My Kidney Disease: transplant thoughts

Early transplant thoughts (April-Oct)


A few things triggered the urgency for a kidney transplant in my mind:
1.  Dr. Rodby had started mentioning the dread 'dialysis' word in his emails since April 2015.
2. The 'restless leg syndrome' hit home in late August and I felt dialysis was imminent
3.  Rajesh's test results were a turning out as a favorable match (Sep )
4.  In Late Sep I got some good news at my UW Eval visit.  Even though the waiting period on transplant list there was 2.5 years for my blood group if I switched to UW as my Primary transplant center they could use my RUSH listing date as a start date for my waiting period.  This meant that I already 'paid-up' on my time on the UW list and could get a deceased donor kidney any day.


My single goal at that point was to avoid dialysis.  I was confident I would get a kidney soon one way (Rajesh) or another (deceased). Already at Stage V I modified my diet (dropped the chicken, brought down the toxic BUN levels and started on the Iron tablets to boost the Hb).  My blood draws went from once every 1.5 months to every other week in early Oct.


Next major thing on my to-do list is to look into the insurance coverage for a surgery at UW.

My Kidney Disease: UW Listing

Listing at UW Hospitals, Madison

I had always known that you could be listed at more that one center for a deceased donor kidney.  If you choose to go 'multiple listing' make sure that the center belongs to a different Procurement zone (more details forthcoming a little later). Madison was.  One reason I had ignored it was that this would require me to follow-up annually at more than one transplant center just to stay listed.  Meaning more time away from work, more tests.  I had read in the online newspaper article that Rajesh's friend (another Rajesh) who lived in Madison sent me that the wait list there was approx. 1 year.  This was significantly better that 5 years at RUSH (I had just completed 2 of those years on the RUSH list).  I contacted UW and sent them all the test results I had ( my google drive came in handy to share my test results) and also a link to my blog on the RUSH listing to the nurse coordinator - Jess.  This was in Jul 2015.    I got an eval appointment for end of Sep.  Later that same week I had the third annual follow-up for continued listing at RUSH.  I sent these results over to UW as I received them.  I kept UW updated of all the blood test results, medication changes, doctor follow-up visits, and Rajesh's progress at RUSH.  I also got the name of the Living Donor coordinator at UW and sent it to Rajesh.

A week after Rajesh's visit RUSH wanted him to see an infectious disease specialist as he tested positive for TB and there was a small chance of that transmitting to me as via his kidney.  There was a lot of confusion about why this was not discovered earlier as well as what the best course of action/treatment was.  At my RUSH follow-up I had asked the surgeon what a post-transplant follow-up would look like.  I was not quite pleased with the follow-up protocol they had as it required me to visit RUSH twice a week for 5-6 weeks immediately post-transplant.  This was mainly for blood tests and dose adjustments for anti-rejection meds.  I had asked the same question earlier that week to the UW surgeon and the nurse.  They require me in Madison twice in the first 5 weeks to meet with the surgeon.  All blood tests would be local and results and dosage adjusted over the phone and email.  More convenient.

During my visit in Oct 2015 to see Dr. Paner for my annual follow-up for RUSH I was telling her about a potential living donor transplant at the end of the year.  She had noticed that my Hb was down to 7.4 (severe anemia) She brought it to my attention that I would need to get the Hb up in time for the surgery as this would be necessary.  I had already started taking Ferrous Sulfate (Iron tablets) a few weeks earlier but this did not prevent the Hb from dropping. I could not get a blood transfusion prior to the transplant.  I asked Dr. Dodhia for a prescription for Procrit.  I started on weekly injections in mid-October.

My Kidney Disease: Diet

ER visits and Dietary changes
The emphasis on lowering the K intake was significant.  This rules out two of my favorite foods- potatoes, bananas and many nuts. A baked potato or a single banana high in K (almost to 900 mg).  Previously, in Sep 2011, I had to rush to the ER as my K value in blood was 6.3.  Anything over 6.0 is considered and emergency.  At the ER they gave me a dose of Kayexalate and this quickly cleared the K on blood.  I was admitted to the hospital for 2 nights.  I learnt that high K (hyperkalemia) can cause heart problems and is capable of stopping the heart.  And unlike b.p. hyperkalemia is not measurable at home.  Once out of the ER, Dr. RR suggested that I take Kayexalate after I eat high K food.  High K was clearly caused by CKD but is also promoted by ACE Inhibitors- in my case the Enalapril.  However, Dr. RR asked me to continue with the Enalapril for its kidney-protective value.  I started on Kayexalate, once a week in addition to avoiding high K foods from the list.

