Alan Suher

Alan Suher

In 1998 I woke up with all of my toes numb.  This was the beginning of what would be six months of doctors, tests, more doctors and more tests.  I feel very lucky that after only a half year, a new Neurologist I had an appointment with, came to a possible conclusion that I had POEMS Syndrome. He said if he is right the illness is beyond him, but he knew of about four doctors, in various states, that he felt were familiar with POEMS. 

I eventually went to one of the doctors in Boston, MA. Although most doctors who are familiar with POEMS specialize in Hematology & Oncology, this doctor was a Neurologist. We started the testing all over again and then began treatment. During the six months, the neuropathy had progressed from my toes to halfway up to my knees and I had consistent edema in my feet and ankles.   During this period, I got any of my unfinish business in order, with the help of an attorney, in case I didn't make it.  To this day, I keep a file marked "In Case Of" and I update it a couple of times a year.  It is a good feeling to know I won't leave my wife and kids in a state of confusion, if something happens to me. 

I went through a number of pulse steroid treatments.  Other treatments included interferon, thalidomide, chemotherapy with fludarabine and long-term high dose prednisone.  After about two years, the POEMS seemed to stabilize and the neuropathy seemed to settle down around my knees to my toes.  

At about this time, I felt I was unable to continue working and went on disability.  Later that year I started driving with hand controls, because I knew I was becoming a danger driving a vehicle, as I couldn’t tell the difference between the floor and a gas pedal or brake.  

Later that year, I found myself in real trouble, as I quickly gained nearly 40 pounds of fluid that was affecting my whole body.  After spending over three weeks in two hospitals, the fluid finally subsided and I slowly got back to where I was before. Again, massive doses of steroids helped to resolve the problem.

During these first few years I searched the Internet to learn everything I could about POEMS.  This was a frustration in itself, because so little was published about such a rare disease. It took me nearly three years to finally find another POEMS patient who happened to live in Canada.  This individual had traveled to the Mayo Clinic in Rochester, MN to be treated and received a stem cell transplant (SCT) by Dr. Dispenzieri, who specializes in POEMS Syndrome.  

Soon I was on my way to the Mayo Clinic to see what could be done for me.  In my case, it was concluded just to treat the symptoms, because my POEMS seemed stable and not life threatening.  To complicate my case, the M-Protein was not found at that time, although I clearly had POEMS.  It seems like yesterday when Dr. Dispenzieri said to me, "you look, smell and feel like you have POEMS but your M- Protein hasn't shown up yet". 

In 2007 I returned to the Mayo Clinic, because I now had Lymphoma and needed to be reassessed for POEMS.  This time around, the M- Protein had shown up, but the treatment was R-CHOP to try and put the Lymphoma in remission.  The biggest concern was the vincristine in the chemo that can cause neuropathy, which was already a problem.  Sure enough, the vincristine got me after only two treatments and chemo was continued without that component.  It was concluded that the Lymphoma was not related or caused by the POEMS...  just another challenge in my life.

I ended up in a nursing home for two months, followed by many months of physical therapy to regain what I had lost; use of my arms and legs from additional neuropathy.  I didn’t bounce back 100% and I need AFO’s and a cane when going outdoors.  I consider my recovery successful because I can function independently.  My POEMS is stable and the Lymphoma is in remission.  

To make my life a little more complicated, I also have Wet and Dry Macular Degeneration, which has caused a loss of my central vision in one eye since 1999.  For a month in 2004, WMD drastically affected the other eye.  Luckily, Avastin injections have given me reversal in the second eye and I have maintained 20/30 vision in that eye, which is great.  Avastin had just come out on the market and if it was not available, I would be blind.  I go every month for an eye injection which is a small price to pay for vision.

So, it has been 13 years since I woke up with numb toes, but I am still waking up and life is really great. It is all in the eyes, and a few other parts, along with attitude of the patient.  I wish success stories to all those affected by this ailment.  They say the only disability is a bad attitude.

