A long week of tests has come to a close. This will be the first time I leave here without fear of what is to come. As far as the transplant is concerned, my Dr. said my "report card couldn't be any higher". That was great to hear. I won't see them again until next July. Surgically speaking, everything is great.

My neurological tests showed that there was no improvement, but that doesn't surprise or discourage me. They basically just tested my feet and lower legs, and I knew they hadn't improved. They are the furthest away in my nervous system and will be the last to heal. I can definitely see changes in my thighs, I feel stronger, and that is very encouraging. I see this as basically a test of trust, acceptance and patience.

We were fortunate to see several friends while we were here, and we all are going to try to reunite once again for our one year checkups. I am exhausted right now, but feel better than I have in months, and remain firm in my belief in ability to be healed. Love to all, Rick

From Jeanine: Rick has a couple of big tests today. We meet with our liver doctor at the end of the day and we should know by then if his nerves are truly starting to regenerate and "wake up." We think they are. I'm off to buy some needed items for the Gift of Life house. Sister Jane was not shy in the least when I asked her what she wanted. We both really miss staying there, but have now seen all our friends since they too had to be here for their 100 day checks. We talked to a young woman who just had a baby and she was in for her 10 year check. She had a heart and double lung transplant from the same donor and was doing fantastic. The miracles keep happening around here. Let's keep our fingers crossed.

Two days of testing down and two to go. I met with the transplant team yesterday and everything is going well. I get to stop taking 3 of my medications which is great. There were a couple of potential small issues with aspects of the surgery which the surgeon basically said don't worry about it. I've been given the green light to start pushing my exercise and physical activities to their normal levels, but was cautioned to "listen to my body".

The best news was today with the neurologist. Two of them actually worked to confirm their observations, but they both felt and believe that I am showing neurological improvement for the first time in over 2 years. I have wanted to hear and believe that for so long, I just started crying. My feet are not showing much improvement yet, but my thighs were stronger, and parts of my leg that were previously dead to most any sensation, were showing signs of life again. They said that seeing improvement this early is very unusual, but that they were cautiously optimistic. The news was very encouraging to say the least, but it doesn't guarantee how much things will or may come back. For me it was just such a needed boost after all of this time.

They are going to try to objectify my results with some tests Friday morning, and I am hoping the machine proves them right. In the mean time we have had a chance to reconnect with some old friends here and we look forward to getting home Saturday. My love to all, Rick

Well, here we are back at Mayo for my 4 month follow up visit. It is clear and cold here in Rochester. We were not able to get a room at the Gift of Life house this time. We will go over there for a visit this afternoon to see if there is anyone there that we know, and we will also tour their new House which should open next week.

I have 8 different tests today--nothing too intrusive. I am expecting everything to check out well. It seems as though things are going along ok as far as the surgery which is the focus this week. I will use this opportunity to hopefully find out more about my chances for neurological improvement. They will be doing some neurological testing today and tomorrow, so we will see how that goes.

Hope everyone is doing well. Love, Rick

Hello to all my friends and family. I thought I would touch base and update my blog. Things seem to be progressing well. The number and doses of my medication continue to get reduced, so that should help boost my immune system. I have been feeling good as far as the surgery goes. My energy level is improving, and I have put on about 4 pounds since leaving Rochester.

Last May 26, Jeanine and I celebrated our 25th anniversary. Unfortunately, our time and energy at the time was consumed with my pending surgery. We just had a belated celebration on the island of Kauai where we relaxed in the sun, explored the island, and connected with old friends. I did one fairly strenuous hike with the aid of some hiking poles, and enjoyed swimming in the ocean and testing my limits a little. My legs and lower body continue to be challenged, but I am of the belief they will continue to get better. Nerves just take a long time to heal, so I have to be patient.

I return to Mayo for a week of scheduled tests on November 2d. We will see some old friends at that time, and I hope and assume we will continue to get good news. Hope everyone out there is doing well. Love, Rick

 Happy 25th Wedding Anniversary to us - 

Rick and Karla (childhood friend from Hood River, OR) at Karla's home in Kauai. Jeanine and Rick finally had a vacation !!!!!

Rick walking to Secret Falls in Kauai. He did great !

