Dialysis 101

Sorry for the delay in posts. I generally like to wait until I feel good to write a post, and I really have not felt good recently. I don’t seem to have energy to do anything, and have to force myself to do the necessary things.

Anyway, this is the part of the process that becomes a grind, nothing new to see here, move along, the excitement is over. Recovery from this operation.... 1-6 months. Time required to get used to dialysis..... unknown.

I am not sure if it is just the general recovery from the anaesthesia and the operation, or just how you feel on a diet of dialysis 3 times a week. I was hoping to use the dialysis time to do something useful, but that does not look like it is going to happen. After a month of dialysis, I can only remember one person reading a book..... The rest, including me, are mostly lying back with their eyes closed, or watching TV. The process seems to make me very tired. I feel my best the day after dialysis, and not too bad the morning of dialysis.

The dialysis center itself is a curious place. The literature shows lots of healthy looking people with smiles on their faces, but the reality is very different. Lots of old sick people..... none of them smiling.... I may be the youngest and healthiest person there. (Yikes, that is hard to believe.) It has the same ambience as the chemo clinic at the cancer hospital. No doubt, everyone there is happy that the technology exists to keep us alive, but, there is no apparent joy in the process.

Anyway, my plan for situations like this has always been the same..... Keep on walking, put one foot in front of the other and keep plodding along. Several of my doctors (yes there are many) want to diagnose me with depression, and have offered drugs and/or therapy to get over the hump. I think that I will wait a bit longer before I head down that slippery slope.

Thanks for all of the comments and support.

Cancer stage

So here is the problem..... belly cut open from the sternum to the nether regions..... my insides scrambled to get to the kidneys.....  need pain meds to dull the pain.... pain meds remove any energy that might be trying to break through. So, I am trying to type a few lines before my morning medications.

No sense dancing around the big news..... my cancer is stage 4. That means that it has escaped the kidneys, and has gone looking for new places to settle. They could see that the cancer was outside of the kidneys, and cancer was found in 2 of the 25 lymph nodes that were removed.

My surgeon tells me that it is not a “really bad” stage 4.... no evidence of distance metastasis. He also says that the recent chemo may have “cured” me. I am hoping that he is right.

For now, heal up, get good at dialysis, and get a cancer scan every 3 months for the next year.

I know that “every bodies cancer is different”,” I am not a statistic”, “could live another 20 years”, etc...... I recognize that statistics are general in nature, and there are always exceptions. I am also a realist, and would rather be stage 1 than stage 4.... after all, there is no stage 5.

I want to remind everyone that this is not a tragedy. As a family, the Crains have been very lucky health wise..... no premature deaths, no wheel chairs, no one institutionalized,.... Statistically speaking, one of us was going to get some awful illness. I know that others in the family have done their part, but now that I have stepped up and filled that spot, for now at least, the rest of the family can breath a bit easier. Y’all can thank me later..... LOL

My pain meds are starting to kick in, and I can feel my IQ sliding down 30 - 40 points, so I need to wrap this up for today.

Thanks for all of the encouragement and support.

Survived again

It is Tues morning, still in the hospital..... not really due to medical problems, but a paper snafu. They cannot let me go until dialysis is organized, and that cannot be done until my “hepatitis” panel is completed. It takes 3 days, and was submitted on Thur, and should have been available by Monday. They can track it to the lab, but then “no trace”. So, another sample (drawn at 3:30 AM) submitted Monday, ready Wed.

I received dialysis on Thur, Fri, Sat, and Monday. I will have dialysis again on Wed, then likely get out of here.

I am healing well, but still feel wiped out...... normal for major operation, and normal for dialysis. They say that I will get used to dialysis, and not feel so tired..... can’t wait!!

I have collected lots of fodder for blogs, but am just too tired. Thanks to all of the folks that checked in on me, and made my hospital stay a bit brighter.

More soon.....

D day approaches

So, I had my fistula and dialysis port installed on Tues morning..... first on the list, no waiting. Got there at 5:15, and left at 3:30. First fistula attempt, at my left wrist, failed for reasons that I don’t quite understand.... bad veins or something. I was not quite awake when the doc told me. I am, however, the proud owner of a baby fistula at my upper arm, at the inside of the elbow. It should take 2-4 month to mature to useful size. Until then, dialysis will be accomplished using the catheter/port near my right collar bone that goes through my jugular vein within an inch of my heart. It is almost the same as my picc line, but able to flow a higher volume of blood. Altogether not too bad, just no showers until the port is removed. Oh yeah, no lifting more that 20 lbs, with the left arm ..... ever.....

