A blood clot (or DVT, for deep vein thrombosis) was discovered today in Steve's left leg.
Yesterday when Dr. N was examining super Steve, he noticed Steve's swollen left leg and foot. We told him that the swelling has been an issue for a few months. I told him that two sonograms revealed no clots in his leg.
Dr. N ordered a sonogram of his leg anyway, just to be cautious. (Obviously it's a good thing I'm not the one ordering -- or not ordering -- tests!)
After Steve's first physical therapy session this morning, he returned to his bed and was wheeled off to imaging. He returned an hour later in good spirits.
About 30 minutes later, Steve's nurse told us the news.
We haven't spoken with Dr. N yet to learn how the clot will be treated. The usual course of treatment is blood thinners, but I'm not sure if that will be complicated by Steve's Avastin history.
One of the side effects of Avastin (the bio-agent that Steve has been taking since late 2008) is increased risk of DVT. Steve had been scheduled for another Avastin treatment today, but we canceled that this morning, before we knew about the clot, in favor of continued therapy at Zale. I've e-mailed Dr. M and her nurse to make sure they are aware of this wrinkle.
We do know that he's on bed rest for the remainder of the day. No more physical, occupational or video game therapy (Wii-hab!). No shower.
Insurance approved seven days of rehab yesterday. We used one Tuesday just by checking in. We're using another today, in which Steve received about 30 minutes of physical therapy. (That session was great, by the way! Steve was able to walk, using parallel bars and some help from the PT. He felt some discomfort in his lower back, but he powered through and impressed the PT and me.)
One of our concerns now is that Steve is going to burn through rehab days without really getting much rehab.
When I update later, I hope to be able to report:
1. How the clot will be treated
2. What happens to Steve's precious rehab days
We take great comfort in the many prayers on Steve's behalf. And we're cheered by a new catchphrase, courtesy of Julie: Out Damm Clot!
Showing posts with label insurance. Show all posts
Showing posts with label insurance. Show all posts
Wednesday, May 6, 2009
Sunday, May 3, 2009
Monday
Here is the current get-Steve-into-physical-rehab plan.
1. We wait to hear from UHC if they have approved his admission.
2. If we don't get an answer by noon Monday, then Dr. M will work on admitting him to Zale Lipshy. (This may take some careful wording/finagling. Oncology doesn't admit to Zale; the team admits to St. Paul. But we don't want him exposed to all the flu, pneumonia, who-knows-what-else germs floating around St. Paul.) Then we'd work on getting him transferred from a regular floor to the physical rehab floor.
3. Either way, he should be at Zale sometime Monday.
This could all be complicated by a new symptom. Steve developed a crackle in his chest overnight, which gave him fits trying to sleep. He has no fever right now. I'm checking him often. If he starts getting chills or a fever, we'll call Dr. M and then an ambulance. Then we'll have to deal with St. Paul -- we'll have no choice.
I'll update later today if there's news. I hope, though, that I don't need to update until tomorrow, with the good news that Steve is on his way to Zale.
1. We wait to hear from UHC if they have approved his admission.
2. If we don't get an answer by noon Monday, then Dr. M will work on admitting him to Zale Lipshy. (This may take some careful wording/finagling. Oncology doesn't admit to Zale; the team admits to St. Paul. But we don't want him exposed to all the flu, pneumonia, who-knows-what-else germs floating around St. Paul.) Then we'd work on getting him transferred from a regular floor to the physical rehab floor.
3. Either way, he should be at Zale sometime Monday.
This could all be complicated by a new symptom. Steve developed a crackle in his chest overnight, which gave him fits trying to sleep. He has no fever right now. I'm checking him often. If he starts getting chills or a fever, we'll call Dr. M and then an ambulance. Then we'll have to deal with St. Paul -- we'll have no choice.
I'll update later today if there's news. I hope, though, that I don't need to update until tomorrow, with the good news that Steve is on his way to Zale.
Friday, May 1, 2009
Continuing to wait
I spent a lot of time on the phone and on hold today, trying to get the admissions process moving. I was patient but firm. I used phrases such as, "Before we begin, I should let you know I'm very frustrated," and "What other recourse do we have?" and "We are concerned about safety at home."
I had no luck. Neither did the case manager at Zale.
