Home Sweet Home

It is great being back home at Gilead Lake. Ron continues to cope with physical and emotional issues but I think he is doing well. He is too rough on himself at times. When the doctor took him off his immunosuppressant pills, we realized how much it had affected his persona. He is much more himself now. Moving home-home, both packing and unpacking, has been an extended work in progress. Of course, there is no rush, but I am anxious to have everything put away. I have done a little gardening, but the temperature was near 100 degrees today! Getting past the fatigue caused by the last hospitalization, the last series of doctor appointments, and the move itself has been a priority. Niccole came home from Virginia to spend the weekend with us. She did yard work on the beach area, helped unload the vehicles,and gave us moral support. She is planning to spend 6 weeks again with us this summer. Ron has had one fall since we came home...so glad she was here to help me get him back on his feet. He jarred himself and bruised his hand. An injury caused by a fall is a top concern. When he doesn't follow the safety precautions is really the only time that I get mad at him. Love to all, Jan

Surreal!! Going Home on Day #275 after Transplant!

Most things from our apartment were taken to Gilead Lake on Wednesday by sister, Anne and George. We didn't even see them because Ron had three doctor appointments. The truck was fully loaded, and a hallway of boxes etc. was loaded into their car. (by them). My mission is to fit everything else into the Edge tonight and tomorrow morning. I can do it! Wednesday's appointments were exhausting as we confronted emotional issues, symptom management, and the news that the loss of vision in his left eye is permanent. Ron also had his full pulmonary function evaluation but we don't know the results yet. So, all of this rolled into a long day 8:30-3:30 at the hospital. Today he only had physical therapy at our apartment. His physical progress is moving along well now. He walks unaided in the apartment, and mostly uses the walker outside but is transitioning to a cane. We will be home for 10 days before return appointments, so we are planning to see if progress can continue without a physical therapist...just using guide sheets given to us. A therapist could be prescribed again at the June 4 appointment. We are optimistic and so happy tobe moving home-home to Gilead Lake. Love to all of you for sharing this two year journey with us. We never felt alone, and whether you have been a reader of the blog,or one who sent cards or notes or prayers or good wishes or cookies or flowers or food or texts or emails,or inquired about our well-being to our family members, etc., etc., we are thankful and indebted to you for making a difference.

Moving out of apartment Friday!!

The week is underway. Today we had a long appointment with Ron's Bone marrow transplant doctor and physician's assistant. We had many questions about his last hospitalization, changes in medications, and the loss of vision in his left eye. The plan is in place to go home on Friday. That would be home-home to Gilead Lake and permanent. Of course, there will be frequent trips back to Ann Arbor. Remaining this week are 3 doctor appointments (symptom management, pulmonary function, and opthamologist)as well as 3 physical therapy sessions. Last weekend was beautiful at the lake. We ate on the deck and mostly just enjoyed being there. Family is taking good care of us in many ways...very nice to have the yard work done and house cleaned, so we could just relax as much as we wanted. There was nothing that had to be done, but we did pick up some flowers in Bronson and took care of a couple minor projects. We can hardly wait to get home on Friday. More later, love to all--Ron & Jan

Continuing to do well...

After the occupational therapist made her visit, she signed off on us needing any more adaptive equipment, education in safety issues, or care-giving. So Ron will only have a physical therapist during the remainder of our time in the apartment. He is taking responsibility to exercise on non-therapy days, and we walked even further today. I can now see a little muscle definition in his calves and his skin is beginning to tone. His legs were/are so thin. During Ron's last hospitalization, they took him off two more medications, and that seemed to help clear his thinking quite a bit. One was his med that suppresses the conflict between his transplant cells and his own cells. Ron continues to show evidence of graft versus host disease of his skin. There are ointments to treat cGVHD of the skin rather than pills, so that is what is going on now. Some of his skin is reddened like a sunburn, and there is slight rash a couple places. He seems much more like his old self; the words feisty and cranky have even come to mind...much better than docile and lethargic. We are going home for the weekend, returning to AA for appointments everyday of the following week and hope to get the clearance to make our permanent move Memorial Day weekend. Holding our breath, Ron & Jan

