The War on carcinoid cancer is almost always lost in the liver. Steve Jobs was able to get a liver transplant but it still was not sufficient to win the war. My liver was about 20% involved 2 years ago but I also lost the left lobe so I don't know where we are at now. New liver growth does not come back cancer free so that does not reassure me.
Recurrent bowel obstructions are something I have experienced first hand and, although they get more and more difficult to address for the surgeon, they will not kill me if eventually addressed. Lung and bone metastases are possible but, again, they are slow growing compared to the liver so I considered that a possibility but the liver was still the danger area.
I never considered the kidneys as endangered in any way. The tumors have not been recorded as moving into the kidneys so there was no reason to worry. Even in mid 2012, when the surgeons knew the tumors were wrapped around the ureters, I did not even think about the possibility that it would affect my kidneys. In November 2012, the surgeons said I would need uretal stents forever and, even then, I did not think there was any worry about my kidneys.
I was told they needed to be swapped in 3-4 months and that I could just have that done by a urologist in Colorado Springs so I got together with one in Colorado Springs. The urologist felt that 3-4 months was too soon and we were going to try for 6 months. Well, at 5 months, the stents got plugged and we swapped them. My Creatinine level rose from a normal 1.0 to about 2.2 after the swap which indicated kidney damage but I did not know that. So much for being a partner in my treatment...
The new stents used a material that should be good for 12 months but we decided to swap at 9 months because the previous stents plugged earlier than the doctor expected. Well, at 9 months, we did a urine culture and determined that I had a urinary tract infection and we got on some antibiotics. Unfortunately, we chose an antibiotic that is not recommended for people with significant kidney damage and, again, not taking an active position within my treatment hurt me because my creatinine was now up to 6 and rebounded to 4.
Now I knew that things were bad because the urologist asked me "who is your nephrologist?" and my answer was "What is a nephrologist?". I now knew that I had to be an active participant in managing this situation and I started reading and learning. One of the first things I learned is that creatinine is measured on a logarithmic scale similar to decibels or earthquakes. This means a creatinine of 2 is roughly twice as bad as a normal creatinine of 1. A creatinine of 3 is about twice as bad as a creatinine of 2 and a creatinine of 4 is twice as bad as a creatinine of 3.
Now the exponent base is not exactly 2 because my current creatinine of 4.5ish gives a liver function of about 15-18% rather than the 9% or so that a 4.5 would give with a base of 2. Regardless, it is bad and, when it hits 10% or so, I am going to be forced onto dialysis.
The other thing that the kidneys have done to me is destroy my hemoglobin levels and make me quite anemic. Prior to my the start of 2012, I consistently had hemoglobin levels of 15-16 which is exactly why my lungs would never give out before my heart, legs, or arms. Since the start of 2012, my hemoglobin has been on a fairly linear decent. I hit a hemoglobin level of 12 around my mid 2012 surgery. It dropped to 10 in mid 2013 and it is currently hovering in the 8s, getting as low as 7.7.
What that means is that my body is not able to get nearly as much oxygen from my lungs to my heart and other muscles. We live in Colorado Springs, at about 7000 feet above sea level and the air here has about 80% of the oxygen available at sea level. People then often go skiing and most ski mountains have summits around 11000 feet where the air has about 66% of the oxygen at sea level. Many tourists and locals also go to the top of Pikes Peak either by foot or by car where the oxygen is now at 58% of sea level.
Now, I have had a couple of years to acclimate to my 50% reduction in oxygen carrying capability so it is not quite that extreme as people who fly here from sea level and immediately do these things but I can completely sympathize with them. I am continually fatigued, and my face is paler that normal. I get completely winded walking up two flights of stairs and have to stroll for the quarter mile walk into work or I will have to sit as soon as I reach the building.
I hit my lowest hemoglobin level of 7.7 about a 1.5 months ago and got a blood transfusion of 2 units which helped for a short term. I am getting injections of aranesp every other week to try to kick start my bone marrow. I take 325mg of iron twice a day to give my body plenty of iron to build hemoglobin and we are trying to avoid too many infusions as they carry more risk compared to aranesp injections. Our goal is to get my hemoglobin back up to at least 10 which should help me out quite a bit.
Let my kidney situation serve as a warning to you! Take control of your health. You and your doctor should be working together and you should not just assume (s)he will always do what is best for you. Get second or third opinions. Read and research what is going on. Make sure that you are managing your own life rather than just being a passive passenger.
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