Friday, June 29, 2012

Finishing up the Week

     We both had quite a bit of anxiety Wednesday night after seeing the echocardiogram and talking to the neurologist.  Aside from the neurologocal challenges, the possibility of cardiac involement brings on an entirely new element to the process which has been our primary concern.   We met first with the amyloid specialist on Thursday morning.  That went about as expected.  No new miracle drugs on the horizon.  Sort of a "we've done all that we can do" at this point in time.  He gave some helpful suggestions about trying to manage some of the symptoms.  He looked over the results  from the heart tests, and picked up the phone and got me scheduled to see a cardiologist who specializes in amyloidosis--the apointment was made for two hours later!  I wonder how long that would have taken back home?   The cardiologist was great, and very funny.  He looked over the images, compared them to those of two years ago, and confidently declared I was no worse than I was back then.   What the other doctor identified as new or additional thickening in the heart wall he explained were attributable to slight variances due to the different technicians taking the pictures and how they did their measurements.  He took a lot of time showng me his findings and explained it to me in laymans terms.  He greatly eased my mind and said he'd see me in 5-10 years.   I can live with that--literally.

     Ended my trip with a visit to my managing doctor, John Poterucha.  Such a wonderful person.   I have mentioned him before.  He was the one who looked me in the eye when I was first diagnosed and said "I can help you".  He has been my guy ever since.  He felt bad and was disappointed about the increased neuropathy.  But what I love about him  is that he at least tries to do something. So  I am now going to be on an antiobiotic to see if we can reduce the amyloid deposits.  It worked in the lab on mice, but  so far no similar results in human studies.  His approach is why not try it out?  It can't hurt, has minimal side effects, and we can always discontinue it if we need to. 

     Needless to say we were exhausted by the end of the day.  We did get the chance to meet up wth our friends Scott and Gail whom we met three years ago.  We had dinner and a chance to catch up, and plan to see them again next year.  Slept in today and we have nothing scheduled all day.  There are a lot of residents here getting released today for the holiday weekend.  Most are only getting a short reprieve, others heading home for good.  But far from the house being empty, its just a changing of the guard.  New patients and caregivers continue to arrive from all over the country.  All sharing the one common denominator:  needing and hoping for a cure.  Scarves covering heads balding from chemo, masks over their faces to protect a compromised immune system, skin yellowed from liver failure--they come in all shapes and sizes. And as they arrive and enter the doors here they are immediately welcomed as family.  Names get exchanged, help is given with luggage, and helpful hints for living here at the Gift of Life are shared.   Inside these walls they find love and support, and hopefully at Mayo, answers and cures.  See you soon, Rick 

Wednesday, June 27, 2012

Neurological Results

    The neurological tests were less than we had hoped for but about what we expected.  The objective indications show a worsening of nerve conductivity in both my legs and my arms.  This would be consistent with the growing numbness in my extremities that I mentioned earlier.  The neurologist was great and kept focused on things we can and should be doing to try to improve the nerve health and slow the progression of the disease:  try and stay active, get plenty of rest, and stay positive.  Check.

     She showed me the tests of my heart and it appears there is an increase in amyloid deposits there as well, but since she didn't have last years results to compare it to, we will be reviewing that tomorrow with the amyloid and liver specialists.  Jeanine and I are both doing surprisingly well under the circumstances.  The build up to this has been worse than the event itself.  In three years the amyloid hasn't spiraled out of control.  It has definitely been slowed by the transplant.  We plan to take it all in, process it, and move forward from here.  As my wise friend reminded me on the phone tonight, regardless of what we may be told from our doctors, always remember that there is a higher power at work as well that is not limited by our rules and limited understanding.

     If you are out there and interested, here is a link to an article that explains this disease and talks about some of the trials in progress to help curtail it:  http://www.bloomberg.com/apps/news?pid=webport_news&tkr=MCD:US,PFE:US,WMT:US&tkr2=PFE:US&sid=aATh38ZCYp.4.  Unfortunately the FDA refused to fast track the Tafamidis approval, but I am exploring ways to try to get access to that drug which is now available in England.  We will be talking to them tomorrow about the other trials that are out there as well, but at the present time I do not think they are accessible by those who have already had their transplant.

    Hot and humid here today--over 100 degrees.  I understand it has been rainy back home.  We will bring the sun and warm weather back with us when we come home on Saturday.  Love, Rick

Tales from the Porch

    We have settled in to that old familiar routine here at The Gift of Life House.  We have been here four days now, and as always, it is a profound and expanding experience being here.  There is definitely a difference staying at the original house rather than the new one where we were last summer.  While the new one is more contemporary and spacious, the old GOL house is warm and cozy.  Whereas the new one has a dining area that is 80 x 20 and all spread out, the old house has 3 smaller dining areas each with about five tables.  It simply invites conversation as opposed to fostering privacy.  And the same is true of the Porch, which to me is like an entity unto itself .  There is only one porch at the old house as opposed to three at the new one, so here you meet and greet everyone throughout the day and get updated on the daily events and tests.  As always there are incredible stories of life, success, and disappointment.

