Wednesday, July 16, 2014

And that is why I return to Mayo.....

     Trying to convey in words the experience of coming to Mayo and the Gift of Life House is so incredibly difficult.  You have to live it to understand it.  The living environment at the house is as life-altering as ever.  The people, from all countries and different walks of life, facing incredible challenges.  Tiffany and Alki ages 20 and 16 respectively, with kidney disease and enduring the hardships of transplant at such a young age.  Both have met with complications with their new kidneys and are exhibiting such resilience and determination when all they want to do is go back to school and hang out with their friends.  The caregivers having to watch their spouse or loved one struggle each day with pain, fatigue and nausea, wishing that there was something they could do to alleviate the sufffering and discomfort.  So many people, so many stories, and so much love.

     The relationships and encounters with people here are often short, but they certainly don't lack for intensity.  If you like straight talk no holds barred conversations, this is the place to be.  And the strange thing is with many of these people you may only encounter them once during the stay.  But the honesty and openness of the exchange is such that it feels like they must be one of your closest friends and confidants.  The trust that is shown and given in exchange, the intensity of what is shared, actually exhausts you by the end of the day.  And that doesn't even take into consideration the many appointments you scramble around to each day.

     With that said, Jeanine and I found ourselves questioning whether we should continue to return here next year.  Not that we don't like the experience:  we do.  For us it is feeling different now.  Before, it was the need and the drive to get diagnosed.  Having gotten that, came the determination to get the transplant and try to get well.  And along with that came the challenge of realizing that I could die from this disease and confronting and coming to terms with my mortality.  Having done those things, the new challenge has been to accept and learn how to live with the fact that while  dying from amyloidosis may not be as imminent as we once feared, how do we deal with the debilitating  aspects of this illness and the continuing decrease in bodily functions.  How do we live with the disease?

     So we started thinking most of these tests I need can be done at home each year...the transplant seems good and we know the disease is getting worse as this weeks results demonstrated once again.  Why not just do this back in Eugene?  And then we went to see Dr. Poterucha.  My hematologist, my coordinator, my friend.  He came in the room, and having not seen me for two years, attempted to make a comment in jest about how much weight I had lost.  He then got very quiet and just looked at me and tears welled up in his eyes.  After a time he said through his tears "I'm sorry, I thought I could do more for you".  And so began an hour and twenty minutes of talking, sharing, laughing and crying about this journey we have been through together this last five years.  Where else can you find a Dr., a person, with the integrity and compassion of a man like that?  We have that here.  Ever the irrepressable one, he came up with a game plan of yet another regimen of prescriptions to try.  Again instilling in us hope and the determination to try.  So assuming my echocardiogram  indicates that my heart is not too impacted yet to withstand these new prescriptions, we will give something new a shot.  We will see if maybe we can succceed in arresting the progression of these symptoms.  And that is why we come back to Mayo......

Monday, July 14, 2014


After a two year absence from Rochester, Jeanine and I find ourselves back at the Gift of Life Transplant House for another annual checkup.  It has now been five years since my transplant, and about seven since I became noticeably symptomatic.  The shuttle in from Minneapolis and these first few days have brought back so many memories for both of us about the journey we have shared and the time spent here.  There are flashbacks to the many people that we have met, special moments we have shared, and the many miracles we have witnessed.

Within minutes after entering the GOL again we began making the familiar connections we have so often in the past.  Patients and their caregivers, where they are from, how long have they been here, and what they are being treated for.  And the word that came to my mind was "clarity".  Life for people here has been stripped of its many daily aspects and interruptions of job and kids and bills and neighbors and lawn care...and the list goes on and on. Here their life has been distilled down to its essence and their life has become clear as they focus on getting diagnosed and getting well.

It is not unique to this place, although I think the stakes are somewhat higher.  We have all had this experience of clarity, where life has become so in focus and simplified.  I'm sure it is like that for women as they focus on caring for their newborn child.  My brother-in-law Ed is experiencing that clarity now as he hikes the Pacific Crest Trail.   Athletes must feel the same as they focus on a big match or important tournament.  Nothing else matters.  Their lives become inspired by the single goal and purpose, and that goal gives each day a known direction and meaning.  The rest of the world almost doesn't exist, at least for a brief time.   Life becomes so much simpler and more meaningful.