My next trip to the ER was in Feb 2013, again for high creatinine and potassium.  I had just returned from India and had a fever upon arrival.  That's when I learnt that dehydration can cause your serum creatinine to be high.  After this started drinking more water.  I was advised to have 3 lt. per day.


So now I had lowered my Sodium (Na), Potassium, protein and increased the water.  Lowering the protein started to have its effects.  My muscles started to weaken noticeably in about two months. Increasing the water caused the Na levels in blood to go down to dangerous levels.  Dr. RR asked me to cut back on the water.  He said that low Na would lead to dizziness and confusion.  I had no such symptoms.  Moreover, my body got used to the water intake and I would feel thirsty if I reduced the water.  At that point Dr. RR decided to removed the HcTz portion (diuretic) of the Enalapril-HcTz.  My b.p. remained stable and so I continued with the 3 b.p. pills and the Na levels came up to the low end of normal range.


At my first KTC visit I had picked up some literature that described changes in the levels of Phosphorus (P) and since I did not see thiese tested asked Dr. RR if was necessary.  He added it to my standing order for monthly blood draws.  My P came back abnormally high and so started on phosphorus-binder- TUMS.  TUMS is a source of Calcium (Ca) which binds P.  Along with this came a list of food high and low in P.  My diet changes once again.  I started cutting down on dals (lentils) and rotis (wheat) and being vegetarian at home I was dependent on eating chicken for my proteins. Even chocolate was taboo. Another unintended consequence of high P was that the TUMS taken to counter it caused constipation for which I started to use Metamucil and Pericolace tablets daily.  The Phosphorus levels came down a little but not by much and the doctor added Calcitrol.  Calcitrol is a form of Vitamin D given to increase the Calcium levels which would help with the P reduction.

Along with these changes 3 very significant parameters also started to change.  The hemoglobin (Hb) started to drop.  I have always been chronically borderline anemic probably due to the early stage CKD. My body had adjusted to the lower Hb levels without a problem. Along with the rise in the creatinine my Hb started to drop below 9 mg and I started to sense it.  I would have to stop more frequently to catch my breath.  Dr. RR had already introduced erythpoietin (EPO or Procrit) as a possible treatment to shore up the Hb.  I was avoiding this as this would mean going to a clinic to get this injection weekly. This was inconvenient.  Plus it was not too bad.  Along with the limited breathlessness came a sense of tiredness increasing towards the end of the day.  Well, later on I had to start on Procrit because it then became a necessity.

The second value of importance is the eGFR (estimated Glomerular Filtration Rate).  This is a calculated estimate and measures how well your kidney is filtering fluids.  This is a parameter used in CKD staging also.  For example, eGFR of 15-30ml/min would be Stage 4. Well, I was at Stage V, the last CKD stage, in Jun 2015.  My eGFR was 11. Dr. RR had started mentioning 'dialysis' asking me to be mentally prepared for it.

The third number that really had me turn towards dialysis was the blood urea nitrogen (BUN).  This was part of my monthly blood tests and started to climb noticeably.  Like creatinine there was no way to control these values except through diet.  In mid-2015 along with my creatinine crossing 5.0 the BUN crossed a 100.  I had no symptoms of it.  In the early August tests the BUN was 134 and simultaneously I had the symptoms of 'restless legs' (RLS).  This was the weirdest feeling I've ever had.  And it affects you most when you are ready to sleep at night.  Your legs start to shiver uncontrollably.  If you try to hold it down, your entire body would pulsate.  Effectively, the RLS did not allow me to sleep a wink for 8 nights.  Driving to work was becoming difficult.  Working a full day was requiring multiple cups of coffee to stay awake.  The RLS got worse to the level that my legs would vibrate even while sitting.  I informed Dr. RR and he recommended I start on Requip. He also told me that there was no guarantee it would be effective and that I should consider dialysis.  The RLS was due to the toxicity in the body and will need to be removed.

Since the dreaded 'D' word was spoken and I knew it would be life-changing for me I started to consider what I could do diet-wise to lower the BUN.  I began with the simplest thing I could do right way.  Stop eating chicken.  I would eat chicken in the form of sandwiches or wraps whenever I could.  Chicken was my main form of protein now that beans and lentils were out due to the K or the P controls.  Cutting out chicken made the difference in the BUN which dropped to 78 and after 3 weeks of talking the Reuip I stopped taking it and the RLS also went away.   Good riddance.  Because, the Requip would get the night's sleep I needed but also made me a zombie during the day!!  Also, 1 les meds for the day was better.