FAST FORWARD 3 1/2 YEARS LATER:

After a relatively quiet period, things started to change in early 2010.  I noticed my walking was getting worse.  As the months went by, I became more concerned, because I knew something was going on, as I started to feel more and more insecure with my cane and AFO’s.  I even enrolled in a physical therapy program for a few months, but it didn’t make any difference.  I started asking doctors about my symptoms, but there really weren’t any quick fixes, which deep down I knew.  One doctor suggested doubling my B12 shots from monthly to twice a month, but that had no effect.  I had slowly gone from a cane and AFO’s, to a walker and a wheelchair on any long distances.   In June, I had my annual exam with my neurologist in Boston and he quickly concluded my neuropathy had drastically gotten worse and he performed a mini series of POEMS tests which all came back negative.  He still concluded it was the POEMS that had become active again and recommended a number of treatments, including going back to the Mayo and seeing Dr. Dispenzieri.  That suggestion was already on my list and by the end of July, I was off to Rochester, MN.  Well, to make a long story short – my projected four day stay ended up as two weeks and my deterioration in walking was not my POEMS, but cervical stenosis (compression of the upper spine on the spinal cord).  The situation was serious enough that surgery was performed within 48 hours and my walking should not get any worse, but hopefully better in time.  As far as my POEMS, after four days of testing, the doctor concluded that my POEMS is very active and is affecting my heart and lungs (Pulmonary Hypertension), probably causing my edema and who knows what else.  The jury is still out, as the Mayo Clinic reviews my case to see if I am a candidate for a SCT.  Unfortunately, I have some complications that may eliminate me for a SCT and then I would go the Chemo route.

Before going to the Mayo, I put out the word on ACOR of my appointment schedule and asked if anyone else would be around.  Well, what happened from there is one for the records.  On the evening of July 28, 2010, six POEMS patients gathered in the lobby of the Kahler Grand Hotel for a social hour and dinner.  This group, established an unofficial new world’s record for the largest gathering of POEMS patients.  Needless to say, the meeting was both touching and informative, as we compared medical problems ranging from types of AFO’s to medications.  Some of us had communicated for years and never thought we would meet, let alone a group so large that included husbands, wives, mothers and friends for a total of 11 people.  The night flew by and when it was finally time to depart, the hugs were endless and we were emotional, as I am sure we all wondered if we would ever meet again.  The POEMS rollercoaster hasn’t been a pleasant ride for any of us, but for this one night we can all say, “the high point at the Mayo Clinic visit occurred on July 28, 2010 at the Kahler Grand Hotel”.

 

L to R  Susie DeSanctis  (WI), Ernie Kurszewski (WI), Alan Suher (CT), Toni Taft (NV), Diana (NY), Cheryl Takesian (MI)

The POEMS group with husbands, wives, mothers and friends.

I am married since 1971 to my wife Judy and we have two daughters, Heather and Jennifer and her husband Kevin.  We have three grandchildren, Landon Storm, Noah Lee and  Kaia Delaney Kulas.

LET'S FAST FORWARD AGAIN TO MAY 2011

Well, the SCT was ruled out for a number of reasons including something called Myelodysplastic Syndrome (MSD), which is a bone marrow problem and will cause the constant need for blood transfusions.  The MSD was caused by the chemo treament for the Lymphoma in 2007.  So, without the SCT, I ended up going the chemo route (Revlimid, dexamethasone and coumadin).  The program was moving along, without any or few side-effects, until colon cancer was discovered in the spring of 2011.  Just what I needed, another battle in the medical world!  At that point, I stopped the POEMS treatment and underwent surgery.  The most important issue was the lymph nodes biopsy, which ended up being cancer free.  Because the tumor had grown through the colon wall, there is always a risk of an additional spread of cancer that could not be seen in a biopsy.   Since the chemo would only drop my odds of recurrence from 20% possibly down another 5-10%, I also agreed that it wasn't worth the risk of all the side effects, including severe diarrhea.  The doctor also said that should the cancer spread, in the future, it would most likely come back in the liver and that the chemo for that would be much more tolerable.  The conclusion is: the risk of cancer is low while the chemo offers a number of negative results, so we decided to "table” the chemo.  In the coming months, there will be an active program to monitor the return of the cancer and at the same time, give some thought to restarting the POEMS treatment. I am presently in physical therapy, working hard as I try and get my strength and walking back, or at least as good as possible.  Well, I made 65 years old this past January, which in 1998, when I first learned I had POEMS, I never thought I would see.  My goal is to get in the best physical condition possible and enjoy life the best I can, with the situation I live with.   I have always said, “things could be worse”. 