Some friends from Portland stopped by yesterday and said I needed to update my status on the blog for those who live out of town or haven't seen me since my most recent trip to Mayo.

We have been back in Eugene for 2 weeks now. Everything seems to be going ok so far. My weekly blood work has been checking out well. I am trying to exercise each day. I am walking over a mile now. My legs are still really compromised and it remains to be seen if or when they will improve. There was a lot of nerve damage done before they were able to do the surgery. My neuropathy in both legs is pretty significant, but will hopefully improve with time. But without interaction from the nerves, I really can't strengthen my leg muscles, and with all of the numbness my balance is not too good. However I am able to walk and that is saying a lot. I believe that I will continue to improve from here on.

I am going to work two 1/2 days this week and next and see how that goes. That shouldn't be too taxing, and if it goes well I will build up my time from there. I am scheduled to go back to Mayo again the first part of November, and hope to reunite with some old friends at that time, and get some more positive test results. I probably won't have many posts until then. Assume that no blog news is good blog news. Until then, my love to all. Rick

Mayowood Estate

From Jeanine:  Walking to Mayowood. Charles Mayo lived on 3,330 acres. I took a tour of his mansion and had a great day walking on his property.

Gail goes home !!

Gail looks terrific in her new duck attire - thanks to Rob and Jolene.  We were happy to see Gail and Scott before they left.

Bye Bye Rochester

Other than a bacterial infection which I am treating with anti-biotics for two weeks, the Dr. was very happy with my tests and said everything looks great. Leaving here on Thursday. May stop over in Seattle for a few days to see family and friends there, but should be home over the weekend. Se you all soon . Rick

A poem on the sewing machine at the GOL

The gift of healing is
an ever-changing journey.
The path is sometimes smooth,
the road is sometimes rough.

But always, the journey is a
beautiful tapestry
woven of yesterday's memories
and tomorrow's dreams.

The gift of healing is an ever
changing journey with threads
of faith and courage
intertwined among the gentle
colors of hope.

And though the road is sometimes
long, and our hearts sometimes
grow, weary,

There is joy in the knowledge
that we are walking ever closer
to the healing gift of peace.

My test results continue to improve. There are no signs of any rejection, so that's good news. They did find that I have a bacterial infection which they are not taking lightly. They have put me on an antibiotic to deal with that and will watch it closely. They still have moderate concern about a possible bile duct infection, but that is looking less likely. Just to be safe they will keep me here a few more days. They will run some more tests on Wednesday, and if my numbers are stable or continue to improve, then we will come home as scheduled on Thursday.

It was probably good that we came back here even though it was a hassle. Had a few things arise that are of definite concern and we are glad that it happened here. I feel confident things will be fine when we get back home. Looking forward to seeing everyone again soon. Love, Rick

Good News

My blood tests from Thursday showed an improvement in my enzyme levels. The ultrasound of the liver looked good, and the biopsy showed an absence of rejection. They will keep me until Monday to do more blood work, and absent any problems, then let me come back home.

They think the problem with the enzymes is due to either a slight obstruction in the bile duct which they don't think requires any further treatment at this time, or could be attributed to some type of intestinal bug. Neither of these possibilities necessitate any major concerns at this point.

Had a slight scare this morning when a tube was removed from my bile duct. Apparently there was some brief leakage reulting in some major abdominal pain, but fortunately it resolved itself within a few hours. So it looks like another weekend at the Gift of Life, then back home.

See you soon. Love, Rick

No News Yet

Ended up waiting almost 5 hours for my biopsy. Given the late start we won't have any results until Friday afternoon. When we get some news we will be sure to post it. They did do an ultrasound and told me that everything looked good, but that they will review it more closely Friday as well.

Settled into our new room at the Gift of Life House. Several old friends are here, many of them leaving this weekend, so it was nice to have a chance to say goodbye. Lots of new faces here we have yet to meet.

Hoping for some good news and a simple solution tomorrow. We will let you know. Love, Rick

We're here !

From Jeanine: We're very happy to be at the "GOL" once again. It's a very calm place for both of us, and we still know many of the residents here. Rick goes in at 7:00am tomorrow for blood work, and then it's off to the hospital for another liver biopsy. We should hopefully know something in the late afternoon. Rick is mentally ready and had a good time on the front porch catching up with everyone tonight. The fireflies were dancing everywhere; I just can't get enough of those little mesmorizing insects.

