End of an Era

Wheeling out the dialysis system

Sixteen years ago, when I found out that I had Multiple Myeloma, I discovered that my kidneys had been severely damaged. Every version of Multiple Myeloma is a little different. Mine created an abundance of light chain proteins. They are long and skinny but not skinny enough to easily pass through the kidneys. As a result, the filter tubes of the kidneys get clogged and die. My kidneys were only operating at about 15% of their normal efficiency.

For the next 13 years, I babied them, staying well hydrated and staying away from artificial colors, soda, and alcohol. Initially, they recovered slightly eventually getting back to 33% efficiency, but I could never get them any better.  Because I never really had extended periods of remission of the cancer, the kidneys could never recover and gradually worsened. Then 2 ½ years ago I contracted Rotavirus and my kidneys finally gave up. At the time, it looked like I would be tied to a dialysis machine for the rest of my life.

The last dialysis treatment

Then the miracles started. After my extended stay in the hospital in 2022 I found that I was in remission. My doctor only thought it would last a few months. However, to all of our surprise, I am still in complete remission. The MM isn’t gone but it certainly is hiding with no evidence that it will return anytime soon. Then in a routine visit with a cardiologist in January, he suggested that I look into a transplant. This is a concept that we never considered because we were under the impression that I would need to be in remission for five years for this to happen. But the rules had changed and after getting a thumbs up from my oncologist we started the process.

After dozens of tests and meetings, I was finally approved for the transplant in September. We were then off to the races. After Julia was approved to donate her kidney to me, we were able to schedule the operations in November.

For the last two weeks, we have been taking it easy around the house. Justin and Jason were our babysitters around the clock for the first 10 days. We would not have been able to do this without them.  We are slowly getting better. Julia has had more issues than I have probably because they had to make 8 incisions due to scar tissue. She has good days and bad days. I have been far luckier as I only had one incision and am a little better each day.

I have been getting blood tests three times a week as they adjust my anti-rejection meds. Immediately after the surgery, my hemoglobin dropped significantly, and I had to get a transfusion eventually. However, today my hemoglobin was up for the third straight test. The kidney seems to like its new surroundings and is helping the body create more blood. Things are definitely looking up.

So today was the official end to my dialysis adventure as US Renal picked up their equipment and returned it to the warehouse. Not sure I would have made it this far if I had to do my dialysis in-center. The ability to do it at home was a Godsend. Julia was more than my nurse, she was my rock. And then on top of it all, she gave me a kidney. How lucky am I?

Kidneys 101

Since it was discovered that I had Multiple Myeloma 15 years ago I have been obsessed with my kidneys. When I was first diagnosed my kidneys were functioning at only 20% of their capabilities. After chemotherapy for the cancer, my kidneys responded and improved to about 40% which is good enough to survive.

For years I babied them drinking a gallon of water every day and staying away from foods and liquids that might harm them. Despite this care, they continued to deteriorate due to the onslaught of cancer and chemo. I didn’t have kidney cancer, but the Myeloma created proteins that damaged the kidneys further.

Finally, the kidneys got to the point that I needed to go on dialysis.  They still worked but not enough to keep me alive. For the last 2 ½ years I have been tied to a machine to keep me going. First, it was at the hospital, then at a dialysis center, then the hospital, then back to a dialysis center, and finally home with Julia being my nurse and doing all of the work necessary to keep my blood clean.

When all of this started, I was not very smart about my kidneys. I was like most people and just took them for granted. All I knew about them was that they helped me urinate. Boy, was I underestimating their value to the body. Aside from passing liquid through my body, they have several other functions that are needed to keep us healthy.

The kidneys perform the following functions:

• Remove waste products from the body
• Remove drugs from the body
• Balance the body's fluids
• Release hormones that regulate blood pressure
• Produce an active form of vitamin D that promotes strong, healthy bones
• Control the production of red blood cells

I currently do dialysis four times each week.  It takes care of three of those functions in that it removes drugs and waste products and takes off about four to five pounds of liquid each session. However, it doesn’t do the rest. I have to get injections of the drug Retacrit weekly to help increase my hemoglobin (red blood cells). 

I have to be careful of what I am eating so I do not overload on phosphorus and potassium because dialysis doesn’t handle those very well. As a result, I stay away from dairy, nuts, and nut products like peanut butter, whole grains, bananas, tomatoes, beans, chocolate, oranges and a boatload of other items.  One of the first things I am going to indulge myself in will be a banana split as virtually everything in it is on my “do not consume” list.