IT IS NOW OCTOBER 2011

I ended the last update with the statement, "things could be worse".  Maybe I should have said, "things could always be better". Recently, I was diagnosed with something very rare, rarer than POEMS Syndrome; it is called Muir-Torre Syndrome (MTS).  It is very complicated and somewhat confusing.  I am sure I said the same about POEMS in 1998.  It all started with a few minor bumps on my nose.  My primary doctor suggested I go to a dermatologist, which is what I did.  He biopsied three sections of my nose and a week later his office called me to come into the office for a discussion.  I came in the same day and he told me he normally doesn't have patients return for biopsy reports, unless it is bad news or confusing news.  In my case, it was this rare and confusing MTS.  Rather than write a long description, with lots of confusing terms, you can go to the following website and read about Muir-Torre Syndrome:

http://emedicine.medscape.com/article/1093640-overview#showall

Briefly, the nose issue (sebaceous neoplasms) is just part of the syndrome.  The key problem is the occurrence of cancers, including colon cancer and lymphoma, both of which I have had in the past four years.  Returning cancers and new cancers are all higher than normal possibilities with MTS.  Next week I am having some minor surgery, to remove these areas on my nose, because they can become larger and turn cancerous.  In the future, I will have to be very aware of “what my body is telling me” and be monitored with periodic CT and/or PET scans and yearly colonoscopies.  A recent colonoscopy was negative, so I guess I can go another year without worrying about the return of colon cancer, for now.  We all know the key to beating cancer is early diagnosis.  It is also recommended I have genetic testing, to confirm MTS 100%, although the pathology report has already stated the diagnosis of MTS and additional testing located two of three markers that are present for the syndrome.  At this stage, I don't fully understand genetic testing, but I will in the future. Unfortunately, the MTS can be inherited and my real concern is my children having this problem.  My mother had numerous cancers, but somehow lived until 84 years old.  I had a brother pass away at 49 years old with pancreatic cancer.  The conclusion is that my mother probably had this condition and passed it on to me.  Everyone tells me about my great attitude.  Well, my mother also passed that on to me and for that I am thankful.  Dr. Dispenzieri says I have been struck by lightning twice: once inherited (Muir-Torre Syndrome) and the other acquired (POEMS Syndrome).  If I ever write a book, I think I would call it, "Struck by Lightning Twice and Lived to Write About It" - not everyone is so l lucky!

WHAT HAPPENED IN DECEMBER OF 2011?