Mayo Revisited

My weekly blood tests are showing an increase in my liver enzyme levels.  That is indicative of possible rejection, so I have to go back to Mayo for a liver biopsy and further testing.  Although this is a bit of a setback, it is pretty common.  If it is rejection, it is dealt with by some steroid injections.  Sometimes it just takes a while to calm the immune system down so that it doesn't attack the new liver. 

It could also be attributed to other causes unrelated to rejection, and that is what the biopsy will reveal .  So it looks like we will be back on the blog again much sooner than anticipated.  I knew about a week ago that this was a possibility, so we have had some time to mentally prepare for this.  It was sure great to be home and to see friends again.  Hopefully this shouldn't take more than about a week, and then we will be back home again.  Rick

HWBM Summer BBQ

Welcome back Rick !  As our friend Bill once asked, "What kind of a resume do you have to have to work for you guys anyway?" Love you all !!!!

Another view of the Mayo complex

This shot was taken from the mall.

Harmony

Dale Morse and Rick

Miscellaneous photos: Dale visits from Eugene.

My pals sanitized our entire kitchen !

From Jeanine:

Such a treat !  These wonderful friends spent a few hours throwing away all of our old spices ( 3 garbage cans full) and food. The oldest spice was some "Old Bay" from 1989;  they kept it in a plastic bag to show me.  Hey, gimme a break, I know YOU all have at least one outdated item in your pantry. :) Oh, sorry Deb - Jake just informed me that you never have "old stuff" in your cupboards;  I believe it.

A happy man

Jeff Daehn "The Carillonneur"

Jeff gave us a private tour and played for us !  It was an amazing way to say Good-Bye to Mayo.

The 23-bell Rochester Carillon

In the bell tower of the Plummer Building.  Rick had to climb 5 flights of stairs to reach the Carillon.   It was constructed in the 1920s and came from Belgium.

Rick with Charles and William Mayo in the bell tower

Happy Hour on the front porch at the "GOL"

Gail and Rick get haircuts

Lookin'  mighty fine !

See you Thrusday

Spent Sunday running errands and making plans to come home. Went out with our friends Scott and Gail to do some shopping. Gail is battling multiple myeloma, and going through chemo before doing her stem cell transplant. She was having issues with her hair falling out, so she and I both went to the barber and got our heads buzzed to ease the transition. Photo to be posted later.

When we got back there was a huge motorcycle rally for the Ronald McDonald House across the street from us. There were over 1000 motorcycles, Santa showed up, there was music; it was really pretty incredible.

All my test results we reviewed this morning checked out. The kidney function was ok, barely, but they said that would continue to improve. I asked the Dr. about his experience with people with my condition, and he said about 65% will show some neurological improvement with time. That was the best statisic we have heard so far. I have an ultrasound this afternoon, and my 48 staples across my belly come out tomorrow along with one last tube that is in my stomach. Tomorrow marks 3 weeks from the surgery. After that day I get to return to a normal diet, and I stop taking two more of my medications. All in all, a great morning!

Can't blelieve how short of an amount of time we ended up spending here. We had expected a more prolonged stay, but needless to say, we are looking forward to coming home! Love, Rick

Got through yesterdays kidney function test without any apparent problems. Three hours of continuous water consumption and bladder emptying, with the threat of a catheter if I didn't completely empty my bladder--that was a lot of fun. Last big test is I think Monday afternoon when they will do another ultrasound of the liver to see if everything is still looking good.

We have made our flight arrangements, and we are set to come home in to Eugene on United via Denver. We should land about 2:00. Hope the boys are ready for the new regimen of sanitation we will be going through at the house. Actually, it shouldn't be all that bad. Mostly having to be conscious about food preparation and clean up around the kitchen. I can be around people without any concerns other than around those with colds or a bug. Have to really watch that the first several months.

No real problems from this end other then some continued light-headeness which is apparently do to low blood pressure. They want me eating salty things with lots of fluids to bring that back up. Between that and all of the fats Jeanine is trying to pour into me I will probably have a heart attack! Walking around as much as I can, but legs are still feeling pretty weak .