I am down to five dialysis treatments before my lovely wife gives me one of her kidneys. One of the things that we found out during this journey is that the body does just fine with only one kidney. This marvelous organ is a wonder. Even though Julia will only have one kidney, there is only a 1% chance that she will run into any problems in the future.

Take care of yourself and take the advice that I have been preaching since I started this blog 15 years ago – get an annual physical. Without my physical at that time, I likely would have had a heart attack because my potassium was so high due to the kidney failure from the cancer. Take care of your kidneys. Stay hydrated.

This will be my last blog until after the operation on November 19th. Be good and keep the prayers coming. Maybe we can get together for a banana split when we’re all healed up.

Six Degrees of Kevin Bacon

There is a saying in Hollywood that everyone is tied to Kevin Bacon. More specifically, they are attached by six degrees of connection. In other words, A knows B and B knows C and C knows D. You do this six times and everybody has a connection to everybody. Assume everyone knows 45 unique individuals. If you do this six times, you are connected to over 8,000,000,000 people which is the world population. To give you a real world set of connections I am six degrees from Kevin Bacon. I know my wife of course and she is friends with Fortune Feimster (the comedian and actress.) Fortune has acted with Arnold Schwarzenegger in the TV show, FUBAR. Arnold has acted with Colleen Camp (a long time character actress) in the movie, Last Action Hero. She, in turn acted with Kevin Bacon in the movie, Trapped. Try this yourself and see who you are connected to.

Along this same line of connecting things is we all have a huge number of thoughts every day. Not sure you do this but every day, I can start off with one thought that takes me to another thought and then another thought. Eventually you get to a completely different thought that on the surface has nothing to do with the first.  This is where I tie this to the Kevin Bacon thought.

You are probably thinking I’m crazy but this is where I tie it all together. Not sure where this labyrinth got started but somehow, I eventually landed on the old TV show, “Queen for a Day.” I recently saw a picture of Justin riding Rollie and Fran’s (in-laws) garden tractor when he was about five. This got me thinking about Fran and how she used to love watching the Game Show channel and game shows that were 40 to 50 years old. I then went through those in my mind and I eventually landed on Queen for a Day. I am sure that very few people reading this are familiar with this show. It started as a radio show in 1945 and ran until 1957and was on TV from 1956 until 1964. The premise was that four women down on their luck would come on the show and tell their story.

From Wikipedia, “The interview(s) would climax with Bailey (the host) asking the contestant what she needed most and why she wanted to win the title of Queen for a Day. Often the request was for medical care or therapeutic equipment to help a chronically ill child, or might be for a hearing aid, a new washing machine, or a refrigerator. Many women broke down sobbing as they described their plights.”

After all four pleaded their case, the audience would applaud each. The contestant with the loudest applause would be declared the winner. They would win several prizes including whatever it was they had asked for.  I would watch this during the summers that I was home from school and found it interesting.

Again, I’m sure you are questioning my thought process here but I feel like I have won my own “King for a Life.” No prizes here except for extended life. This week I found out that I am officially on the list to get Julia’s kidney. I still have a few tests to confirm I am still healthy on November 6. As long as those are good and we both stay healthy, we will have our operations on November 19. I have come so far it is hard for me to realize that I am this close to a more normal life. It has been 15 years since I have been on either chemotherapy or dialysis. I look forward to this new freedom. As of today, I only have 20 remaining dialysis sessions scheduled. Thank you all for your many prayers. They have kept me moving forward.

Life Is Filled with Highs and Lows

It was 1961, I was 8 years old and in my first pennant race. The Cincinnati Reds were battling the Los Angeles Dodgers for the top spot in the National League. My dad would give me daily updates as the season wound down. This was back in the old days when there were just two teams that made the playoffs. The team that won the National League pennant would play the American League champion. Eventually, the Reds held off the Dodgers and would face the Yankees in the World Series.

Unlike today when World Series games are held at night to increase TV viewership, in 1961 all the games were held during the day. As a result, if you were the average 8-year-old kid, you were not going to be able to see much of the World Series since you were stuck in spelling class.  However, I was a lucky third grader as my teacher must have been a Reds fan and rolled in the black and white TV that we normally used for documentaries and turned on the game. That is when my love of baseball became a reality.

The baseball season is much like life. It has its ups and downs. Teams can go on winning streaks, but they also hit bumps in the road. Injuries happen and teams can go into a nosedive until their star comes back. The Reds had some bumps that year but still pulled through it in the end up until they ran into the Yankees in the Series. The Yankees had Roger Maris (who broke Babe Ruths home run record that year), Mickey Mantle, Whitey Ford and the irresistible Yogi Bera. It was a great year for the Reds, but the Yankees were just too good and the Reds lost in five games. It would be nine years until the Reds won another pennant. More ups and downs.