Summer Weather in Ann Arbor

Back at the end of March I had posted this view from our apartment in Ann Arbor during fall, winter, and spring. Here is a summer view. Ron is continuing to recover well from his UTI and staph infection in his blood. He is on a course of an oral antibiotic for 14 days. Amazingly, he never had a fever with these infections but became extremely weak, confused, and lethargic. At the same time he was losing the vision in his left eye which was probably unrelated to the infections and a separate event due to low blood pressure perhaps as he slept, causing a lack of oxygen to the optic nerve. We will never know for sure. At times it is a gray disc blocking vision in most of the eye but being able to see a little around the edges or see outlines of people. Usually, he only sees black in that eye. He was not able to see the large E on the eye chart when the opthamalogist examined his eyes. We continue to be on track to go home-home in 2 weeks. We have adjusted the actual day of departure slightly because the physical therapist made her first at home visit yesterday, and she will work with him 2 weeks here. Because he is also going to have occupational therapy which needs to be in the apartment, all of his therapy will be in the apartment instead of going to an out patient facility. (insurance issue) That is okay...another way to avoid germs. Now the plan is to move home on Friday of Memorial Day weekend. Therapy will continue when we are at Gilead Lake. Ron is walking with his walker and can take some steps without it, but the therapist told him not to do that yet to ensure that he would not have another fall. When we walk outside, he uses the walker which has a seat, so he can sit and rest if needed. We are getting there! Love, Ron and Jan

Two more weeks in Ann Arbor??

Things are going well at the apartment. Both of us have been taking naps and enjoying relaxing on our own schedule. (within reason!!). It is also good to be catching up on household tasks and starting to organize our belongings for the move home. Ron did a great job of exercising this morning, and we went on a walk outside early this evening. Both occupational and physical therapists will come to the apartment Monday, May 14 to evaluate and work with Ron-- probably for about two weeks. Then we plan to move home-home, and he will continue to have out patient therapy in Coldwater. This all seems very probable today. He also has several doctor appointments during the week of May 21 and follow-up appointments are starting to be scheduled for the months to follow. We are planning a test run to Gilead Lake the weekend of May 18-20, returning for therapy and appointments starting May 21. Part of Ron's therapy will be learning adaptations necessary due to the loss of vision in his left eye. His 5 weeks in Heartland Rehab did significantly strengthen his muscles. I am guardedly optimistic that he has finally turned the corner in his recovery. Love to all, Ron & Jan

An Amazing Turn-Around!

Our hospital room belongings are packed, and we are waiting for Ron's IV antibiotics to finish. He is going to go on pill form antibiotics and have both IV lines removed. His Neostar port was removed yesterday. He is on less medications overall and going home to the apartment with me. PT and OT will start in the apartment on Monday. We are back on track to move home-home by the end of the month. Unbelievable!! Thanks for your prayers, good wishes,and positive thoughts that you sent our way. Love, Ron & Jan

Getting Better!!

Ron has improved in amazing fashion since Monday and Tuesday's events. The primary cause of his physical changes as well as the increased mental confusion seems to have been more related to his infections than a neurological event. He is now able to take short walks in the hallway with his walker. Monday and Tuesday it took two people to help him sit up in the bed, to stand, and to transfer him to a wheelchair. He had to be moved guerny to bed for various tests by 4 people using a draw sheet under him. His balance and coordination were severly affected. He was only minimally communicative and very confused. I have been sleeping in his hospital room, and when I woke up Wednesday morning and turned to look at him, he said, "good morning, Teach." in a strong voice. I couldn't believe it. It was like someone lifted a curtain...not to say that all confusion is gone, but he is amazingly better cognitively and physically. The physical therapists and occupational therapists who have evaluated him here and worked with him have gone from believing that he would require intensive acute therapy in a hospitalized setting to thinking we will go home to our AA apartment, and he will have therapy at an U of M out-patient facility probably 3x a week. He will also have occupational therapy in the apartment, so both of us can learn coping skills with his vision loss in his left eye. The same therapy will then continue at home-home by the end of the month. (to simplify things, we call the AA apartment home and call Gilead Lake home-home) battery low on iPad; will post and close, so I can get this additional info out. Love to all, Jan. (Ron is asking me questions about the Tigers!!)