I want to let everyone know that I/we really look forward to seeing you. Please feel free to call and/or come by. If it gets to be too much, or if I get to tired, I will let you know. Flowers are still probably not a good idea for us to have around the house for a few weeks. Love, Rick

We're Coming Home!

Barring something totally unforeseen, we will be home July 3oth in time to celebrate our son Jake's  19th birthday!  I have a few final tests that they will do Monday and Tuesday before I am released, but they do not anticipate any problems and told us to make our plans to go home.  Everything about the liver has checked out perfectly to this point, and it seems to be functioning as well as could be hoped.

It has been such a whirlwind, and the news came as a pleasant surprise, and is really emotional for both of us.  Can't wait to see everyone, but maybe just not everyone on the first day.  Thanks again to everyone for their love, prayers and support, we could not have done it without you.  Love, Rick and Jeanine

Continuing our journey

Pretty quiet the last few days.  Looking to get some progress reports on Thursday when I meet with my transplant coordinator.  Spent yesterday on the road exploring a bit with my friend Baine Palmer and Jeanine.  Went and had lunch at a little Amish community called Harmony, and then explored Lanesboro which is a small community that is a starting point for local biking, hiking and kayaking.  It was nice to get out for the day, but I got a little tired.

We were serenaded last night by some local Mennonites who came in and sang hymns for us here at the Gift of Life House.  It was very calming and soothing.  Then we were treated to an incredible thunder and lightning storm later in the evening.  It was right on top of us, and I was sure we would lose power but we didn't.

Overall, I am feeling pretty well as far as the surgery goes.  No pain, fever or complications.  Am having the continuing numbness, tingling and weakness in the legs which is what we are hoping will eventually go away as a result of the surgery.  Starting to turn our thoughts towards returning home.  It is scary in a way, because Mayo is such a nice safety net next door in case of any problems.  Starting to think about and embrace the transitions we will face when we get back.  Looking forward to seeing everyone soon.  Love,  Rick

Continued good news

Met with the Dr and reviewed my latest blood tests.  Everything is still looking really good.  Taking me off of another medication, so I'm starting to whittle those down a little.  Weight and appetite still down, so I am trying to work on that.  Jeanine is feeding me lots of good fattening foods, or at least trying to the best she can.  Meet with the drs later in the week and may, hopefully, get some kind of estimated return date.   

Many of the people here where we are staying have already been here for 2-3 months, so we are feeling relatively fortunate.  We miss everyone, having chosen great medical care in Minnesota over the proximity of doing this back home, but we have no regrets with our choice.  Looking forward to seeing everyone soon.  Love, Rick

So we re starting to settle into a routine at our new home, The Gift of Life House.  Medication, lots of it, everyday at 8 and 8.  Breakfast is usually busy with lots of early appointments for most of the patients.  Communal kitchen with everyone sharing in the work and clean up.  Each responsible for their own meals and clean up.  

Jeanine usually goes for a morning walk and I try to go down and work out for about 1/2 hour on the stairs.  The medications have me a little light-headed, but I am trying to get up and walk as much as possible.  There is almost always someone around if you want to talk, and if not there are a number of quiet areas for sitting, reading and meditating.  There are 3-4 tv rooms where someone is usually hanging out.  I am down several pounds as expected, so trying my best to keep up my weight and my fluids.

Mid-day we usually go for a walk, or rather, Jeanine pushes me around in a wheelchair.  Late afternoon and evening is very active around the kitchen, and you can usually run into just about everyone during that time.  After dinner there is a great porch with about 12 rocking chairs where people sit, talk, watch the fireflies and the sunset. We usually try to watch a movie later at night.  Hoping to maybe rent a car and get out and explore  little more next week.  My friend Dale is coming on Wednesday and will have a car, and he is always a good guide.

Not much testing next week.  Blood draw every other day or so.  Stitches should come out in about 9 days, and they will begin tapering some of my medications then too if all is still going well.  With luck, we look to be home the first week or so in August.