My life has been filled with its share of ups and downs but when you live to be 71 years old, you are bound to have those. Having lost both of my parents were tough times. Meeting the love of my life, Julia, was one of my great peaks. Having two wonderful children were also huge highs. Watching them become the fine men that they have become made those highs even greater.

I was a very healthy person as I entered my 50’s. Still had my tonsils, my wisdom teeth and my appendix. Then I had the shock of my life when I found out I had Multiple Myeloma, a cancer of the bone marrow. My outlook was not good as people would typically live just two years at that time with this horrible disease. I was certain I would not live to see 60, the same age that my mother died. I then started a series of chemotherapies. They would work for a while and then stop. More ups and downs.  Then a new chemo would come out and I would have new life.

This happened time and time again. Until, that is, when I ran out of new chemos. It looked like I had a couple months to live. This was the greatest low of my life. In tears, I begged my oncologist to somehow help me.  It was time for a Hail Mary with a second stem cell transplant. In the meantime, I lost my kidneys and I had to start dialysis. After suffering through four plus months in the hospital and having problem after problem and almost giving up a miracle happened.  I was suddenly in remission, a new high, one I had not experienced in the previous 13 years of fighting this disease.

The highs have continued, and I find myself in my own personal World Series. On the way up to Sedona for Jason’s wedding I received a call telling me that I had been approved by the Mayo Clinic to receive a kidney transplant. That started a weekend that was completed with Jason and Erin’s beautiful wedding. And the highs just continue.

Don’t ever get too down when you hit a low because the good times are around the corner. In 1975, I finally got to enjoy the first World Series win the Reds experienced in my lifetime. Just stick with it. The highs will come and you will have your own World Series.

The Miracles Continue

I have always been a fan of medical shows on television. You can go all the way back to “Marcus Welby, M.D.” and “Medical Center”. Then there was “St. Elsewhere,” “E.R.” and “Chicago Hope” in the ‘80s and ‘90s.  More recently “The Resident,” “The Good Doctor,” “New Amsterdam” and “Chicago Med.”  Of course, my all-time favorite was “House.” “House” was a true curmudgeon. Still, he was brilliant, solving disease mysteries that no one else could. I truly believe that I am smarter today because of these medical shows.  When I get my blood tests back, I feel informed because of what I have seen on TV.

Thank goodness I have gained this knowledge because I have had enough tests these last two months to sink a battleship as I get ready to hopefully receive a kidney transplant.  So far this month I have had the following: CT Abdomen Pelvis without IV Contrast, NM Cardiac Perfusion Rest and Stress Spect, DX Chest Anterior Posterior or Posterior Anterior and Lateral X-Ray, 6 Minute Stress Walk, ECG, Urinalysis with Microscopic, Echo Transthoracic (TTE), Abdomen MRI, Colonoscopy plus 16 vials of blood that turned into 40 results. Don’t feel bad if you don’t understand most of this. I did all of those tests and still don’t understand it all. Julia had her own series of donor tests.

In addition, we each had a series of meetings to speak to those on the transplant team - a social worker, surgeon, doctors from Infectious Disease, Hematology, Nephrology, Cardiology, and a coordinator Physician’s Assistant.  There have been meetings with the National Kidney Foundation to help us find donors and caregiving training. Unless I can use Julia’s kidney, Julia will have to care for me and I will care for her.

The process of receiving a kidney varies. There is the most traditional path of receiving a kidney from a deceased individual. This can take an extended wait time and typically lasts about a third of the time of a live organ. It could take a decade to get such a kidney. Second, there is the process of receiving a kidney donated directly from a relative or acquaintance. Lastly, there is the possibility of getting a kidney from someone that you don’t know in an exchange of kidneys – each recipient secures a donor who donates to someone in exchange for a living match.  This is the type that we will likely pursue if Julia and I are not a good enough match.

Julia has agreed to give me one of her kidneys. If we are not a good match due to factors other than our blood types, she could donate a kidney to someone else that is waiting for one. For this person to receive a kidney, they also have someone willing to donate a kidney. Chances are that there may need to be several people in this chain. The Mayo Clinic is well known for its ability to create these chains and matches. After a match is found, surgery will be scheduled but likely at different times.