You sense that when you walk in these doors, and in the people you meet here.  Everything "out there" does not matter, at least not right now.  It is all about that next test or procedure, addressing the meals and medicine needed for today, or getting in that walk that is needed to maintain some exercise.   They all have clarity of purpose while they are here.  You can feel the energy.  You can sense the focus and direction.  It is truly remarkable to be around this environment.  The hope and determination to get well.  The support given to one another.  The shared bond felt towards one another.

Clarity.  That is the word that comes to mind as I think back to how Jeanine and I were during those initial visits and stays here.  But it feels different now.  Its like the athlete after the tournament has been won (or lost).  Its how my brother-in-law will feel when he finishes his incredible hike.  Its how people here feel when their treatment is done or the surgery has been successful and they get to go home.  Its like:   "now what?"  That event which provided  so much clarity is now over.  So how do I carry that sense of purpose forward as I go back to my old life?  It is such an intriguing question.  I sense that I am in that place now; that I am at a different place than so many of the people that are here right now who are immersed in the clarity of their current experience.  Jeanine and I are in more of the "now what" phase as we have moved on and are trying to bring that sense of clarity and purpose to our lives outside of Mayo and the GOL.

I expect my tests this week to be unremarkable.  I believe things have stabilized as far as the transplant, and I know that the amyloidosis has continued to progress.  For us this week is about seeing some old friends, meeting with some of the doctors that have been so good to us, and remembering what is was like five years ago when we had such clarity.   

Sunday, May 18, 2014

Testing Update

"I saw my reflection in the window and didn't know my own face, gonna leave me wasting away on the streets of Philadelphia...night is falling and I'm lying awake, I can feel myself fading away, on the streets of Philadelphia."  Bruce Springstein.

I was struck by the poignancy of these words recently when I saw myself in the mirror.  The physical appearance looking back was just a paltry shadow of what my body used to be.  I look like a skeleton with clothes draped over it.  Its almost like I am outside my physical body most of the time, just observing this body and what is happening to it by this disease.  My continuing struggle is not to identify who I am by this body that harbors my true self.

Since my last post I have started re-taking Diflunisal in hopes of slowing this progressive condition.  I've been on it about 3 months now with no apparent negative side effects.  I look for and remain open to the healing possibilities that may come.  Am I improved as a result of the drug?  Am I any better?  Perhaps.  That I can even say "perhaps" is a modest victory.  I feel I may be a little more alert, and my energy seems better.  My GI problems are slightly better, but that may be due to me managing my diet and food intake better.  I haven't noticed anything with the neuropathy.  Those symptoms have continued to decline.  I walk with the assistance of newly purchased forearm crutches most of the time now.  Those steady me a lot more than my cane does, but seem to scream "I'm disabled" when I use them, but it is what it is.

My son's don't say too much to me about my condition, but it must be hard for them to see me deteriorating before their eyes.  They are amazing young men, and I couldn't love or be more proud of who they are and are becoming.   They both just amaze me sometimes.   My oldest son Sam recently made a rare inquiry about my condition as I was laboring to pedal my stationary bike:  "To be honest Sam, my balance is getting worse and despite my efforts, I keep getting weaker."  Later that evening I received a text from him:   "Dad, I've been thinking about what you said tonight.  Just want you to know, you're the strongest, most balanced person I know."   And from my son Jake, who was away at college at the time, writing  me about how he has observed my battle with disease:  "Just please know dad that I do think of you every day and you still influence my decisions.  You're my superman dad."

I bring this up now and share these comments because both have been weighing heavily on my heart. I think I mentioned in my last post that because of the Diflunisal results I wanted them to get tested.  Both got tested; both have the gene.  My brother Ron also has the gene; my brother Dave (the one with no kids!) is in the clear.  Not exactly the legacy I wanted or hoped to pass on to my kids.  Ron too has started the Diflunisal, and I believe the boys will be starting it soon.  There is no clear data on it preventing the build up of the amyloid deposits, and with our form of the disease, you don't always get the symptoms even if you have the gene.  But at least it gives them something to fight with,  and be proactive.  Hopefully it will never be something they confront in their lifetimes.

