A Few More....

The first picture is our Halloween pic! It was taken in a restaurant in Port Clinton on one of our "Fall Drives". That's a creepy character behind us. Ron took the picture of the red tree. After all the miles we have put on the car driving, he took that one from his window in the car while in Cale's driveway.
The medication picture shows what I do when setting up his pill cases. At the same time, I take inventory and figure out what I need to request refills for from the online pharmacy, or if no refills left, I can message the bone marrow transplant clinic, and they email a new script to our online pharmacy. I do all of this online, and Express Scripts allows me to have refills well in advance, so there is never an emergency because we're out of something. Ron's medications have been the same for several months. In addition to pills, he has 3 different inhalers and oxygen supplies that need to be managed.

Happy Halloween! 🎃

Ron and I have both loved fall for many reasons. This year has been different with warmer than usual days and no trip to northern Michigan. We have been taking drives to visit places closer to our homes, and we choose days that are mostly sunny, so the fall colors are shown off. Both of us continue to enjoy taking pictures of the sights we visit. I will post a few soon. I know the decision to not take overnight trips is the best for us. (Except between Gilead Lake and Bowling Green.)
I am still in the process of trying to get a portable oxygen concentrator for Ron. It should make our outings easier.
Since I started this entry, the respiratory tech has come and evaluated Ron's oxygen needs again. A portable concentrator is probably not the way to go due to the level of oxygen he needs. The batteries would not last long, and I would be looking for a place to plug it in frequently. Also, he would need a larger one, so I would still have a machine on wheels to pull around. The other option is a smart dose valve which is not a constant flow like he has now. With it, tanks last a lot longer, and we could have smaller tanks for outings. The valve monitors his breathing and adjusts automatically as his requirement varies.

Change of Plans

As difficult as it was for me to admit, we are not able to take our Michigan fall colors or Thanksgiving trip to Virginia. The oxygen is the deal-breaker. The logistics of transporting oxygen tanks, the oxygen concentrator, and the worry of a possible breathing complication were too much for me to deal with. I really hated to admit it! At this point though, the relief after making this decision is much greater than the disappointment. Ron is not able to help me with organizing any of this, packing his clothes, preparing medications, getting in and out of the car independently, loading the car, etc. I am still up for day trips in the area, and the fall colors are beginning to arrive! We went to Shipshewana this week...mainly for lunch! I must say again how so many strangers step in and assist us when we are out. The goodness of people is abundant. Doorways are the most challenging obstructions!
So again we adjust as there is again a shift in what we are able to do. Although he was disappointed, Ron was accepting of these changes when I explained how difficult it was for me.
We now have our dock out of the water, and I have done some fall decorating and gardening. I have always loved this time of year. We plan to spend more of winter at the villa in Bowling Green this winter.
Love to all,
Ron & Jan

"This is my solemn vow."

...for better or worse, for richer or poorer, in sickness and in health, to love and to cherish all the days of my life. This is my solemn vow.
September 26, 1970

Lung Function Update

We have traveled to Ann Arbor (University of Michigan Hospitals) on 3 of the last 6 days. These trips were for scheduled appointments to have new eyedrops made from Ron's blood, Bone Marrow Transplant Clinic, blood work, Pulmonary Clinic, and an immunity infusion.
I had the most questions for his pulmonary doctor regarding his CT chest images, managing oxygen, the condition of his lungs, and medications to prevent another pneumonia. The pulmonary function test showed that Ron's lung function has diminished since February when this test was last given. His last pneumonia was in June and involved both lungs. His progressive lung damage is not reversible, so he will not recover enough to come off the oxygen. There are no medication changes because he is already maxed out on the quantity and dosage of medicines that treat his lung issues. (Antiviral, 3 antibiotics, antifungal, albuteral inhaler, Spiriva, Advair, and Singulair) Looking ahead, when Ron has an infection that flares in spite of the medications he takes, then he is hospitalized and given the big gun IV antibiotics. He has been hospitalized for pneumonia 8 times since his transplant. Each pneumonia reoccurrence does more damage, so his health declines with each hospitalization.
We would still like to go "Up North" to see fall colors and go to Virginia for Thanksgiving. The oxygen will be an issue. The pulmonary clinic is working on getting a portable oxygen concentrator for us through our insurance. Ron will have to be tested to see if his inhalations are now strong enough to trigger the puffs of oxygen. I'm still trying to find out if there's a constant flow portable device.
Ron's blood work was good; he always has some abnormalities but nothing was way off. His white cell count was the one most out of normal range, but the immunity infusion should help attack any infection...probably in his lungs. I was concerned with him going back to having an IV for his immunity infusion. (because he no longer has a central line) He said that he didn't even feel them put the IV in, and they had no problem finding a good vein.
Ron's next appointment with Dr. Mag is in December, and his next appointment with Dr. Pendelton (pulmonary) is in January. Hope things can stay status quo. He got his flu shot this week, too.

