A message to a friend

Hi:


I understand things are going very well for you at FSU.  It is because you are a very smart and confident young woman.  This is a wonderful time in your life and I am very excited for you.


I've heard that you are wrestling with whether to pursue a Ph.D. Perhaps you have already decided, but in case you haven't I want to share briefly my experience on pursuing a Ph.D.  O.k., I'm sure you are thinking what could a 45 year old due that you just met a few years ago possible share that has any value?  I know I would be if I were in your shoes.  But,  I wholly believe that it "Takes a Village," so here it goes.


Andria and I were high school sweethearts who miraculously waited until we graduated from college to get married.  When she graduated I had just started on my MS at MSU.  I had a well funded Assistantship which pretty much covered my end of our shared financial obligations and Andria worked full-time.  As I came closer to finishing my program I started working close to full-time at MSU and Andria started law school at Wayne State.  We lived in Farmington Hills and she commuted to Detroit and I to East Lansing.


I graduated and moved into a full time position in Rochester Hills at a not for profit organization (means low pay but meaningful work) and Andria continued at WSU.  A couple years into my position I started a PhD program at MSU.  Andria graduated and took a position in Port Huron.  For a while she commuted to Port Huron and I to East Lansing in the evenings for classes.  Eventually we moved to PH and I commuted to Rochester Hills then to EL and back to PH.  I really wanted the Ph.D.  I saw myself sometime in the future as a professor who did part time consulting.  I knew some professors who did that and it seemed like a pretty good gig.


Eventually I moved from my not-for-profit job to the private sector.  The money got better.  Here is an important point - as the money got better so did our lifestyle - from Ramen to actual cuts of meat as well as futons to to solid furniture and ten year old cars to  new cars.  


So, I'm into my new position, enjoying developing the work I was doing, making new clients, doing things with the Partners and along comes a three-year full ride Water Science Fellowship.  The Fellowship is designed to pay for my classes, give a decent stipend (in graduate school terms) and significant opportunity for professional growth.  It was a sweet deal.  You see I was still commuting to EL now from PH to Bloomfield Hills to EL and back to PH.  This Fellowship is like a gift from the heavens, right?


The problem is that there is no way we could take such a big cut in our combined household income to live on that stipend, even with Andria working full-time.  So I passed on the Fellowship.


I still was not daunted in continuing to pursue my Ph.D.  It just took a tremendous about of time and discipline and wear and tear on our cars.  


During this time Andria experienced a number of miscarriages and we also experienced issues with fertility.  As we sought fertility treatments, I realized it wasn't fair for Andria to have to administer her shots by herself and to not have me by her side as we worked through this very emotionally difficult time in our lives, so I walked my last walk at MSU and decided I would stop pursing the Ph.D.  


A year or two later I was able to continue to pursue my program until we started having difficulties with the adoption process.  And again, I took what I thought were my last steps along the Red Cedar River so that I could be where I was needed most.


A few years later I take a new job in Lansing and we buy our house which is blocks away from the University.  I again restart my program.  In fact, this becomes the third time I take the same Ag Economics Course with the same professor.  I proudly tell him, this time I'm going to finish his course.  And darn if a month in, my feet swell and it turns out I'm losing the use of kidneys.  I don't complete his course and instead go on dialysis.


That was ten years ago.  Last year I found out that I timed out of the system and would have to take most of the course work again not to mention that I would have to re-apply to the program that I spent ten years in.  I had nearly finished my course work and was starting my dissertation research.


My dreams have changed and I have lost the desire to pursue the Ph.D.  I spend a significant amount of time with Antonia and Jacob and of course Andria and I can't conceive of having to be away from them right now to sit in a classroom or be holed up in a library.


One of my regrets is how much time away from Andria I spent over the many years I pursued my Ph.D.  She was always supportive of my pursuit but it just wasn't fair to be away from my love for so long.  In retrospect, had I taken the Fellowship, the program would have been done in three-years and I wouldn't have missed all that time with Andria.  We would have just had to eat Ramen more frequently and make a few other economic adjustments.


While this might sound like a sad story it isn't.  Life is a crazy ride.  Thankfully each of us are very resilient.  If not, we'd be a miserable lot.  Instead, we have the ability to rebound from the many difficult hurdles that come our way.  I have learned to become an incredible Rebounder.  I think Izzo could use someone like me right now.


You are such an incredible young lady that I know that whatever decision you make will be right for you.


I am lucky to know you.


