Friday, July 31, 2009

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  Hey, gimme a break, I know YOU all have at least one outdated item in your pantry.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.

Monday, July 27, 2009

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

Saturday, July 25, 2009

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

Thursday, July 23, 2009

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

Wednesday, July 22, 2009

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

Monday, July 20, 2009

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

Saturday, July 18, 2009

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  

Wednesday, July 15, 2009

Tuesday, July 14, 2009

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

Sunday, July 12, 2009

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.

Saturday, July 11, 2009

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

Friday, July 10, 2009

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

Thursday, July 9, 2009

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

Wednesday, July 8, 2009

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.