Happy Birthday Ron!

We have been celebrating Ron's birthday for awhile now. It started with cake and ice cream with Cale's family while we were still in Ohio. It ended today with a quiet day at home at the lake. Ron can feel overwhelmed with too much going on and does enjoy just his quiet, peaceful days. What a beautiful day it was just to spend some time out on the deck!

And so the 6th year begins

Five years ago Ron had his bone marrow transplant. He has never returned to good health, but as he says, "I am still here!" In the right hand index you can return to August 2011 and read about this process. A bone marrow transplant was the treatment after his relapse of acute myeloid leukemia. During May-July 2011, he had chemotherapy to bring him to a second remission in preparation for the bone marrow transplant. His chemo each month required a week in the hospital at U of M, followed by numerous platelet and red blood cell transfusions at our hospital back home.
After Ron's BMT we were not able to move home from Ann Arbor for over 9 months. His transplant has been complicated by chronic graft versus host disease which is basically his new bone marrow products attacking his body. For Ron the most serious damage has been to his lungs, resulting in 8 hospitalizations for pneumonia, and now he needs oxygen 24-7. As a nurse told me, he really is a miracle. Ron had returned to officiating high school basketball and running a 5K during his first remission. Acute leukemia is very aggressive. When Ron was diagnosed with his relapse in May 2011, he asked the doctor how long he would have with no treatment. The answer was that it could be as short as two weeks. Weeks.
So as with all anniversaries, reminiscing has been a big part of the past few days. We have no regrets. We enjoy life as it is.
Another celebration will be a part of next week. Ron's birthday is September 4, and he will be 68 years old. Happy Birthday Ron!!

Required Kleenex

Ron spilled a drink on his planner this evening. When I took it to the counter to dry it, I found the following index cards inside the cover. Evidently, he worked on this project while I was gone today, and his caregiver, Lois, stayed with him.
Note: I don't know what AOE is, and Blue H. is our kitty.

We went to Ann Arbor on Tuesday, and Ron had his central line removed. It was his 3rd one, and he had had this one 2 years and 4 months, so that is one less dressing change and also daily flushes that are off my Nurse Jan responsibilities. He had had this line so long because he had 153 ECP treatments from January 2013 to May 2016. He kept it for two more immunity infusions and also his June hospitalization. In the future he will require an IV for infusion treatments. He has 3 skin tears that have been healing for 2 months, so it won't be too much longer until he can take a shower without wrapping anything in a ziplock bag or saran wrap. That hasn't happened for over 3 1/2 years!

Burr Oak High School #50

Hanging in there!

We're spending a few days at the lake. We've been productive! The pontoon is out of the lake and on its trailer. Gilead is a spring fed lake, and it is at a low level along the shoreline, so I was worried about the pontoon being stuck in the muck! The water is 50 feet deep after the drop off. So glad that we bought the pontoon in March and had some nice outings on it before Ron's last bout of pneumonia. No regrets.
We are going to Ron's 50th high school graduation reunion this weekend. He was 17 when he graduated; I was there! Literally a lifetime ago.
Ron is struggling with accepting needing oxygen 24-7. Of all the things he has been through, this has definitely bothered him the most. It also made him sad to see the pontoon taken out, and the big oak tree that had the grandkids'swing --in front of the cottage was cut down by the new owners. On an up note, our deck was restained this week, and it looks great. There is a boardwalk across the front and sides of our house, and that is going to be my fall project. It needs some repairs and staining.
Enjoy the remainder of your summer activities!

Night Owl

Weird time to blog but I am wide awake! Up early this morning (July 20) because it was an Ann Arbor day, and I had bandages to change and central line care to do before leaving for bloodwork and a visit with a cardiologist for Ron. The day went very smoothly, and Ron has been taken off his heart medication. Often when we see a new doc, there are a lot of blanks to fill in by answering loads of questions, but she had previewed everything and was ready to get right to the cardiac issues. She didn't call his heart issue a heart attack...a cardiac event caused by pneumonia in both lungs and shortness of breath. His pulse was 52 And blood pressure lower than his normal when we checked in, so I am anxious to see how things moderate witout a med that slows everything down. It would be wonderful if he requires less supplemental oxygen. He has been lethargic while on this medication.
He has had two injuries due to the oxygen equipment, so we are visiting the wound clinic again. I hope I don't get investigated! I thought it was ridiculous how much wound dressing supplies were sent to us for previous wound care, but now I get it. Anyone who has been on prednisone for long term knows how fragile it makes your skin. Ron has rather extensive skin tears on one arm from a fall due to oxygen tubing, and then a few days later I tipped an oxygen tank over, and it hit his leg.
Tonight we had a homeowners association meeting for our villas, so I wanted to attend that...then crashed on the couch afterwards, so that is why I am wide awake now. Wound clinic appointment in about 6 hours, so I need to get back to sleep!