Well, with 2011 ending, I thought I had made it through the year with only one major crisis, the colon cancer.  In the middle of the month, I had a little discomfort in my chest.  This went on for a few days.  It wasn't even pain, just some pressure.  I took Tums and it went away within 30 seconds.  I figured it was heartburn.  I called my primary doctor and he told me to take Prevacid instead of Tums.  Later, that same day, the pressure returned a little stronger than before.  We decided to go to the hospital, after all what could a doctor really do in his office if it is a real problem?  I arrived at the hospital at 2:00 PM.  By 3:00 AM the next day they had a bed for me and I was admitted.  They sensed a heart problem, but they weren't too sure exactly to what degree.  I spent the next week with tests and more tests.  Everything was complicated by the POEMS.  Finally, I had an angiogram and it was determined I needed open heart surgery.  I had two arteries that were blocked and stents could not be utilized due to the location of the blockage.  I really didn't have time to read about the surgery and didn't know my heart material like I know my POEMS.  On December 14th, I had the surgery.  They took two veins out of my leg and used them for a double by-pass in my heart.  I also had two heart valves repaired (Mitral & Tricuspid), along with a pacemaker installed a week later.  I had no idea how major this surgery was, but boy did I learn fast.  As with other surgeries, the methadone that I take for my neuropathy pain in my feet for the POEMS, stops other pain medication from working.  I am already pre-medicated at a high level for the neuropathy pain, but they couldn't give me enough to help the pain from the surgery.  I can handle pain pretty well, maybe because I have so much experience, but not this time.  A doctor told me the other day that they can solve my pain, but only by extremely heavy doses of pain killers which they don't like to do, because there is some risk involved and they don't want any malpractice situations.  So I suffered.   And boy did I suffer.  I bit the bullet for a few weeks and finally the pain started to let up.  I started walking and I was optimistic that the worst was over.  About a week later the pain returned, worse than ever, and I couldn't even lift my legs in bed.  Doctor after doctor came in, talked to me and asked me questions and left.  No one knew what was wrong.  Meanwhile, the pain medications that I had cut way down on were started up again.  Even though the medication didn't help the pain, I was desperate for anything.  I even tried acupuncture, but that didn't work.  I was in so much pain and confused from all of the meds, that I concluded I was dying.  No one told me I was dying, but I just knew I was.  I convinced Judy and my kids I was dying after two days of talking and telling them this is it, my luck has run out.  Finally, we were at the point of everyone accepting it and talking openly about it.  I called up some special friends and told them "good-bye".  The calls were brief, as I was in too much pain to talk.  I also stopped eating and drinking, as I just wanted to end the pain and life.  I basically had given up for the first time in my life.  The date was December 30th and I was hoping to make it until January 1st.  Being an accountant, I thought of the financial benefits for Judy.  Another month of Social Security, another year of a tax exemption on my tax return, etc.  Well, the first came and went and I was still alive.  A few days later the pain let up a little.  As the days went by, the pain started to go away.  For the first time in a week, I decided I wasn't dying and I was going to live.  I called up Judy and told her we are going to the Cape on Memorial Day weekend, as we have been doing for many years.  Within another week, I was discharged from the hospital and went to a nursing/rehab center but only lasted about 24 hours.  My blood pressure dropped so low that I was taken by ambulance to Baystate Medical Center.  Since I was now in a MA facility, they couldn't take me back to CT (St. Francis Medical Center) because of the state line and my critically low blood pressure.  The good news was that I really had a number of problems with the nursing/rehab center I was in, including a bed too short for my poor body.  I spent another week in Baystate.  I don't remember a lot of details but I know they took three liters of fluid out of my lungs.  I was then ready to be transferred again, and this time I went to Fox Hill Nursing & Rehab Center for three weeks.  This was my third ambulance ride in the past five weeks.  During my rehab, I decided I wanted a birthday party (pizza, cake, etc.) and I would invite everyone I told good-bye to during that terrible week at the end of the year.  The following weekend, we used the Day Room at the Rehab Center and had a party for 20 guests.  No presents were allowed, as I had already received my present -- life.  On February 1st, I left and went home, exactly eight weeks after going to the hospital, because of a little pressure in my chest.  It is now 10 weeks later and I look back and say, "wow, what a big operation that was".  It is a slow recovery.  I am still using a walker, and I look forward to being able to use a cane, but I can tell I am not ready yet.  I am going to cardiac rehab three time a week for three months.  For some reason, the neuropathy/foot pain has gotten worse since the surgery, but hopefully in time that will get back to "my normal".  Life is slowly getting back to "what it used to be", with Judy taking me to a number of doctors, every week, along with rehab.  I recently figured out that I had a stretch of 13 weeks in the hospital/rehab in the past 52 weeks, or 25% of the time.  It actually took me nearly five months after coming home to get back to a cane.  I am wrapping up my rehab next week (6/25/12) and continuing my physically therapy for another month or two.  I feel back to my normal except for my walking, which is still slowly coming along. 

During these past few months, I have also spent some time with the issue that came up right before the heart surgery -- Muir-Torre Syndrome.  As expected, the genetic testing proved positive for a deleterious mutation.  To simplify this, it means I have a gene problem that is not repairing certain problems that causes Lynch Syndrome, which causes various cancers with a high risk of colon cancer and endometrial (uterine) cancer, which is at least one of the cancers I don't have to worry about!  Since I had the colon cancer a year ago, I can get it again and I have to schedule a colonoscopy yearly, or in the coming weeks, just what I feel like doing!  To give you an idea of how much greater the risk of cancers are with this syndrome:

                                        LYNCH CARRIER              GENERAL POPULATION 

Colon Cancer                   Up to 82%                                       2.0%

Endometrial                     Up to 71%                                       1.5%    

Again, this is just a small sampling of the Lynch Syndrome of which the Muir-Torre (MTS) is a branch.  For those that thought POEMS was complicated, MTS is even more difficult for most doctors to understand.  It seems that almost every doctor I have come across, has never even heard of it.  I need a long stretch of good health before I can really be confident about my future.  The good news is my kids went for genetic testing and they were both negative.  What a relief that was because if either or both of them were positive, I really would have been heart broken and I just got my heart fixed. 