Sam and Jake are so much wiser and more capable than I was at their age.  Both seem to have taken this in stride and let it go.  I sense in both of them an ability to set this possibility aside and just move on with their lives.  I think it has reinforced in both of them a sense of living for today and take advantage of opportunities given them.   Jeanine, the boys and I will be convening in Kauai for a well-deserved and overdue vacation starting tomorrow.  Although I'll be limited in the activities I can participate in, I look forward to the time we will all have together, and to introduce them to my favorite island.

I'l be retuning to Mayo for my five year transplant anniversary in July.  There is a good chance that Jake will be going with me this time.  I'd like for him to see Mayo Rochester as well as the Gift of Life House:  places that had such an impact in my life.  Until next post.....Rick

Saturday, January 11, 2014

Update 2014

     Well, I made it through another year.  Had the holidays at our new home for the first time.  Hosted several parties and lots of people coming and going.  It was fun, exhausting and energizing all at the same time.

     On the amyloid front I continue to get progressively worse, but my spirits are good most of the time. I chose not to attend the Chicago familial convention in October figuring I could get any updates I needed from the ASG website--which I did.  I missed not getting to meet other patients, but the trip felt a little overwhelming at the time.  My energy level continues to diminish, and my mobility is noticeably worse.  I'm down to 3 1/2 days a week at work and seem to be managing that ok.  My weight is down to 125 lbs, and I have a lot of fatigue.  I have a ground floor office now which really helps, and I think its time to give up my regular office on the second floor.  Climbing those damn stairs is just getting to be too much.

     The  diflunisal trial is over and looks encouraging.  While perhaps not a two thumbs up (1 3/4?), it looks like there is now an approved and recognized option available in the US that may help stop or slow the progression of this disease.  It is encouraging enough that I plan to talk to my sons about getting tested.  If they have the gene, they could start taking this now without any real known side effects, and it could help hold off the potential onset of any symptoms.  Meanwhile, other trials are ongoing and may prove even more effective down the road.

I contacted Dr. Poterucha about me restarting the diflunisal as well.  I was in the trial five years ago, but had to stop once I had my transplant.  The trial data could be skewed by transplant recipients, so that is an exclusionary criteria for the trial.  In addition, Dr. Poterucha felt it could further compromise my kidneys which were already being taxed by both the disease as well as my immunosuppressants.  However, given that the drug has now shown some proven effectiveness, and given that I'm getting worse anyway, I talked to him about resuming the diflunisal while monitoring my ongoing kidney function.  We are going to give it a try.  It won't be a cure.  Or at lease they don't expect any reversal of the damage that has been done.  But maybe it will help stabilize the progression and let me hold on to what I still have and prolong my life by a few more years.  Statistically I am already in the end of life expectancy range measured from the date of symptom onset (its now been 7 years).  And while those are just averages and numbers, they are attention grabbing.  Why not try something?, is how I feel.  At least to feel like you have a chance to fight back.

     As it says in the St. Francis prayer that I recite so often:  "Where there is doubt,  Where there is despair, ...hope.  Where there is darkness, ...light."  I continue to try to let my light shine in hope for healing, while maintaining faith that whatever happens, all is well.  Blessings to all.

Tuesday, October 29, 2013

No post since June 14?  I've been delinquent.  Anyway, had the PET scan which couldn't rule out cancer, so I ended up going in for a biopsy of the lung in early July and NO CANCER!  Nice.  Turns out it is a fungal infection in my lung.  Sounds like its pretty treatable, but I'll be on a new prescription for about six months to treat it.  I have about two months of it left to go and it doesn't seem to be causing any real side effects.

I've reduced myself to 70% time at work.  It is really starting to take a toll on me, but once I'm there I still like my job, and I love my co-workers and partners.  I am determined to keep working as long as I can, and as long as I can perform my work properly.  So far that has not been a problem.

