, the
transplant nurse, who explained me the entire process. Then I met with the dietician and the
Transplant Surgeon, Dr. SJ. Dr. SJ
ordered US Abdomen, Chest X-rays and another US to study vasculature. Approx. 30 tubes of blood was drawn. Dr. SJ
also required me to get a colonoscopy.
Carita arranged for me to get all these tests done on one day-Sept. 7,
2012. This would make it easier to not
miss more than one day of work.
Sep 7, 2012
The started empty stomach for the US abdomen followed by a meeting with the
Transplant team’s Social worker. She
explained to me how the insurance would cover a transplant and what I should do
if the coverage was not 100%. At this time more blood was drawn. I then went
for my ECHO and Stress test.
Oct 18, 2012
I got the appointment for a colonoscopy through my primary physican in
Aurora. This made it possible for this
to get done at RUSH-Copley which was just 5 miles away from home. The night
before, Oct 17th, I followed a protocol and drank a lot of stuff to
clear my colon. I drank some more again
at 1 am. Then at 8 am my wife and I went
to the hospital and checked-in. The GI doctor was KJ whom I had seen a month
before. He had some Hep B panel blood work
done also looked at my ECHO results and had determined that I was ready for the
colonoscopy. I infused 3000 IU Factor
just before the procedure. The procedure itself took only 20 mins under mild
general anesthesia. It was over before I
knew it and KJ stopped by to tell me his findings prior to discharging me. The results were good for 10 years.
Meanwhile, the results from the blood work on Sep 7th came back
and a low titer of Hep B virus showed up.
This required me to be checked out by a Hepatologist, Dr. D, at RUSH.
Nov 1, 2012
Dr. D ordered an MRI of liver and more blood work. The indication for a
liver biopsy came after Dr. D saw the reults from a special test- FIBROSpect
II. This is a serum panel of biological
markers associated with the process of liver fibrosis. I have a history of Hep B surface antigen
positivity for many decades and Dr. D wants to make sure that
immuno-suppression following kidney transplant would not prompt hepatitis to
surface. Prior to this test very low level of Hep B DNA was detected. So the FIBROSpect and now the liver biopsy.
The liver biopsy itself is to be done transjugular. The thought of someone
so close to your throat, let alone slitting it, is not very comforting. I suppose the Drs. know what they are doing
and I’ll have to trust them to do it well.
I am expected to arrive at 11:15 on Thursday, Nov 29, 2012.
Nov 29, 2012
The liver biopsy went off smoothly.
I woke up early on the 29th and took my B.P. meds with water
and had a glass of Sprite. I did not
have anything to drink after 6 a.m. I had eaten an apple the previous night at
10 pm and nothing since. The challenge
was to keep from feeling hungry which is harder during the day, especially when
you see food around you and family members having their breakfast. I also
infused a single dose of Factor at 6 am. At the hospital, once I checked in and
changed, the nurse drew blood to measure bleeding time. Then I waited. I was
rolled into the procedure room around 1:30 pm. I infused a double dose (50
U/kg) of Factor just before I was wheeled in. A radiology tech scanned the
right side of my neck to find the jugular vein. I moved over to the procedure
bed. I remember the nurse covering me up with multiple warm blankets and
injecting me with the sedative. I must
have slept off, almost instantly. Not sure I was woken up or someone woke me
up. I heard voices, all on my blind side (I was on my side facing left and the
right side of my face covered). The procedure had begun. Of and on I felt some light pressure around
my neck. I heard some snapping when they took the biopsies. I was back in the
room to be monitored for 3 hours. The nurse got me some food and a drink. My blood pressure was monitored every 15 mins
and 2 hours post-biopsy they did a blood draw to check the pro-thrombin time so
see if there were any bleeds. I had additional blood drawn to measure
paraproteins. These and a urine sample
were prescribed by my hematologist, Dr. LB.
12/5/2012
I got 2 calls yesterday. One from Marisol, the hepatology nurse and another
from Dr. LB, the hematologist. The liver biopsy showed low level hep B viral
activity without cirrhosis. This will need to be treated prior to getting on
the kidney transplant list. I have the
option to continue to see Dr. AD at RUSH ( inconvenient) or find someone
locally near me. I have written to Dr.
KJ, the GI who did my colonoscopy, to recommend a doctor at Copley/Dryer in
Aurora. My thinking is that that I may
be able to work from home on days I need to see the hepatologist.