So, it is Mon. morning, and D day is Wed. at 10:30..... Time is getting short, and I am trying to eat all of my favorite foods at all of my favorite restaurants, and catching up on the honey-do list here at Karens. I have nearly completed “getting my affairs in order”..... living trust, vehicles titled as TOD (Transfer On Death), bank accounts the same, etc..... I have placed all of the important information regarding keys, passwords, bank accounts, credit cards, and so on, into an “open in case of death” letter.

They say people don’t want to do these things because they feel that death will come as soon as they are ready. I know that it sounds morbid, but I did not find it to be so. Once I started, I felt that if I didn’t complete the process, I would surely die in the up coming surgery. I now feel a great sense of accomplishment, not just for the volume and variety of food that I have eaten, but for the entire process.

These past few days I have also been thinking about “luck”..... Now, we all would would concede that getting cancer can not be considered lucky by any metric, but outside of that, I am a very lucky guy. Many people that get sick do not have the friends, family, and resources that are abundant in my life. I am blessed with a great family, both in the East, and my adopted family out here in the west. Karen and her son Mike have made it their business to see that I get good care, (and food). Many people lost houses in the last crash, but I was able to gain two houses. I should add, that the rent from these houses has kept me out of the poor house, and allowed me to keep my head above water. I should pause to thank my friend Carl, who has always supported and helped me through my real estate adventures.

I have lived a life full of excitement, success, and, adventure, and, LOL, misadventure...... I guess that I could say that there are not many things left on my “bucket list”. I am indeed one of the lucky ones. There is no way that I have deserved all of the joy, good people, and good things that have come my way.

Now, don’t take this as a “good by” letter, it is not meant to be..... I know, ending a sentence with a preposition...... I mean this to be a “life is good” letter, I still have things to do, and plan to do them. I am also a realist, and realize that life is short, and none of us is guaranteed another week of life, and that high milage guys my age may drop over any time. When this happens for me, it will not be a tragedy.... a short life, a misspent life, a life filled with anger and fear..... tragedies all, but none of those things apply to me.

I need to wrap this up, and get back to my pre-surgery activities..... If you want information regarding the surgery, in the east, call my sister Peg, or my brother Bill, Karen will keep them informed. In the west, call Karen (661 313 8158) or Terri Lynn ((951 306 9586). I will, of course, post a blog as soon as I am able.

Code "pissed off" in the pre op

So on the 6th I left for the hospital at 8:30, after a shower and a special wipe down with what appear to be huge baby wipes. They contain special chemicals that fight infection...... also special wipes for my man parts..... apparently that is where infections hide to gain entrance into the hospital..... Of course, no food or water since the night before.

I get to the hospital, manage to “checked in”, and begin the wait. At 11:00 get called into pre op. I answer the questions, get into the fashionable paper gown, and have an IV installed. Then the wait..... High anxiety, hunger, and thirst, and more waiting..... and waiting..... at nearly 2:00, I get the news..... no surgery for you!!! WHAT????? You can’t do this to me!!! “we are sorry”... “we are very sorry”..... “we are very very sorry”......

Then they said wait and we will remove the IV, I said “no wait necessary, I will remove the IV”. I began the process, and instantly 5 people appeared, grabbed my arm, and treated me as if I were committing suicide. They quickly removed the IV..... no waiting necessary.

Of course they said it was an emergency that caused my surgery to be canceled, but I had over heard the staff talking about “over booking” of the OR, and over booking by doctors. Guess that I will never know. I am pretty sure that they have never said to a canceled patient “sorry, we over booked the room, and someone had to get shit on, and we decided it would be you”.

Anyway, I was pretty upset, and rude as I left.... no raised voices, or property damage, but they certainly didn’t have to guess what I was thinking.

I am waiting to be rescheduled.....

Less than 3 weeks

Ok now.... things are moving forward. Pre op exam on Tues. June 3rd, fistula and port surgery June 6th, and of course, kidneys out on June 18th.

I have been studying up for the changes that are coming..... dialysis takes only 3-4 hours a session, not the 7 hours that I thought. It seems that modern technology has reduced the time necessary to filter the blood, and draw off the excess liquid.