I would like to thank everyone, including my family (Judy my wife, and Heather and Jennifer my daughters)  and Kevin (Jen's husband) and their kids (Landon, Noah and Kaia), along with all of my special friends and my dear POEMS friends for all of the cards, e-mails, prayers and thoughts in helping me get well.  A special thanks to Dr. Dispenzieri for her inspirational letter in December, when I thought I was dying.  Maybe her words helped me take a few steps forward when I was falling backwards fast.  I had never given up before, but just maybe, the love of family and friends and Dr. D. were all part of my comeback.  I don't know, but I guess it was not my time to leave you all behind! 

SO WHAT HAPPENED ON OCTOBER 12, 2012?

I, along with my wife Judy, got to finally meet Barbara Trevena (NJ) along with her daughter Laurel. They were in our area (CT), because she was visiting her other daughter Courtney at Springfield College. We met for dinner and had many conversations, of which a number of them focused on POEMS. It is always interesting to meet someone face to face after years of communicating on the Internet and Acor. I was so impressed how well Barbara walked and you would never know she had AFO's on. Barbara had a SCT in 2007 and succeeded in going from a wheelchair to nearly being normal. We raved about Dr. D., just like everyone else does. I have now had the pleasure of meeting nine POEMS folks over the years. This is one of the reasons for the profile in this website; it gives us all the opportunity to get together if we are in someone’s backyard. Below are a few photos of our night out:

2013 UPDATE

I would have to rate 2013 as one of my better medical years except for my walking. My walking actually got worse which is my main concern in life. In a few weeks I am off the Dana Farber (DF) in Boston, MA for POEMS testing trying to determine if my POEMS is active. Any recommendations for treatment will be passed through Dr. D. for approval. Dana Farber is only a 2 hours car ride versus the Mayo Clinic which is 1,000 miles away and air flights always seem to cause me lots of edema.  The doctor at Dana is experienced in POEMS. The past few years I have been seeing a local doctor who has never seen a POEMS patient before. I feel like the doctor doesn’t really know what to do with me. Basically he does blood work and any testing I recommend. I am only the patient, not the doctor and with my walking not doing too good, I decided I had to be more proactive. I am still walking wearing my AFO’s and using a cane but more often using a walker due to so many recent hospitalizations.   Anyway, except for the walking issue, I was only admitted to the hospital three times. Compared to prior years, is was an easy medical year. The year did include a neck surgery and a large benign polyp removal.

I plan to have my neck re-checked as I have had two neck surgeries (2010 & 2013) and that certainly can cause this problem.  If the neck is OK, I plan on a long term physical therapy program and maybe I can make some progress.  At the same time, I have forwarded everything to Dr. D. at the Mayo Clinic for review and expect some comments shortly. I will post these comments on this website. This year hasn't started off very easy. I have had three admissions to the hospital because of fluid retention due to congestive heart failure. I weight myself everyday and might gain 10 pounds in a week, all fluid. At that point my breathing becomes labored and diuretics that seem to work are via IV. I take a lot of diuretics as it is really a balancing act which recently got a little more complicated due to Gout. The problem then becomes the control of the creatinine & BUN. No one said, "it was going to be easy"!

2014 UPDATE

As the year went by, the balancing act became more difficult and the diuretics were slowly increasing my creatinine.  The normal range is around .8-1.2.  My number is now averaging about 2.5, with a high of 4.3 in October.  I am seeing a nephrologist, as I don't want to get into kidney trouble… you know what that can mean!  Dr. Dispenzieri and I agreed on a trial of Velcade and I am also going to give pulmonary rehab a try.    My M- Protein was present in the form of Kappa, while most POEMS patients are Lambda.  As far as my walking and balance, I have so many things going on between the POEMS, heart, lungs and kidneys along with a bunch of "small broken parts".  No one is ever going to clearly figure out a clear cut answer to my problems. Maybe the Velcade will help me.  As my walking/balance has gotten worse and I am out of breath so much, I am willing to try anything at this stage.  

In July and August I went to physical therapy (PT) to see if I could improve my walking and/or balance.  Maybe it helped a little, but if it did, I lost it all after stopping PT.  I had other issues and the little bit I was using a cane reverted back to a walker, 100% of the time, as I didn't feel safe with a cane anymore.  I accepted the walker as a way of life and have four of them (one on each floor of our condo and one in the car).  With colder weather here, I already find it difficult to walk around our condo complex, as the cold hurts my entire body. I also go to the Congestive Heart Failure Clinic every few weeks.