Take care, Erich

A cool picture published in Our Grand Journey: discovering the river we thought we knew.

This photo is on page 108-109 of Our Grand Journey: Discovering the river we thought we knew -http://vintagegrandrapids.com/

Removing my fistula and inserting a Graft

The following are recent posts to my Paddling on Dialysis for Kidney Health Facebook Page.

January 16, 2011

Goodbye my snake

Tomorrow I say goodbye to my fistula, what Jake and Antonia affectionately call my snake. We have had a great ten year run. It is the access that keeps me alive and keeps me paddling...

I struggle posting this type of post. For many it is too much information. However, occasionally I hear from someone who has happened on something I write, rarely mind you, but it happens, and they tell me thank you for posting. So it is with that thought- that perhaps what I write may help someone else dealing with kidney disease or crisis, that I post too much information. Thanks for reading.

For more information on what a fistula is see http://kidney.niddk.nih.gov/kudiseases/pubs/vascularaccess/

Jaunary 17, 2011

I'm posting this because I have had some questions. Always Fistula First!. A fistula is the best access to avoid infection and blood clots. No one likes needles but you eventually grow to tolerate them. After numerous sticks scar tissue develops and it becomes less painful. Of course the best to combat pain is to develop button holes, a technique that allows you to pick off a scab and place the needles through a tunnel similar to how pierced ears work (without the scab of course). My first fistulagram was after eight years of use of the fistula and my first angio was last week. My skin became very tight and was not longer able to make button holes, then it became difficult for the skin to heal. But, it wasn't until my fistulagram last week that it was determined that the walls were too thin and that there was a real risk of rupture. Please keep the questions coming.

(these are Xrays of my fistula showing the 

large pseudoaneurysms that eventually were incised 

after the vectra graft was placed)

Does this mean that you will need a new fistula made...

Eventually. But I'd like to gain as much time as I can from the graft. Because it will be more difficult sticking my right arm with my left hand after a new fistula is placed there. Also, once the right arm is used up we have to move to a leg and that doesn't sound at all appealing. But waking up with Andria at my side and coming home to big but cautious hugs from Jacob and Antonia make it all worthwhile.

So fistulas can go wrong? Do you mean the vessel part or the actual fistula tubing? In the hospital they told me they were for life which clearly isant the case! So where do they go when your arms and legs are all used up? 

:-(

They can go wrong but they are the least likely to, especially if the are being followed by a good vascular surgeon. Some people have used their fistulas for over 35 years. Every patient is different. Remember a fistula is you - nothing artificial. The blood vessel is the fistula. The artery is rerouted to a vein. The vein which is a low pressure system back to the heart enlarges when it receives the high pressure from the artery. This is how it gets large enough to use as an access. I absolutely love to swim and canoe and kayak as do my children which are 6 and 11. The fistula allows me to continue to do these things. Also, I love the fact that I don't have anything hanging on like a catheter. Home Dialysis Central has a great tutorial about establishing button holes athttp://www.homedialysis.org/learn/buttonhole/

February 7, 2011

After a couple of weeks of recovery I had the thirty staples removed from arm. As the pain of the surgery and and the swelling both subsided, I started to poke my new graft.  I am now happy to report that Dialysis Dad and graft are both doing fine.

Phi Sigma Sigma Golf Outing in Mt.Pleasant to benefit National Kidney Foundation

If you are in the Mount Pleasant area on April 16th check this out http://www.wix.com/holla4jm/phisigmasigma-golfouting
The sisters of Phi Sigma Sigma are hosting a golf outing to benefit the National Kidney Foundation. I just found out my cuz is a sister - small world.

I plan to attend.  I  hope you can join me.

Paddling upstream

After last summer's excitement of the Grand River Expedition my rapids spilled into quiet waters.  The camaraderie, active schedule, renewal of old friendships and the creation of new ones and the daily sense of accomplishment I received paddling with sixty other river enthusiasts created a palpable kinetic energy.  Even though I was tired at the end of each day and had to dialyze, I felt a sense of renewal, of purpose and of who I once was.  My first job at the Clinton River Watershed Council was to canoe its length and observe its condition from the headwaters in Waterford to its confluence with Lake St. Clair.  I was young, excited, and on the water getting paid - pretty much a riverdude's dream job.  As with all good gigs, the Expedition ended.