     Yesterday I ran into Justin.  He is the man that I mentioned meeting last year from Corvallis.  At that time he and his wife were in the midst of a 10 month wait for her lung transplant.  In seeing him I assumed she had had her transplant and they were back for follow up.  No.  Still waiting!  The have been here 22 months now waiting for a lung.  For whatever reason they simply can't get a match for her.  Can you imagine?  I mean, this is a nice place and all, but 22 months with no end in sight is mind-boggling to me.

     The most incredible story I heard this week was from John who lives in New York.  His wife has a very rare liver disorder where it deprives her body of oxygen due to some problem in the blood vessels.  Like so many people here, she was two years without diagnosis.  She finally went to the Yale Hospital, and the doctors there were also unsure and recommended Mayo.  But how to get her there?  She is bedridden and on oxygen.  She can't even sit up without being oxygen deprived.  John looked into a medflight:  $25,000.  He looked into hiring an ambulance to drive her there:  $15,000.  Then the Dr. from Yale calls him with a plan.  He tells John to rent a van, and the doctor himself and a respiratory thereapist  drive with he and his wife to Minnesota.  They drive straight through, and 18 hours and 32 tanks of oxygen later they deliver her to the hospital here for the treatment she needs.  Then the doctor flies himself and his assistant home.  What a saint.  She is here and struggling, but now they have a diagnosis and it looks like they are on course to strengthen her to the point where she can survive the surgery for a new liver.

     There must be six or seven different liver patients here this time.  Two have had their transplant and are doing well.  Several have been waiting weeks, if not months, for theirs.  So many here are walking that fine line between life and death each day.  Will I get diagnosed in time?  If so is there a treatment?  Can I get a transplant?  When will the organ come?  And with all of that is the guilt of knowing that the answer to their prayer for an organ means someone else, somewhere, has lost their life.  But if you value and appreciate open and honest talks and conversation, this is the place to be.  There is no bullshit here.  Wounds and emotions are wide open here, and it is an environment of total honesty and support.  Everyone, particularly those in good health, should have the chance to stay here or volunteer here for a few weeks.  It makes you a better human being.  And if you are ever looking for a worth while cause to donate to or support, think about donating to the Gift of Life.  There are truly angels at work here every day.  Rick

Monday, June 25, 2012

Greetings From Mayo, 2012

     So we have made it back.  July 7th will be three years since my transplant.  We are back for the annual check up, but more importantly, to get some objective information about the possible progression of my disease and pick the brains of the amyloid specialists.  And for me, to restore my sense of hope.

     We have settled in once again at the Gift of Life House, the original building we stayed in when we first came back for the transplant.  I look back and see that I haven't posted anything since September when my friend Jeff passed away.  I had planned to write again the next month after Jeanine and I traveled to Chicago for a biannual convention for people with my particular disease as well as the doctors and researchers that are working to save our lives.  The reason I didn't write anything back then or since was because of the information I received at that conference:  that I wasn't going to get better.  Over the years  I have had my share of physical injuries and setbacks.  Through all of the broken bones, stitches and surgeries that I have had I have always been able to convalesce, rehabilitate and restore my health and physical abilities.  In facing the transplant three years I assumed I would do the same thing.  That I would get through the surgery.   That the transplant would stop the progression of the disease.  And that through physical therapy and a positive mindset, I would get better.

     As the conference approached, and as I read more and more about the ongoing research and trials, it became  apparent that the prevailing thought is that the transplant is not a cure, and that the hope is to merely slow the spread of the amyloid.  I really didn't want to go back and hear that not only would I not get better, I will get worse.  But the opening words of one of the foremost doctors in this area said that very thing:  it is an insoluable substance that is progressive in nature and transplant can only hope to slow the process.  And although there was encouraging news about clinical trials that might help future victims of the disease, there was virtualy nothing held out for those who have already had their transplant.

     And since those opening words my biggest challenges have been mental, emotional and spiritual.  They said it is a disease that takes you an inch at a time.  The prospect and challenges of living with it are more fearful to me  than the idea of dying from it.   That is the other thing I saw in Chicago, those who suffer from the progression of the disease:  the wheelchairs, loss of bowel contol, and the continued emaciation of the body.  An inch at a time.

    I have always started my daily meditation by invoking the prayer of St. Francis.   Particularly relevant is the part that asks to restore "doubt with faith, despair with hope, and darkness with light".    And trust me, I have had many moments of doubt, despair and darkness since October.  Especially  several months ago when it  become apparent that I am getting more symptoms:  I need braces to walk, and I am losing sensation in my arms and hands.    Yet I am committed to living in the place of faith and hope and light.  It takes so much work to try and overcome the information from that conference that I found so discouraging.  And so here I am again at Mayo.  This place of so much healing and so many miracles.  Looking to meet others on paths of healing in the face of overwhelming challenges.  To talk to the doctors that have helped me so much already.  To find that place of peace and hope in the eye of the storm.    My love to all, Rick