April 28, 2012: Day 248 after transplant

Progress is slower than we had hoped, but it is progress. On Tuesday there will be a group care meeting, so by then we should have a better idea of when Ron will be discharged from the Heartland Health Care Center to our Ann Arbor appointment. It would not be safe yet for him to come back to the apartment. He gets 2-3 hours of physical therapy here each day, so actually, it will be better for him to stay longer. He does not have any appointments at U of M next week, so he can concentrate on getting better here.

April 23, 2012: Day 243 after transplant

Grinding. It seems that the order for progress is physical therapy. Ron has shown improvement since his admittance at Heartland Health Care Center. Although his blood pressure readings continue to drop significantly when standing, there is improvement, and a new medication is not the answer. Building muscle is the answer. Ron will be staying here at least two more weeks, so he can have intensive physical therapy. His bloodwork is okay by transplant standards. The platelets will be the last to recover.
Grinding.

New Week: April 23, 2012

Today is doctor day. We will leave for the BMT Clinic in Mott Hospital at about 1:00. Today Ron sees his primary doc, Dr. Magenau. This includes PA Tim Higgins, and nurse Maria. On Wednesday he will see his symptom management doc, Dr. Urba. His therapy will continue here at Heartland Health Care Center for about two more weeks. The session that he misses this afternoon will be made up on the weekend. He will have one session this morning before lunch. His blood pressure drops have improved but still a problem. He is definitely stronger, and we are anxious to see what his bloodwork from this morning shows.
Overall, the food is quite good here. We only had to make runs twice to buy something else. Yesterday his weight was the same as 2 weeks ago. 151.2 lbs. We are happy when it stays out of the 140s.
Thanks for your continued support in so many ways: checking the blog, sending positive thoughts and prayers our way, a note to Ron, a newspaper clipping, a text or email, etc. Yes, he is still grinding. We still believe there will be a good outcome after this long recovery.
Love, Ron & Jan

Therapy Update: April 20, 2012

The amount of therapy Ron receives at Heartland is excellent. The same two therapists work with him each day. Except for the first weekend (Easter weekend), we do things we have learned and he walks on the weekend to at least maintain his level of mobility. The weekend is also a time to recuperate after a full week of hard work. His fall was 3 weeks ago...one week in the hospital and 2 weeks of rehabilitation behind him and probably 2 more weeks at Heartland Health Care Center. If he stays stable medically too, we should be able to go home by mid May. My new target date: May 10.

A New Week: Monday, April 16, 2012

We have lived in Ann Arbor for 8 months now, and it is unlikely that we will be moving home in April. Ron's blood pressure's variance is not as dramatic as it was, and we can see progress in other ways, too, but more work is ahead of him before he can become independent in doing his exercise. He will have clinic check-ups next week, but this week the concentration is on his therapy.
All four kids' visits over the past three weeks were a boost for me, and it is important to them to see how their Dad is doing. This rehab center is 15 years old and has been kept quite nice. The grounds and landscaping are pretty, and spring is definitely in full swing. Once again our yard at home is being mowed by brother- in- law, George. I hope that I will be able to take that over before too many more weeks. I can hardly wait to put my energy into gardening and yard work. I am staying patient though, and we will wait until it is safe to go home.

10th day of rehab: Heartland of Ann Arbor

Rehabilitation is helping Ron. He is motivated and has the desire to get better. Although his blood pressures continue to vary significantly from lying down to standing, it is not as large a difference. They continue to tell us as he gains muscle especially in his legs, his muscle contractions when standing and walking will constrict the blood vessels in his legs and stabilize the BP.
It has been comforting and helpful to have all of the kids visiting over the last 3 weeks. Now the siblings will be visiting us as we move ahead. I haven't asked, but Ron will probably have 2 more weeks in rehabilitation. The main goals are becoming independent in exercise and stabilizing blood pressure.
Your continued support in many ways has been so meaningful to us. Ron usually reads his texts on his phone but has not begun to return texts yet. He is being weaned off a medication that causes tremors, and the therapist is working on hand strength. He cannot press the buttons on the remote control to change channels and volume freely, and it is physically difficult for him to text and write. I do read his texts to him and also the emails that have been sent to my address: janhover46@gmail.com. Again thanks for your continued support.
Love, Ron & Jan

Heartland Health Care Center: Ann Arbor, MI

Monday-Tuesday, April 9-10, 2012

Snow fell today on the lovely pink dogwood blossoms. It was breezy and spit snow for most of the day. Ron had had a low grade fever for a couple days, so they are not going to give him another roommate. It makes a HUGE difference to be able to have the divider curtains pulled back and the window in view. The room looks at least 3x larger.
The doctor's appointment went well yesterday. I had to get up early to get myself ready, drive here, get Ron ready, and be at the hospital by 8:00. His bloodwork was good, no red flags, or levels lower than what they had expected. They took his bloood pressure lying, sitting, and standing and saw firsthand how it drops dramatically when on his feet. The therapy here at Heartland Health Care Center will help build muscle to counteract this. It won't happen overnight, but he seems to slowly be gaining a little strength. The plan is for them to work their magic here and not go back to the clinic for two weeks. He has about 2.5 hours of therapy spread out through the day. His U of M clinic appointments have been rescheduled, so he doesn't have to leave here the rest of this week or next.

From Journey to Saga...