I really appreciate all of the cards, emails, texts, and facebook contact from everyone.  Your love and prayers are being received, and I look forward to seeing everyone soon.  Love, Rick  

Mayo Clinic

Gonda Building Atrium

Rob and Rick

Donor plate and Jeanine, Diane, and Gail

So finishing my second day out of the hospital. Had a biopsy of the new liver today and everything looks good. No sign of rejection, and no infections of any type. The drs are very encouraging, and it appears I have cleared the initial hurdles.

Staying at the transplant house is an incredibly uplifting experience. It house 44 patients with their caretakers. It is dorm style, communal living. Everyone is here for similar reasons, from transplants of heart, liver and kidneys, to myeloma patients harvesting their own stem cells to battle their cancer. As a result, there is an instant bonding with all the people you meet. People want and need to share their story and experience, and want to support yours as well. Rides are offered, meals shared, and there are common areas to read, talk or watch tv together. It has really lifted my spirits, and is a steal at $25 per night! What a gift. Folks are from all over the country, and most here for several weeks like us, so friendships are plentiful. Then of course you run into them at various times of the day at different clinic appointments.

Can't thanks everyone enough for their support. I am truly starting to realize and appreciate this miraculous gift I have been given. Love to all, Rick

Ready for blood draw at 6:30 a.m.

"Ricky" was called in for a blood draw this morning. Still looking good. Shortly after this appointment he went in for his first biopsy to make sure his liver is behaving well. His first night at "The Gift of Life" transplant house went well. Jeanine's sisters, Gail and Diane, are in town until Friday. Rob, get ready to hike with the Miesen women!  Jeanine, Gail, and Diane

Last night at the hospital! Moving on Monday.

This is Rick's last night at the hospital. He'll move on Monday to the Gift of Life Transplant House. Ed is going back to Seattle, and our sister, Diane, is coming on Monday. Rob Baron is also coming so that he can come in second place playing Scrabble.

Ed

Walking in the early morning along the River

Jeanine and Ed have been walking for exercise along the many miles of paths in Rochester.

Rick and Jeanine on a Walk in the Hallway

Rick was out walking when we went to visit this morning. When he came back, we wheeled him inside and outside and went through the "subway" underground walkways below the clinic buildings.

Jeanine and Ed

This is not where we live.

The Plummer Mansion is near our home while we're here. It was built by one of the main doctors in the early days of The Mayo Clinic. Jeanine and Ed take long walks every day and go by this house. It's in the "Pill Hill" neighborhood. The area looks like Portland's East Moreland, Eugene's University Street and The Pittock Mansion. Cool.

Jeanine and Ed

Thanks to all for their comments and texts. I've been much more active today. Feeling better, but not much appetitie do to the amyloid. But the Dr.s say I am doing great, and I am further along than I would have imagined. My friend Bill Combs was out for a visit last night and that really lifted my spirits. My brother-inlaw Ed has been a godsend to Jeanine and I, and we would not be doing nearly as well without him here with us. I am feeling all of the energy being sent my way, and know that it has been instrumental in this whole process. My love and thanks to all, Rick

Rick on Thursday July 9th

Bill Combs visited us today. Thanks, Bill.

Gift of Life Transplant House: Our Home

We are fortunate to be with a community of transplant patients. There are 42 rooms. This is the old portion that was originally a physician's home. It's quiet and clean.

Jeanine

There's No Place Like Mayo!

Certain cities are known for greatness. New York: Broadway Plays. Vegas: Gambling. Paris: Romance. Rochester, Minnesota is home to the world's best medical center, Mayo Clinic.

We spent 14 months visiting several doctors and undergoing many tests in Oregon, but still did not know the cause of his symptoms. Then came Mayo Clinic.

In December of 2008, our dear brother-in-law, Dr. Dave Dedrick, became our primary doctor. Prior to this, we had no advocate. He sent us to The Mayo Clinic and in four days, Rick had a diagnosis that made sense. Additionally, Rick was immediately placed on the liver transplant list. It was expected that the wait would be 6-8 months. In total, we waited only 4 months. Mayo Clinic was the answer.

We have been so impressed by the efficient, passionate, and professional service of the Mayo Clinic staff. Throughout the experience, we knew that we had arrived in the world's best city for Rick's medical care.