On September 28 I left for the Mayo Clinic and was scheduled to return home on October 2.  Well, the four days turned into 10 days as I went through all of the POEMS testing and a few dozen other tests and procedures.  When I saw the cardiologist, he suggested I go into St. Mary's, the Mayo’s in-patient hospital, for a number of reasons and to get the excess fluid out of my body. To do this they gave me some injections and a diuretic drip for a few days, while reducing my intake of fluids.  They also drained 1300 cc out of the lining of my right lung, which was equivalent to 2lbs.  I also had a right heart catheterization to check pressures in the heart.

To summarize, I have the following issues:

·           * POEMS syndrome, monoclonal kappa

·           * Anemia due to chronic disease or early MDS

·           * A ddison’s disease, hypogonadism, hyperprolactine, hyperparathy and hypoglycemia.

·           * Hypogonadism currently on excess replacement

·           * Pulmonary hypertension, extreme atelectasis, high troponin and NT-proBNP, pleural effusion

·           * History of CABG, MVR< TVR< atrial fibrillation, CHF and AS on exam

·           * Progressive renal failure

·           * Non- Hodgkin's Lymphoma (remission)

·           * Over active bladder

·           * Eustachian tube dysfunction

·           * A-Fib

·           * Colon cancer (now OK)

·           * Gout

·           * Muir-Torre Syndrome (requires annual colonoscopy)

·           * Sleep Apnea

·           * Wet & Dry Macular Degeneration

IN SUMMARY:

There are a lot of complex terms above but if I were to summarize my problems, I have POEMS, which after 16 years has caught up with me and is affecting my walking and/or balance.  If you add the heart issues to this, I now walk very slowly with a walker. 

My heart and lungs are now affected with pulmonary hypertension from POEMS, as well as other issues since my open heart surgery and valve repairs, which causes it not to function normally, creating fluid retention. Due to this, I need diuretics. For 16 years I have been taking diuretics for severe edema caused by the POEMS.  Every time the diuretics are decreased, the fluid builds right back up.  All of these years of diuretics have affected my creatinine, which has now affected my kidneys.  The excess fluid doesn't all go away with diuretics and that is why I had 1300 cc (2 lbs) in the lining of my lungs.  Also, diuretics, by mouth, usually won’t get rid of fluid around the lungs.  This excess fluid along with a heart not functioning properly causes me to easily be out of breath or dyspnea.

Of all the issues, the Macular Degeneration is my biggest concern, as my vision is not good.  As long as the Avastin injections, in my eye, work every month, I shouldn't complain.

POEMS IN MORE DETAIL:

I have a monoclonal protein, IgG Kappa and my sclerotic lesions have worsened over time.  Worsening neuropathy, endocrine issues, worsening PFT (pulmonary issues including hypertensions), bone lesions, effusions and edema.  My bone marrow doesn't show a plasma cell clone, but the 20q- is present.  There was a lab mix up and the VEGF blood test was not done in error and I will have it done at home.

I guess 16 years of POEMS has taken a toll and all I can do is live with it and try any recommendation that Dr. D. has made.  Without her, over the years, I don't know if I would be here today as she has helped me fight this war.  I am not a candidate for a SCT, as I potentially have MDS (Myelodysplastic Syndrome) and the two of those would create a disaster.  I also know that the neuropathy, which is probably the worst part of POEMS, will never get better, because after so many years, my ankles are cemented and only a sledge hammer would loosen them up and I will pass on that option. 

PLAN OF ACTION:

I am going to try Velcade, a chemo injection, and see how I handle it.  We will start off with a low dose and increase accordingly.  With Velcade, as with many chemo’s, I will also take Dexamethasone (high dose steroid).  There are other options available, if I can't handle the Velcade.  It is not 100% clear, or guaranteed, what the Velcade will do for me.  It may help my fluid overflow issues, which tie into my breathing problems, and even my walking.  Time will tell, but at this stage, I am willing to try anything recommended, especially from Dr. Dispenzieri.  I have functioned since 1998, with a number of serious medicinal problems, had dozens of hospitalizations, battled through a number of life threatening ailments and made four trips to the Mayo Clinic.  I really can't complain, because I am still here and able to function, even if at a lower speed.  I also feel that even though I have been a burden to my family, to some degree, I am able to help all of them with their issues, while enjoying life as best as possible.