My symptoms continue to slowly worsen.  My weight is down to 125 lbs, primarily due to muscle atrophy from the nerve damage.  I look at myself in the mirror and hardly recognize the reflection ay more.   I made it to the Duck game again last week but it is getting pretty difficult getting in and out of the stadium.   The ongoing challenge has been to let go of identifying myself by my physical appearance ad abilities.  Although my body shell continues to diminish, I remain the same person inside.  Who I AM has not changed.

My youngest son, Jake, moved back home with us in August for the next year.  His energy and vitality are infectious, and it has been a real boost for both Jeanine and I.  As always I am looking forward to the upcoming holidays--its my favorite time of the year.  Blessings to all, Rick

Friday, June 14, 2013

Another Challenge

So the CT was done last Friday, June 7th.  Getting results back in Eugene is not quite as efficient as getting them at Mayo.  It took several calls being the "squeaky wheel", but we finally got the results to a lung specialist and they got me in yesterday.  The bad news is he's about 90 % sure I have lung cancer.  As he was going on about treatment and additional tests and removing part of my lung, I was thrown back to four years ago when Dr. Zeldenrust told me about my amyloid.  He too launched right in to discussions about transplants, and food restrictions and I was sitting there still trying to process the diagnosis.  You sit there in disbelief and it is so hard to take in what they are saying to you.

I liked the Dr. a lot.  He was vey straight forward and didn't mind repeating things several times for me.  Had I known I was going to get a diagnosis during that appointment I wouldn't have gone in alone.  Another set of ears would have been helpful.   The one thing that was very confusing to him is that I am not and never was a smoker, nor have I been around much second hand smoke.  If so, I think he would have finalized my diagnosis right then.  As it is, he is ordering a PET scan in hopes that it might not be a malignancy, and to see if it could have come from some other source of cancer origination in my body.  If that test his positive he is going to do a "navigational" biopsy.  Apparently the growth is in an awkward spot to get at for the usual biopsy method, so they will have to put me under.  I it is for sure cancer, he is pretty sure it is stage one, and the treatment is to remove the lower 1/3 of my right lung.

Wow.  One deadly disease is not enough?  My concern is if I can whether another major surgery?  I'm already pretty weak and down about 35 lbs.  When I had the transplant I wasn't too worried because I was still in pretty good shape.  Now?  Not so much.  He is talking 4-6 weeks recovery time.  I can barely keep my muscles going now.  I work out as much as I can, but the atrophy continues.  How weak will my legs be if I'm down for four weeks?  Not to mention the eating and GI problems I have to deal with every day.  Well, one step at a time.  Next up, PET scan.  Maybe I'll beat the odds and he'll be wrong about the cancer.  In the interim I think I''ll explore non-surgical options to cancer and see what my alternatives are.

Saturday, June 1, 2013

Latest results

So I wrapped up two days of tests in Arizona with mostly good news.  The neuropathy which I perceive to be worse is consistent with a slight worsening of nerve conductivity based upon my EMG test.  That was not unexpected.  The cardiac involvement does appear to have progressed, and that was a pleasant surprise.  I thought I was going to get out the door at that point with an overall good checkup, but then was told they had found a "spot" on my right lung that wasn't there a year ago.  Nothing was discussed about what it might be.  The next step is just to get more information.  So I will be getting a chest CT when I get back to Eugene.  A little bit of investigation on the internet indicates these are often benign nodes or some scarring from some infection.  We'll see.

The question to contemplate for next year is whether to go to Scottsdale or back to Rochester for my annual visit.  Scottsdale actually exceeded my expectations.  The care and competency of the Dr.s and staff was comparable.  But as I indicated previously, its on such a smaller scale.  It was so much easier to get around to the various appointments as they were in such closer proximity to each other.  I know that if it were to involve any type of long term stay I'd go back to Rochester.  The Gift of Life House would play a big part in that choice.  But if its only for a few days, you don't really need the same type of support in your living arrangement.  And if only for a few days, you won't really make those type of connections anyway.  That will be a decision for next spring.  Well, on to the next challenge next week to see what the CT has to show me.