I get a call from Carita, the transplant nurse. The doctors want my ‘light immunoglogulin
chains’ (paraproteins) in blood to be investigated further. On the paraprotein front the news is
mixed. The immunoglobulin levels are
normal and this rules out any myeloma which was suspected originally. This is also corroborated with the findings
from the skeletal survey in 2011.
However the paraprotein levels (beta 2 microglobulin is 10, normal <
3) remain high and would need to be looked at.
Not sure if this will come in the way of transplant listing. According to Dr. LB who spoke to Dr. SJ,
transplant surgeon at RUSH, the transplant team will discuss this. Dr. SJ wants
me to follow-up the paraproteins with Dr. SS, hematologist-oncologist, at
Dreyer. LB said it’s possible that the ‘light chain disease’ may be causing
renal failure. The diagnosis can be made
only from a bone-marrow biopsy.
12/7/2012
Dr. LB reported today that the urine results are normal. No paraproteins. So I do not understand what it means to have
paraproteins in the serum but not in the urine. Will research. The search for a
hematologist-oncologist and a local hepatologist is on. I have contacted Dr.
PV, a hem-onc, suggested by Dr. LB. They
are trying to schedule a date where I can see Dr. PV and also get the bone
marrow biopsy done on the same day. The
first appointment would have to be at RUSH.
12/11/2012
Dr. KJ, suggested that I see Dr. SM, a hepatologist at Dreyer. I have the
appointment on Dec 13th. I
have requested the medical records from Dr AD to be faxed to Dr. SM.
12/14/2012
I met with Dr.SM for a half hour on 12/13.
He is of the opinion that if I did get transplanted I would have to
start on Hep B meds right away. I do not
need any treatment as of now. There is
no damage to the liver (Stage 0) and treating at this stage would be wasting
expensive medicine. He will send his recommendation to Carita and on the
Transplant Team. The medication he has
in mind is Entecavir and I would need a renal dosing of these meds (0.5 mg, one
every other day). I will await a
response from the Transplant Team before I start any new meds.
01/04/2013
On the BM biopsy, the date has been set to see Dr. PV on Jan 4th
, 2013 at RUSH. Well, Dr. PV did not see me that day. He handed me over to Dr. AP to see me
instead. Dr. AP is a female
oncologist. She explained to me that a
BM biopsy was the only way to confirm with any degree of certainty that I have
MGUS and to rule out myeloma. She consoled me that looking at the preliminary
data, the fact that I have had light chain disease for over two years and a
negative skeletal survey that the chances of progressing to myeloma are very
small. She ordered another skeletal
survey since the previous one was 2 years old.
I infused 3000 U of Factor VIII and went in for the biopsy. The BM biopsy
was performed on the left hip bone.
There were 3 rounds of anesthetics, one deeper than the other. After a 7 min wait after the last shot the
technician went in with the drill which I could not see but could clearly
hear. I was awake through the whole
procedure. At a couple of moments the pain was deep and unbearable despite the
anesthetic. The entire procedure took only
5 mins. They put a band-aid at the drill
site gave me some tylenol and I walked back to my car. I was asked not to take a bath for 2 days and
to change the bandage once after 24 hours.
I was fine the next day.
01/07/2013
I scheduled an appointment for a skeletal survey and got it done. This is a series of X-rays of every bone in
your body, literally. This takes a good
half hour to get done. The results
showed no lytic lesions in the bone ruling out myeloma, once again. However, there were some calcifications
observed in the left first rib and lung area which needed to be followed
up. A chest CT without contrast was
ordered.
01/10/2013
The BM biospy and skeletal survey results were reviewed and Dr. AP called
me to say that it was indeed MGUS and that she would clear me for the kidney
transplant. I booked my tickets to go to
India.
01/14/2013
The chest CT showed some benign granuloma which Dr. AP would like my
primary physician to follow up on every 6 months.
Now I am back to Carita, the transplant nurse- asking her what next? She told me that the Transplant doctors would
meet on 1/22/2013 and that she would present my case for listing. This in itself was good to hear. After the meeting Carita informed me that my
listing has been approved pending the financial approval from my insurance.
This could take anywhere between 2-3 weeks.
On Feb 1, 2013 I called Becky, my insurance case manager, and she let me
know that the insurance had approved and sent a letter to RUSH. I left for India on Feb 2, 2013.
On Feb 10, 2013 RUSH sent me a letter stating that I was wait listed on the
kidney transplant list.