Cutting chicken meant that I had to supplement my protein some other way.  I resorted to having egg-whites (egg yellow has the P, avoidable).  However, over a period of two months I started to feel weaker due to the reduced protein in my diet.  I continued to have whey protein and egg-white which would still ad up to only a third of the daily value.  This along with the reducing Hb was making me weak and tired.  It was noticeable.

The good news was that my brother, Rajesh, had already getting himself tested at RUSH as a potential kidney donor and his HLA tests were already known to be a good match.  This was around the time when the dreaded 'D' words were first spoken by Dr. RR. But there were many more tests to be done before he is officially approved.  Since he was in San Jose, CA, Rajesh's blood tests were done there and results were sent in to RUSH.  It was a slow process and he was following it up efficiently.  Meanwhile, Dr. RR felt that since dialysis was imminent and this would mean frequent follow-up with the nephrologists he wanted me to see another nephrologist closer to home.  Dr. Dodhia was Dr. RR's student at RUSH and was referred and in-network with my insurance.  Dr. Dodhia gave me some sights into the types of dialysis.  There were two main types based on where the dialysis could happen- in-center (hemo-dialysis) or at home (peritoneal).  He also put the fear of kidney disease as to what could happen if I delayed the dialysis- endocarditis (infections in the heart muscle), or neurologic symptoms.  I tried telling him that other than the recent RLS and some breathlessness I had not bothersome symptoms.  I felt he was a panic-monger but then I was biased.  He was simply recommending based on his experiences with CKD patients.

Dr. Dodhia asked me to consult with a surgeon to get a PD catheter implanted.  I kept that appointment and told the surgeon that I had tickets to go to India for a month and the surgery would come in the way. She was ok with scheduling the surgery at short notice if I needed it.  I would keep her informed.  One of the questions in relation to CKD she asked was 'are you making urine'.  I was.  One of her concerns was with my bleeding tendencies due to hemophilia.  I realized- perhaps she has not done surgeries on hemophiliacs.  The next time I met Dr. D he wanted to, again, have the PD put in this time by a surgeon at RUSH.  I pushed back again saying that I was feeling better with no RLS, and my BUN and creatinine was better (the 'no chicken' changes).  Meanwhile, Rajesh was to visit RUSH for a personal meet with the transplant team and get more tests completed.  Things were looking good and I knew I just had to hang in there with my diet and my routine tests.  You can follow Rajesh's experience as a he went through his workup at RUSH in his blog.

My Kidney Disease:RUSH Transplant Listing

Creatinine on the rise

Even though my b.p. was under control my creatinine continued to rise.  I was trying to figure out what I was doing wrong or what I could do to control the creatinine.  I knew that the b.p. could no longer be the cause and turned to look at my diet. I started getting blood drawn on a regular basis- once every 1.5 months.  The prescription was for CBC (complete blood count) and CMP (complete metabolic panel).  With every blood draw my creatinine would rise by 0.1 or 0.2.  By mid-May 2012 my creatinine level was close to 4.0.  Dr. RR told me that if this trend continued and the levels crossed 6.0 I would need dialysis.  I was not prepared for this. He also advised me to get listed for a kidney transplant at a center.I had a few choices to go to in Chicago for a transplant and I chose RUSH.



Listing at RUSH, Chicago
Getting listed a Kidney Transplant Center (KTC) is a necessary first step towards finding a donor kidney.  The process is lengthy with multiple and long appointments and a series of tests.  KTCs are normally at University Hospitals.  The KTC's financial coordinator contacted my insurance to get the visits and tests approved before scheduling.  In turn the insurance appoints a case manager who worked with me through the entire process until transplant.  May case manager is Caryl Taylor.  Earlier, I had written a post on the process of my getting listed at RUSH.  One of the key learnings at the KTC was from my meeting with the dietician.  I was asked to keep my daily protein intake to 25 gm.  I also got a list of high, and Ok potassium (K) in foods.  They also told me that I would need all tests redone once a year to stay on the transplant list.  In addition, I had to get blood drawn, monthly, and mailed for cross-matching with available donors.  This was sent via USPS to a 'Gift of Hope' center.

My Kidney Disease: second opinion on b.p.