Packing Again

Getting ready today to make the trip back to BG. There is always quite a bit to do, so I don't hate myself for a mess when we return! We have had a very busy time here at Gilead Lake. It was a 4th of July that I will always remember! I will add a couple pictures. Family time is special, and so this holiday was beyond special with all four of the kids and families home. My sister and brother in law hosted a get together on July 2nd, so all of the Troxell cousins from my side of the family were together for a beautiful lake day. Ron handled all of this "commotion" very well. He just sleeps when he needs to and retreats if too much is going on for him. His oxygen requirement is unchanged.
It was fun seeing tents in the yard and the grandkids swimming in the deep water. Our own fireworks, compliments of Andrew, were amazing. He had waited 3 years to provide a show for us. He was the family hero to Matt's kids as they assisted him with lighting everything. I will admit that I was tired when everyone left and needed more than a couple naps to recover!
Good times.

Oxygen Helping Ron

After ten days home, we have another new normal that includes oxygen for Ron. That meant making arrangements to have deliveries made in Bowling Green and Gilead Lake. The electric oxygenator made the trip. Then we use tanks when in the car or out at a store. All was going okay until we had a power outage for a few hours during a long period of thunderstorms. I called Consumers to get the approximate time for the electricity to come back on...was going to cut it fairly close With the tanks on hand, but it came back on 2 hours earlier than the estimate. Whew! Ron's oxygen requirement is pretty much what it was when he was discharged.
Ron has return appointments for a detailed CT of his lungs and an appt with a cardiologist in July. He also has an eye appt and is scheduled to have more eyedrops made from his blood. All of our kids and families will be visiting around the 4th of July. Special times and memories to make!

Check Up in Ann Arbor

Ron had bloodwork and an appointment with Dr. Mag and Tim in the Bone Marrow Transplant Clinic on Thursday morning. No red flags in his blood tests...in fact Ron never had a fever or white blood cell count out of the normal range with this pneumonia in both lungs. His oxygen level didn't drop low because his heart worked so hard to keep enough oxygen circulating. The result was chest pain/pressure and a mild heart attack. That's what took us to the ER in Bowling Green. He has a follow up with a cardiologist at U of M. We very much liked his cardiologist at Wood County Hospital, but in spite of the travel time to AA, it is so much easier and makes sense to go where all his medical history is. A cardio team at U of M monitored his heart activity and made the decision to do the stress test, not a cath when he was in the hospital. They will be in charge of his heart meds. A pulmonary team monitored his lung disease, and Ron will have a follow up detailed CT of his lungs in July. His lungs have worsened since pneumonia in August. It is possible that tapering the ECP treatments since last summer allowed the chronic GVHD to do more damage to his lungs, but we don't regret that decision. He has bacteria colonized in his lungs, so an infection is never completely cleared. Dr. Mag suggested resuming ECP, but Ron says he is done with that, so we asked about again trying a pill to treat the graft versus host disease. Ron is allergic to the two that are commonly used. (The reason for all the ECP) So for the time being, Ron keeps his central line, and he is taking a newer pill to treat GVHD. Fingers are crossed that no side effects with this one.
We have proclaimed a medical vacation for 3 weeks. The goal is to regain some strength before resuming appointments. The other new issue is that Ron now requires oxygen at home. He had his last IV antibiotic for treatment of his pneumonia this evening. His meds are 3 antibiotics in pill form, an antiviral, antifungal, prednisone, 2 heart meds, mucinex, 3 inhalers-albuteral, Advair, and Spiriva, 81mg aspirin, jakafi (the new GVHD med), and celexa. I think he has a cast iron stomach!
We are so looking forward to all 4 of the kids and families joining us at the lake during "our vacation".

Nurse Jan

I always appreciate even more what Ron's nurses do when we're back home. Also, after having several days of adrenaline-driven energy, I feel a bit of a crash. Ron's pneumonia seems to continue to affect his heart rhythm and requirement for a little oxygen. Hope those things have resolved when we go back up to AA on Thursday. Ron's new medications are Coreg and Lipitor. We never know how Ron will handle new medications, so I am mother hen keeping an eye on things. His bloodwork on Thursday will give valuable info. We did not request setting up a home nurse visit or PT this time. Ron hardly walked during the time he was in the hospital.
We hope to return to the lake on Friday. That depends on Thursday's appointment. If nothing else, we are flexible. I did get out in my BG flower beds today. I can hardly believe everything that is in bloom, and I had brought a few things to plant two weeks ago. Done! My therapy.