Julia has gone through her own set of tests and learned that she has been accepted as a donor. If she wasn’t accepted, I would have had to go to plan B.  Plan B is the process of finding another person to donate. Amazingly, I have a few individuals that have volunteered to go through the process. It is amazing having support like this. I didn’t even have to ask. They just generously volunteered to be tested as a donor. Luckily, we will not have to go this route.

There are certain criteria for finding a good match between the donor and the recipient.  They are as follows:

1. 
   The same tissue type—aside from identical twins, no 2 people have the exact same tissue type, though a match is considered the “same” if tissues match 12 certain protein markers.
2. Compatible blood type—certain blood types are compatible, meaning their antibodies won’t attack each other. An antibody is a blood protein formed when the body recognizes another substance as harmful.
3. Negative serum crossmatch tests—this series of blood tests looks at the reaction between a kidney donor’s and a transplant recipient’s blood or organs. Negative test results mean there are no antibodies from the recipient’s blood that would destroy the donor’s.

Should I get lucky enough for all of this to happen, I will spend a few days in the hospital after the surgery. Julia will spend a night if all goes well. We will then have to take it easy for a couple weeks and should be back to normal in three months. I will be on a regimen of medications for life to keep from rejecting the organ, but I will no longer be tethered to dialysis many times a week. Through the years of battling Multiple Myeloma, I knew that my kidneys would eventually give out. Fifteen years ago, there was no option for a kidney transplant because of Myeloma. Now due to the remarkable recovery from my time in the hospital in 2022 and medical advancements, it is possible and even recommended by my medical team.

At this point, all looks well with just one procedure outstanding. We will likely know sometime in early September if we can move forward. The miracles continue!

Experiencing Life

On the latest reincarnation of Star Trek, Star Trek: Strange New Worlds, we go back in time to before James T. Kirk was the captain of the Enterprise.  Christopher Pike is Kirk’s predecessor and sits in the captain’s chair.  In an early episode, Pike is having a conversation with Mr. Spock and states, “You can’t just live life, you have to experience it.” That really struck home with me.

Initially because of Covid and then leaving the hospital with a weakened immune system I pretty much imprisoned myself in our home. It was just too risky to be out in public. Certainly not the way you want to live your life, but I just could not afford to get sick.

After spending four months in the hospital and three weeks in a rehab facility, the last thing I wanted to do was end up back in the hospital. Sadly, despite my precautions, I made two weeklong trips back to the Mayo Hospital. That was the end of 2022. Boy, how things have changed.

With the flexibility that doing dialysis at home gives you, we can pretty much set our schedule as we wish. We slowly started getting ourselves out of the house. We began by just taking 45-minute drives around the area. Next was occasionally going to restaurants and eating on their patios. Then at the beginning of this year, we would go to a movie after my weekly appointments at the Mayo for blood tests. You would be surprised how empty theaters are on Wednesdays at one in the afternoon.

We have even started to go to supermarkets and Costco. We do wear masks when we do that. Of course, we get looks from people wondering why we do it. A few weeks ago, there was a little girl in a shopping cart with her mom that hid when she saw me. I’m not Godzilla, but I think she might have thought so.

Another big step was getting behind the wheel of a car. After I left the hospital, I just wasn’t ready to drive until a few months ago.  We got up early one Sunday morning to go to breakfast and I drove us there. Its like riding a bicycle, you just never forget. Its amazing what that did for me. For the first time, I felt a little more self sufficient. I now walk three to four miles a day. When I left the hospital, I needed a walker to get around. Now I am free of all that.

We are now planning a vacation to Florida later in the year. We have our reservations set but we still need to find where I can do dialysis while we are there. We will be meeting with the social worker at the dialysis center to get that set up. It’s been five years since we went on a vacation, and I can’t wait.

You might have noticed the word “we” a lot in this entry to my blog.  I think there is something that happens to you when you almost die.  It’s like I have new life and I appreciate everything more.  I always appreciated everything that Julia brings to the table but that has kicked into a new level.  Not only has she become my dialysis nurse sticking me with monster needles four times a week, she is going to make one of her kidneys available to me. How was I so lucky to find this amazing woman?

Today, she started the rigorous testing that has to be done before you can participate in an organ transplant.  She is going to give up a kidney if she and I pass all of the Mayo’s tests. I start my testing July 1 and have to get approved by a committee to see if I am a good candidate.  It is a bit of a long shot because of my cancer and all of the transfusions I had to have over the last two years. Apparently, I might have picked up too many antibodies from the transfusions to be able to find a match.

I have already been given one miracle by God to keep me cancer free for two years, we’ll see if He has another one up his sleeve.