There is no place like Mayo. There is no place like Mayo. There is no place like Mayo...

Jeanine

No, It's Not From Drinking.

All: Rick told us it's OK to post a message about his disease because some of you haven't heard the story.

Amyloidosis is a rare and potentially fatal disease that occurs when substances called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ.

Amyloidosis can affect different organs in different people, and there are many types of amyloid. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract.

The exact cause of amyloidosis is unknown, and there's no cure for amyloidosis. However, therapies are available to help manage the symptoms and limit the production of amyloid protein.

In Rick's case, his grandfather and great aunt died from familia amyloidosis (hereditary type). Rick's diagnosis was difficult because he has a rare genetic form that is shared by only one other human, in China. The recommended therapy for Rick was to replace his liver to stop production of the protein. It is hoped that this will provide relief from pain, numbness, and burning in his legs and feet. We are also hoping for recovery of damaged nerves.

More information at: http://www.mayoclinic.com/health/amyloidosis/DS00431

Jeanine and Ed

Rick and Jeanine at bedside on the day of surgery. As of Wednesday, about half of the IV tubes were removed. It's nice to see the smiles.

Old Lady Found in Rocker on Porch...

This is the back porch of the Gift of Life Transplant House, where we are staying for a month.

Nurse Says Shh...

Ed and Jeanine have been touring the campus of the Mayo complex and thought that this photo was cute. It was in the Plummer Building Mayo Historical Office.

Contact Us

Rick and Jeanine Harder
Care of: Gift of Life Transplant House
705 2nd Street SW
Rochester, MN 55902

(NO FLOWERS, Just Mail, Please)

Jeanine Cell/Text 541-914-7135 Email JeanineHarder@yahoo.com

Rick Cell/Text 541-913-1335 Email RHarder@hwbm.net

Message from Jeanine: Rick received the call at 6:00AM on Monday July 6th to fly to Rochester, MN for the liver transplant. We were very happy to learn that we were at the top of the list 1.5 months earlier than expected!

Two hours later, Rick was on a flight and 18 hours later, he began the transplant operation. Rick also donated his liver to a recipient- "the domino effect." I followed Rick on a separate flight and was able to visit with him prior to the procedure. Also, my brother Ed flew out to stay for a week with us.

The 8-hour operation was a success and the doctors are monitoring his condition to make sure that his body accepts the new 40-year old liver. Dr. Scanlon told us this morning, "Congratulations on receiving the new liver. Everything's going great."

Rick should be out of the Intensive Care Unit by the end of today. He's a bit tired and sore, but that's normal. Rick won't be on his cell or the computer for some time, but you can contact Jeanine at JeanineHarder@yahoo.com or by texting her at 541-914-7135. You can also try Ed Miesen at EdMiesen@aol.com or text him at 206-325-2912.

Everyone who's prayed and sent positive thoughts to us has made a big difference. We really feel your love and support. Thank you so much.

June 28, 2009

For those of you who don't know, I have been diagnosed with familial amyloidosis. It is an inherited disease caused by a gene mutation which results in a misfolding of the transthyretin proteins produced by my liver. As a result of the mutation, my body is unable to rid itself of the build up of a plaque formed by these proteins called amyloid.  Amyloid tends to gravitate to, attach, and then eventually destroy organs in a persons body. In my case most of the damage is being done to the nervous system and it is starting to involve my heart. I have numerous symptoms that have developed, most notably my impaired ability to walk, digestion problems and muscle deterioration.   If it goes unchecked it is usually fatal within 7-10 years of symptom onset. My symptoms appear to have started in 2007. The only current treatment to help stop or slow its progression is liver transplant. I am listed for and currently awaiting transplant at the Mayo Clinic in Rochester, Minnesota.

This will be my outlet for letting people know how I am doing after I receive my upcoming, planned liver transplant. For all of my friends and family who read this, thank you for your love and support. Once I have the surgery I will remain in Minnesota for about one month. They won't let me have any flowers in my room, but cards, letters, phone calls, prayers, good wishes, emails and texts will be greatly appreciated. I am unfamiliar with what to expect in my recovery, so I think from here on Jeanine will be in charge of the blog for the next few entries. Love to all, Rick