I will be going to a dialysis center for a couple of months because my fistula will not be ready for use until then, and only trained professionals are permitted to mess with the port. Apparently, it goes directly to the heart to accommodate the volume of blood necessary for dialysis, and an infection could be fatal.

Home dialysis will be available and will consist of  3 hour sessions, 6 days a week. The one day off every week appears to be for convenience, and doesn't have to be the same day every week. I am supposing that diet and liquid intake will be extra strict on the non dialysis day.  Anyway, the process is fairly sophisticated, requiring a 70 lb. machine sitting on a base that contains a large reservoir for the liquid,  a filter, and 6-8 gallons of liquid per session. The machine mixes its own liquid with help of about a gallon of dry chemicals. Chemicals and filters are delivered once a month, and the machine itself is connected to a water supply and a drain.

Dialysis must be done with a trained partner in the room due to the danger of passing out, followed by death. I expect I will learn more about this during the 3 weeks of home dialysis training.

All of this appears daunting, and very intrusive..... a huge imposition into ones life. But dialysis is really the easy part. The hard part is the DIET..... Just a few examples, no red meat, no potatoes, no milk, no tomatoes, no doritos, no ice cream, no pizza, no cheesecake, no nuts, nothing with salt ..... It goes on and on. One tiny glitter of light in the diet of darkness... NO BEANS of any kind. Add to this, severely restricted fluid intake, and your standard low sugar and low carbohydrate  diabetic diet. What is left is barely enough to sustain life. I suspect that it will be worse than cutting weight for wrestling. At least then there was always the week end binge to look forward to.

So I mention how bad this sounded to the dialysis class instructor..... Her response, “would you rather die” (I exaggerate slightly for effect).... clearly she had dealt with people like me many times before. So, I had to admit that she had a pretty powerful point. She also pointed out that there 101 countries where dialysis is only available to the rich. She went on and on, and finally I broke down and agreed that I was very lucky to be losing my kidneys, and was looking forward to the strict diet.

There will be regular blood tests to keep track of various chemical levels in the blood. The list of dire consequences, for cheating on the diet, is frightening to say the least.

Anyway, it is what I need to do, and I am hoping that my urge to live will overcome my lack of discipline, and the new diet will become a habit. I am also expecting major weight loss. In truth, I am very lucky that the technology exists to keep me alive.  Not too many years ago, I just would have gotten sick and died.
 
I am currently working on my” bucket list”. I plan to eat as much salty red meat, and drink as much milk as possible between now and the 18th. Toward that end, I took Karen out to lunch today at the best “meat” restaurant in town..... I had prime rib and a baked potato.... Today, life is good.

Next on the list of things to do

Ok now.... It has been almost 3 weeks since my last chemo, and I am feeling much better lately. I  still tire quickly, but things are getting better for sure.

On the agenda this week, dialysis class at the dialysis center on Wed, “vein mapping” with the vascular surgeon on Fri. Next week likely out patient surgery to create a fistula, and install a port. These are to facilitate dialysis, which will begin after my kidneys are removed on June 18th.

There is still no way to stage my cancer..... that will happen after the kidneys go to the pathology lab..... Stage 1, 89% chance to survive 5 years, stage 4, 16% chance to survive 5 years. Of course, hoping for a good report.

Another interesting statistic..... average life span of people going on to dialysis..... 4.5 years. Yikes, but not as bad as it sounds. That stat includes all of the people who lost kidney function due to other diseases that are ultimately terminal. I am not sure how much that affects the numbers.

It is said that everybodies cancer is different, and that “you are not a statistic”. Ok, but the numbers are real, and I notice that they bounce around in the back of my mind, and find their way into my daily decisions. I have noticed that I am giving things away, finally setting up that Living Trust, and generally just “getting my affaires in order”. Not really a conscious decision, just things that I notice.

I expect that this next  month will be the best that I will feel for a long time. I am not sure how one feels while on dialysis, but I am sure that you spend a fair amount of time with blood chemistry that is not optimal. I am hoping to minimize this issue by getting set up with “home hemo” dialysis. I know that it sounds slightly pornographic, but really is a home set up of the same system that they use at the dialysis center. The difference is that you get to dialyze  everyday, and probably spend more time in the “sweet spot” of blood chemistry. Additionally, you are able to drink more liquids, and eat a less restrictive diet. It is not for the squeamish though, as you are stabbing yourself with large needles, but I think that it is the healthiest way to survive dialysis.