We are weary but HOME

When the doc made rounds this morning, he asked Ron if he would like to go home. Yes, of course! Too low oxygen level with any exertion meant we would need oxygen at home for the first time. Ron also had a swallow test moving xray this morning. Because this was his 7th pneumonia, they wanted to rule out any swallowing abnormality that might cause food to go into his lungs occasionally. All normal. That still could have happened because occasionally he chokes and coughs when eating. He has some new strategies like sit up straight and one bite one swallow. Because he has lost his teeth due to GVHD, his menu is limited.
Ron mostly had nurses that he has had previously, and the two new ones were amazing. It is so good to have caregivers who know his history. We have been through a lot together. He also had an immunity infusion and his last ECP while in-patient. I hope this tunes him up good for the coming weeks when the kids and grandchildren come to the lake. I also hope the oxygen is a temporary intervention. But if It helps him to be more active, it is more than worth it. We will go back in a week to see his regular transplant doctor. He goes back to his pulmonary doctor in 6 weeks for follow up testing.
His new meds are for his heart. His heartrate continues to have extra early contractions in the ventricles, but so much better. I know that I have become numb to a lot of the things he deals with, but the new heart issues really scared me. I didn't even know that I could still feel that fear. So I pray that this pneumonia resolves itself. They are not keeping him on the IV antibiotics as long as they did in August.
Sleeping in a bed tonight is going to feel great! In addition to caregiving, I have plenty of things to do here in the villa and flower beds to keep me busy. Thanks so much for kind words, thoughts, and prayers through this latest crisis.
Love, Ron & Jan

A Busy Morning

After being away from the room 11-5:00 yesterday for the stress test, I guess that I expected the morning to not be so busy. Ron had his 135th extracorporeal photopheresis treatment in the room this morning. ECP. The ECP machine is large but on wheels and portable. That is his last treatment, and his central line was going to be removed. If he doesn't have to go home on IV antibiotics, it might be removed. The lab is still working on which antibiotic will be most effective, and it looks like he will go home with oxygen. Something new for us. The projected day to go back home to Bowling Green is Friday. Blue will meow for a whole day when we get back. Cale is taking care of his needs while we are away.
Ron also had a preliminary swallow test, and now a moving barium xray of his swallowing motion has been ordered. Coughing while eating and food getting into his lungs might be a contributing factor to his too frequent pneumonia. GVHD can affect the swallowing motion of the esophagus. So there are answers still waiting to be figured out, but the field is being narrowed.
Two weeks ago he was on Cedar Lake Golf Course with brother-in-law George playing "modified" golf. A week ago is when this hospital adventure started.

Some Good News! Stress Test Results

We were just told that the abnormal heart activity was/is being caused by the pneumonia, not the structure of the heart, and so nothing like a stent or bypass is needed. A heart cath is not needed. The focus will be on treatment of Ron's lungs. He will likely need an extended period of IV antibiotics after he is discharged. Not sure yet what all that means in regard to his ECP treatments he missed, but he will be keeping his central line awhile.

Stress Test - Cardiovascular Center- U of M

It was decided that Ron would not have the lung Bronch scope at this time. His sputum culture is growing bacteria to use in sensitivity testing to determine the best antibiotic regime for him. He is also growing the same yeast that is used to make beer...interesting! A bronch is still possible, but not probable because the culture is giving them info.
After much discussion and teamwork between pulmonary, cardiology, and bone marrow transplant, a cardiac stress test was ordered. It can take 3-6 hours, and that is where we are. They are about to begin. His stress test is chemical to simulate exercise. It is possible that they will find results that he needs a heart cath to take care of a blockage, probably using a stent. Ron is willing to have that done to improve quality of life, making it easier for him to do normal activities. At this time he is very limited in even being able to walk more than a few steps. Cardiac has said that they would not do a cath until his pneumonia is clearly under control. This is the 7th hospitalization for pneumonia since 2012.
Thanks for all prayers and positive vibes being sent our way. So glad that Cale set up the blog for me in 2010, so I have a means to get the same information out to all of you.
Love, Jan

Decisions

Ron has had pulmonary team visits, cardiology team visits, wound care visit, and BMT team visit. He feels a bit overwhelmed and has had a sleepy day. He has been taken off IV antibiotics except for one--cefepime. The pulmonary team is waiting to see what all the sputum culture grows before they make the decision about doing the bronch scope of his lungs. They have evidence of fungal and bacterial pneumonia. His lungs have worsened since August.
His wounds are now minor, nothing beyond what I have taken care of before.
They are certain that Ron has coronary disease. If they do a heart catherization, it will be when the pneumonia is resolved enough for discharge. The other path to take is a stress test and treat medically, but the stress test might also indicate that he needs the heart catherization. Likely there are stents that would be placed at that time. Being discharged by Wednesday is not going to happen.