As this ride continues, I think it is appropriate to call it a saga. Ron's roomie has had to return to the hospital, so now Ron is in a room alone, and I have pulled back the curtain so we can see the pink dogwoods in bloom outside the window. Happy Easter!
Ron's side of the room has the advantage of being next to the bathroom, but it truly is close to the size of our Ford F-150 truck. There is a nice wingback chair for me, and I also sit on his walker. He has a very small TV on a retractable arm. The staff here has been very caring and kind.
Tomorrow I will take Ron for a blood draw and doc appt at the Bone Marrow Transplant Clinic in new Mott Hospital...our usual destination for appointments. He will see his BMT doc, Dr. Mag, who has been great. I hope we are back by noon for lunch here and physical therapy in the afternoon. Niccole and Cale are coming tomorrow. Then Matt is coming later in the week. Andrew was here 2 weeks ago.
I hope so much that we will be able to go home May 1. There are many medical issues that have been worked through or resolved. He has not had high dose steroids for some time now, the BK and CMV viruses are gone, his electrolytes are acceptable, as are his other bloodcounts. His blood cells made by the new bone marrow run low, but he does not need transfusions. His skin does not have active graft versus host disease, and although he has GVHD in his mouth, it has not caused lesions, just dry mouth. Now he needs to rebuild muscle strength, so his blood pressures stay more stable in different positions. (orthostatic hypotension) He was so weak, that he could not pull himself higher in the bed but needed to be moved up in his bed using a loose sheet under him. He could not sit for very long on the edge of the bed without tipping over, and he continues to not be able to walk without assistance even when using the walker, so there is a good deal of therapy that needs to be done. It feels like we are in the right place.

April 5-6, 2012

I have to admit that taking Ron to a rehabilitation center was a culture shock for me. Before his arrival, I had focused on the benefit that I knew he would receive with intense therapy, and I had not prepared myself for what Heartland and the other patients would look like when we arrived. Then he doesn't have a private room like he has been used to at U of M. That being said, our adjustment followed rather quickly with the warm, caring staff here. I just have to initiate more information-sharing at Heartland where at the hospital, that was done automatically by the nurses, PAs, NPs, and docs.
Ron had 2.5 hours of therapy yesterday. We can already see some improvement!

Heartland Health Care Center: April 3-4

I can't imagine how much more difficult it would be to communicate with everyone if we didn't have the IPad. I am grateful for it everyday. We have a Verizon 5-spot for our wifi service. The hospital and Heartland both have in-house wifi, but our own Verizon works consistently better. It is about the size of a hand-warmer so very easy to carry with us.
My sister, Anne, and George came to Ann Arbor to bring our mail from home, so they stayed to help move Ron to Heartland. It seemed overwhelming to both of us, and I felt like I was was moving him into a nursing home. I had to ask to have a review of meds from the nurse and also requested to talk to the director of this unit because I had many questions, and they did not initiate any "orientation" but have responded very quickly when I request something, so that has just been part of the learning curve. Now today at the top of my agenda is to make sure that the meds are totally correct in every way. I can assume that responsibility if there are any issues. I plan to stay all day, maybe going out for short periods of time, and I am not allowed to spend the night. I feel so much better about this place than yesterday when he first got here.
Ron is not in a private room, so I have started to look into that possibility. It is a nice family with the roomie. Coincidentally, their son who is here has sons named Joey and Jack...much older though than our Joey and Jack.
Ron's mailing address will continue to be our apartment address:
1455 Oak Valley Drive. Apt. 103
Ann Arbor, MI. 48108

Tuesday, April 3, 2012

The move to Heartland Health Care Center has not happened yet. Not all of the Tricare insurance paperwork is yet in order, so we will spend another night on 8B in U of M Hospital. I can't imagine a unit feeling more like family than 8B does. Many RNs have come to see us, and two brought wedding and baby pictures. The one who married in the fall had told us that she and her then fiancé thought they would travel in Michigan north of here for their honeymoon, so last July out came the maps, and Ron planned the itinerary for their trip. We love northern Michigan (lower peninsula) in the fall, especially the Leelanau area...the pinkie finger area for those of you who think of the lower peninsula of Michigan as the shape of a mitten. It will be special to make that trip again maybe Fall 2012.
We are hanging out at the hospital until the move. It would not be safe for me to manage Ron's care at the apartment. He is way too shaky on his feet and needs help when moving in the bed. He continues to receive the same amount of fluids IV as I was giving him at the apartment. There won't be any med changes until rehab is underway and his progress can be observed. Ready to get the show on the road!!!
I am thinking new target date for the move home: May 1.
Love, Ron & Jan

Sunday, April 1, 2012

Can't help but think about the ambulance ride to U of M Hospital from Coldwater Hospital 2 years ago when Ron was so sick with infections as a result of the AML. I remember asking our local doc on March 31, "Do you mean that he is going to have to spend the night in the hospital?". So much has happens in two years with 9 months of remission sandwiched in the middle.
Ron's care and doctor support has not missed a beat over the weekend. At this point they have decided not to add any meds and not to stop any meds and concentrate on physical therapy to treat the orthostatic BP. This intense physical therapy will be in a rehabilitation facility. His symptoms have remained nearly the same since his hospitalization.
I know that we will learn a lot more about rehab tomorrow. It will take place in Ann Arbor and the doc requested that I stay with him. Ron is on board with all of this. In spite of everything he has had to endure, he continues to want to get better.
Love you and your support, prayers, positive thoughts, and humor.
Ron & Jan