I will have more details regarding all of this in the near future.

End of chemo

Well, chemo is over, at least for now. My last session, scheduled for last Tues, was canceled. I  woke up last Sun with a temp of 102, well past the 100.5 that should trigger a trip to the hospital. Karen made the calls, and took me to the hospital. Short story, I was there until Tues afternoon.... many drugs, fluids, and 2 pints of blood later, I was deemed to unhealthy for the last chemo infusion. Guess that they got tired of keeping me alive, only to make me deathly sick again.

It is not discernable what benefit the last infusion would be, but getting me healthy enough to survive kidney surgery was considered more important.

On Tues, I met with the surgeon (Dr. Daneshmand, USC Norris cancer hospital) who will remove my kidneys.... seemed like a good guy, and is one of the best in the world regarding kidney cancer. I consider myself fortunate that he is available. The surgery itself is similar to the bladder removal in its recovery period. Once again, it feels like I have signed up for a train wreck.  #5 open abdominal surgery, should have put in a zipper.

The next agenda item is a fistula (needed for dialysis), and a “port” to use while the fistula matures (1-3 months). This should happen in 2-3 weeks.

I am still tired and sick from the previous chemo. I will report more when some energy returns.

Close to the end of Chemo

Here we are at the Day Hospital, next to last chemo infusion...... the home stretch. I could never have understood how debilitating this process is. It is hard to think of an example, but..... Sometimes, I would rather watch opera, or Oprah for that matter, than get up to get the TV remote. Too tired to read, or to have a conversation. Wake up in the morning wishing that the day will be over quickly.

My hemoglobin count has dropped through the floor due to the chemo. I am not sure, but I think that is the stuff that carries oxygen to the muscles. So, I probably feel about the same as a runner does at the end of a marathon.... starts to explain my energy level! I am a bit concerned regarding my heart. The poor thing is working overtime trying to supply my bodies' craving for oxygen, but is having to deal with oxygen depletion while it works.

 I received a “unit” (could be a pint) of blood during my last infusion two weeks ago, and am getting another today. The doc wanted to do two units, but with all of the other things going into me, there is not time today. Apparently it is not a simple as turning up the faucet. I am scheduled for another unit next Tues. when I finish my chemo regimen.

It is a bit disturbing to ponder who donated the blood. The USC medical campus (beautiful and modern as it is) is in the middle of...... let’s just say an area of minimalists.... people not weighed down with expensive possessions..... you know, folks that have no carbon footprint. I did notice that I suddenly have an urge to acquire some cheap wine and a shopping cart, and have been checking out camping sites under the various bridges near the hospital. I suppose that it is possible that the donator was/will be a USC med student, in which case I will be on the look out for urges to clean my car, and eat sushi. I guess that these are the chances one must take.... probably would have been better to stay healthy.

Sometimes I forget to mention the support offered by my friends and family, both East and West coasts. Karen and her son Michael have been selfless in their willingness to care for me. I am not sure that I would survive without them, and will probably never be able to repay the debt.

I had/have no options regarding my situation, but all of the other people who offer me help and support are volunteers... it is a distinction that I consider often.

I meet with the kidney cancer specialist next Tues after my chemo infusion. I expect to discuss my surgery with him, and have him recommend a nephrologist who will handle my upcoming dialysis.

It will likely be at least 3 weeks before I start to feel normal again, so, no promises regarding the next blog update.

Tired of Chemo

Well, it is my week to feel better..... I just past my “Tues off”, and will not get more chemo until next Tues. There is a, apparently, an accumulative effect of this type of chemo that is just kicking my butt.

I wanted to write an interesting blog piece, but am really only able to let you all know that I am still alive, and kicking. This will be my last cycle of chemo. Long day next Tues, and short day the Tues. after that. I will then have 4-6 weeks to recover, then a bilateral nephrectomy...... That is the medical term.... both kidneys come out, and, I am guessing that dialysis starts shortly thereafter.

I am meeting with a vascular surgeon on Fri to see about getting a “fistula”.

 http://www.nhs.uk/Conditions/Dialysis/Pages/How-haemodialysis-is-performed.aspx

Cut and paste for a good discussion of the dialysis procedure.

I am not sure when the next update will be.