The Grand River's rhythm established a beachhead on my soul.  From enjoying limited excursions the year before,  I now craved the feeling of sitting in a boat and paddling upstream with Buffett's Far Side of the World cruising from my Blackberry to my brainstem and down to the peripheral nerves in my toes.  Upon reaching the upstream point where I had to turn around in order to finish in time to get my children, I maneuvered the kayak downstream and let the current bring me slowly back to reality enjoying the eddying of the current as I slipped over the rocks.

While I continued to enjoy the Grand River on my own, I changed the social dynamics of my life.  Since Jacob was now a Boy Scout I no longer was a Cub Scout Den Leader.  I chose not to continue in my role as Marble's Yearbook coordinator and since Andria was no longer the Parent Council President I no longer was its number one go to volunteer.  I resigned as a Board Member ofDialysis Patient Citizens.  While I believe it is a good organization with a dynamic staff I just wasn't feeling a connection with my fellow Board Members.  Also, while I loved the trips to D.C. - roaming the halls of the Cannon Building in search of Mike Roger's office, sitting in John Dingell's Rayburn Building Office and watching him take a meeting with IBM representatives as his handlers handed us over to a policy aide, strolling past the Capitol en route to the Hart Senate Office Building to talk to Debbie Stabenow - which sparked life in this aging political science major, I tired of becoming entrenched in the dialysis industrial complex.  I believe that true recovery from kidney disease is when one has restored the passions enjoyed before the onset.  I didn't want kidney disease prevention to become my new identity.  However, I found that without the structure of these volunteer endeavors I was rather rudderless in my pursuit of happiness.

Each day I thought about sitting down and writing but by the end of the day a home improvement project, grocery shopping, children shuttling, or dinner making had absorbed my time.  So while one close friend landed a new job and another found his way back on Broadway I just lived day by day.  Living in the moment is not easy for someone who has been a planner all his life.  To ease my frustration as I lay in bed connected to my dialysis machine, I recalled that my major goal in life that I set in high school was to wake up with Andria in my arms.  With that in mind, I suppose anything else is gravy.

As Christmas drew near, interesting things began to happen.  A carpenter who was working on our basement noticed my Fresenius boxes and asked me about dialysis.  His wife was on dialysis and not doing so well in center while using the catheter in her chest.  Apparently she just cancelled a meeting with a surgeon that day to discuss putting in a fistula.  I showed him my fistula and we discussed home hemodialysis.  Later in the week I found out that his wife had rescheduled and attended her consultation.  She was now planning on getting her fistula.  I then received a call from a fellow All Saints parishioner.  She was concerned that a local surgeon had botched her son's graft placement and inquired whether I knew about Michigan Vascular Access Center (little did I know at the time that I would soon be a patient there).  We talked at length about the situation and about connections I had at U of M.  While it wasn't much, I was there for her and her son and I think she found solace in our call.  A short while later, my regular postal carrier knocked on our door and handed me a $50.00 bill for the National Kidney Foundation of Michigan.  He said that he and his wife were touched by my efforts and wanted to make a contribution.  I was floored by his kindness.  Talk about out of the blue.

My wife and I attended the Christmas Party at her law firm.  At one point during the dinner I presented the president of the firm with a copy of Our Grand Journey:  Discovering the river we thought we knew with an inscription thanking the firm for their generous contribution and support for the last ten years.  Later that night during the white elephant gift giving the president and his wife, who own's Yesterday's Toys in Laingsburg, donated a couple of toy ping pong ball guns which were spontaneously raffled and raised $80.00 for the NKFM.  Over the holidays a couple of more donations from friends came in the mail.  Just recently I received a check for $115 from the employees of Spectra Laboratories, the place I send my monthly blood samples.  Spectra was already a corporate donor to Paddling on Dialysis for Kidney Health but to find out that their employees raised money on their own was surprising and delightful.  While I may have removed myself from actively lobbying policy makers and separated from the dialysis industrial complex, I am still able to make a difference on a more personal scale which is very gratifying.

I recently found an editor for my book.   I'm hoping this will add some current for my rudder to take hold.  Perhaps a good "hard to starboard" will help me regain the helm and set a course to finish Amos.  As I write, I will continue to grocery shop, make dinner and shuttle Jacob and Antonia because that is my true dream job.  I will also be there for those that I can help as we each make the most out of living with kidney disease.  And, as soon as my new graft that I received from the good doctors at the Michigan Vascular Access Center heals and the temperature rises a good bit above the current ten degrees I'll put a boat in the Grand and paddle upstream.