A Change of Plans

Things have changed again. We have had a rough couple of days. Ron did come with me to the apartment all day Sunday, but he was weaker (used a wheelchair instead of walker) and did not walk or exercise while there. Monday morning he had his regular appointment with Dr. Mag at the BMT Clinic. He was noticeably weaker Monday morning and less communicative. On the way to the doctor he told me that the vision in his left eye had started to gray on Sunday. At his appointment he did not talk much, and had great difficulty standing even with support. The doc thought he possibly was developing a cataract and had Parkinson's characteristics that needed to be investigated. I had needed help getting him out of the car into a wheelchair. Dr. Mag arranged an MRI and appointment with neurology for later in the week. At checkout he had forgotten that he had even seen Dr. mag. We returned to Heartland, and he had OT and PT in the afternoon. While eating dinner I asked him if his eye had improved or was the same. He covered his right eye and told me everything was black. I went immediately to his nurse who called his Heartland doc, and she (the doc who called me immediately) told me that he needed to go immediately to the ER via ambulance. This progression of events occurred very quickly. It was about 7:00 PM. Ron had quick, thorough, and lengthy care from a private room in the ER. ...bloodtests, exams, neurology team evaluation, opthamalogist exam, ER doc and nurses, CT scan and then MRI...tests wrapped up about 4 AM. He was admitted, and transferred to the BMT hospital unit on seventh floor in Mott. ..exams and many more tests ordered by various consulting specialists during Tuesday and Wednesday have led to the following information. He has several infections including bladder infection, his central line/ port is infected and will come out, and bacterial infections in his blood --staph being one. He is now on powerful antibodies. Most sadly, the loss of vision in his left eye is likely permanent. Cale came to be with us all day Tuesday as the medical specialists had continued to sort through their findings and begin to arrive at partial answers as to what was happening to Ron. Physically, he was markedly stronger and had better balance on Tuesday. His voice was stronger. He was more talkative and although confusion continued to be an issue, he had improved. I will update later in the day after we know more. Please send positive thoughts and prayers our way. Love, Jan

I love the new car and am starting to learn its computer features. Ron and I looked at the instructional DVD this morning; now he is napping until lunch. The weekend is his time to catch up physically from all of the therapy he has done during the week. Mainly he will just walk some and do some free weights with me today and tomorrow. I am going to take him to the apartment Sunday for several hours; he can get a sense of leaving rehab, and I can clean the apartment. With leaving early in the morning and returning late each day, I have some catching up to do. Ron continues to make slow, steady progress. In addition to physical and OT therapies, we are working on some memory activities. He feels like his short term memory is not what it used to be. You also lose a reliable sense of time and date when in rehab. Heartland is a good rehab center; everyone is so caring, friendly, and we have now established rapport with several nurses and aides. Ron's BMT doctor and I communicate through email. He has an appointment with him Monday, May 7. Following is our tentative schedule for May: May 6- visit to our Ann Arbor apartment May 7- appointment with Dr. Mag at Mott Hospital- BMT Clinic May 8- update status with Heartland Rehab staff May 9-15 continue rehabilitation at Heartland May 15-16 discharge to apartment in AA May 17-20 trip to Gilead Lake for a long weekend May 20- return to AA apartment in the late afternoon; finish packing everything by May 23 May 21- appointment with Dr. Mag May 23- Symptom Management Clinic appointment, full pulmonary function test, eye appointment; move to Gilead Lake late afternoon May 24- Ron- teeth cleaning; dental appt. in Coldwater with regular dentist I hope this plan works!!! Love, Ron & Jan

May 1, 2012: Heartland Health Care Center

Ron has now been living at a rehabilitation center for almost four weeks, and after our care conference today, he will be staying at least two more weeks. The goals are to get him to a point that he can exercise independently with support from an in-home therapist and also that he is mobile enough that we can manage in the apartment and at home on our own. He is improving. He has gained some weight and his blood pressure is more stable when he sits and stands. His bloodwork remains mostly stable with some improvements. He does have some days that are better than others in terms of strength and clear headedness. We continue to support the Ann Arbor area economy. We bought a Ford Edge Select Ecoboost this week. My Explorer is a 2003, and our Ford XLT F150 is not easy for Ron to get in and out of...sounded like a good reason to buy a new car to me!! When I figure out a couple technology glitches that I am facing with my laptop, I will post a picture. I have a lot to learn with My Touch Ford, Sirius, something sync etc. I enjoy learning new technology. So here we are continuing to live in AA. It will soon be 9 months...more than that when we get home if the next 2-3 weeks go well. Thanks for your support as we continue on this lengthy journey. Beating acute myeloid leukemia has been a challenge, but Ron continues to be in remission. There was no way to even begin to imagine all that he would have to endure. He is amazingly accepting of his circumstances. Love to all, Ron & Jan