Second Opinion on b.p. meds

While the b.p. was once again uncontrolled, the creatinine levels started to creep up.  In May 2009 it was 1.9 and by Jun 2011 it was 2.9.  This rise was alarming enough that I sought a second opinion.  I reached out to Dr. Azmi Kabbani, a nephrologist in Atlanta over the phone and explained my situation with the b.p, creatinine and hemophilia.  He recommended a new drug- Hydralazine. This drug is the category of vasodilators.  Dr. RR prescribed it. This is normally prescribed to be taken 3 times a day.  I started on it and the effect on my b.p. was almost immediate.  Since I was already taking Enalapril-HcTz and Amlodipine once a day I decided to reduce my Hydralazine use to one a day.  I have stayed on this 3 tablet regimen to control my b.p. to date (2015).

The only diet restriction I was following at this point (2011) was to reduce my salt intake.  Excessive sodium from table salt was known to cause an increase in b.p.

My Kidney Disease:progression

The Progression

The earliest record of the progress in my CKD was the doctors noticed in 2002 that my creatinine levels had risen and was 1.3 (normal < 1.0).  This was during the investigation to have a large blood clot removed from my hip.  One thought is that the large clot, also known as a pseudotomor, which was the size of a football in 2003, could have put pressure on the kidney and exacerbated the CDK.  Nobody knows.  The doctors were hesitant to do a kidney biopsy for fear of causing an internal bleed.  I saw a nephologist, Dr. Roger Rodby (RR), at RUSH, Chicago for the first time in 2005.  He was referred to me by my hematologist then, Dr. Valentino.  Dr. RR continued my traetment to maintain my blood pressure with Enalapril.  He believed that Enalapril was kidney-protective.  Also, to help my kidney he also added hydroclorothiazide and started me on a low dose combo pill- Enalapril-HcTz (HcTz is a diuretic).  His hypothesis on the CKD was that either it was caused by prolonged untreated hypertension of due to the hepatitis B exposure.  I was exposed to Hep B due to blood transfusions to treat the hemophilia in India.  I also saw a hepatologist, Dr. Shah, at RUSH who investigations (2011) ruled out Hep B as a cause for the CKD,  Meanwhile, my blood pressure, did not remain under control and first Dr. RR tried increasing the Enalapril-HcTz.  To this he added a new medicine- Toprol, a beta blocker. This worked, however, it made me very drowsy during the day while at work,  Toprol also caused my pulse to drop significantly to 50s. After a month (2011)with this side effect Toprol was dropped and Amlodipine was added.  Amplodipine is  calcium-channel blocker.   This again was not effective beyond a year and the hunt was on to find a drug combination that work on my b.p.

My Kidney Disease:Beginnings

The Beginnings

The origins- when and the how of it- is not clear to me.  I do not remember. I am 55 years old and also have hemophilia.  However, having hemophilia is not known to predispose to Chronic Kidney Disease (CKD). CKD is occurs normally as a result of diabetes or high blood pressure b.p.) with excessive use of pain-killers (narcotic) being another possibility.  I do not have diabetes (no family history either).  However, I believe, the other two factors ( b.p., pain-killers) may be the contributing factor.

The earliest signs of kidney disease, I recall, is from my late teenage years, in India.  The first signs were the froth in urine.  My hemophilia was such an overwhelming issue with the lack of any treatment into my 20s that high b.p. was ignored and never treated.  In addition, I have been taking miscellaneous pain-killers available to me to control the pain from bleeds in the joints.  A significant contributor, I feel, was when I was taking one or more capsules of the drug (Proxyvon), which I consumed daily for several months after my hip bleed which caused significant nerve damage.  I am never sure that Proxyvon was the main reason for CKD, but that's certainly my most used and effective pain relief.  For the sake of closure - Proxyvon is banned in the US and recently also in India.

My CKD was first diagnosed, formally, when I came to the US, in the early 1990s, and I saw Dr. James Brandes, who was nephrologist at the Medical College of Wisconsin, Milwaukee.  Along with early stages of CKD he started treating me for the high b.p. with a low dose of Enalapril.  Enalapril, an ACE inhibitor, was effective.  His main advice to treat CKD was to reduce my fluid intake (mainly drink less water).  His rationale was that the kidney works like a pump and "you should tax your pump a little less".  I complied with this rule for over 10 years.  My CKD remained stable with a serum creatinine value a little over 1.0.  The frothy urine was my main symptom of CKD until my early 40s and controlling my b.p. was the only treatment.