(I did learn that UHC has a Rapid Response Team, which I'm going to ask for every time now, and that you apparently have to ask three times for a better answer before a representative will give you one. When it was clear that I wasn't going to hang up, the customer service representative was more responsive, though certainly not helpful.)
I think we have two options:
I regret that with the physically and emotionally wearing week we've had, I've decided to back out of running the 5-mile race at White Rock with friends Saturday morning in honor of Steve. We can't wait to see photos of the Run for Steve team and hear about the great show of support for super Steve!
I had no luck. Neither did the case manager at Zale.
(I did learn that UHC has a Rapid Response Team, which I'm going to ask for every time now, and that you apparently have to ask three times for a better answer before a representative will give you one. When it was clear that I wasn't going to hang up, the customer service representative was more responsive, though certainly not helpful.)
I think we have two options:
- Continue to wait for UHC to approve admission to rehab, which wouldn't happen until Monday at the earliest
- Push for admission to a regular hospital floor and then transition Steve to rehab, which could happen this weekend if Dr. M agrees
I regret that with the physically and emotionally wearing week we've had, I've decided to back out of running the 5-mile race at White Rock with friends Saturday morning in honor of Steve. We can't wait to see photos of the Run for Steve team and hear about the great show of support for super Steve!
Update
We're still home. Thankfully, Steve is doing OK. He slept well, and I was able to get him out of bed and up for the day on my own. (I definitely need help at night, when Steve is most fatigued and has run low on right-side strength.)
I spoke with a benefits employee with Steve's work this morning. She says that the United HealthCare account manager says Steve's stay has been approved. There's an admission number in the system.
Then I called the case manager with UT-SW who is trying to get Steve admitted. She says the that the admission number in the system doesn't really mean anything.
She also says it's highly unusual -- as in she's never seen it happen -- for a patient to be admitted to rehab from home. In addition, as of yesterday, a nurse case manager at UHC hadn't yet been assigned to Steve's case.
The case manager is going to recommend to Dr. M that, if we haven't received approval by 2 p.m. today, she admit Steve to the hospital for weakness and falls. He'd stay in the hospital for two days or so and then be transitioned (we hope!) to rehab.
So we continue to wait. We are thankful that Steve remains comfortable at home and that we've been able to keep him safe. Right now he's working and listening to Katie and best friend Noe chat in the playroom, just a few feet away. From the dining room table he can see activity on our street and glimpse pretty spring flowers and a full, healthy tree in the front yard.
I spoke with a benefits employee with Steve's work this morning. She says that the United HealthCare account manager says Steve's stay has been approved. There's an admission number in the system.
Then I called the case manager with UT-SW who is trying to get Steve admitted. She says the that the admission number in the system doesn't really mean anything.
She also says it's highly unusual -- as in she's never seen it happen -- for a patient to be admitted to rehab from home. In addition, as of yesterday, a nurse case manager at UHC hadn't yet been assigned to Steve's case.
The case manager is going to recommend to Dr. M that, if we haven't received approval by 2 p.m. today, she admit Steve to the hospital for weakness and falls. He'd stay in the hospital for two days or so and then be transitioned (we hope!) to rehab.
So we continue to wait. We are thankful that Steve remains comfortable at home and that we've been able to keep him safe. Right now he's working and listening to Katie and best friend Noe chat in the playroom, just a few feet away. From the dining room table he can see activity on our street and glimpse pretty spring flowers and a full, healthy tree in the front yard.
Thursday, April 30, 2009
Still no admission
We haven't heard from anyone today about Steve's admission to rehab at Zale. I've contacted Dr. M, who said she would check on the status.
Our home health physical therapist visited last night and instructed us both on proper technique for transitions -- from chair to wheelchair, from wheelchair to bed, etc. As long as he still has use of and strength in his right side, Steve is able to help a great deal. I'm there to help with the initial boost, to hold on tight and guide him to the right spot.
Steve slept fairly well last night and has been working from home all day.
Thanks for checking on sweet and amazing Steve!
Our home health physical therapist visited last night and instructed us both on proper technique for transitions -- from chair to wheelchair, from wheelchair to bed, etc. As long as he still has use of and strength in his right side, Steve is able to help a great deal. I'm there to help with the initial boost, to hold on tight and guide him to the right spot.
Steve slept fairly well last night and has been working from home all day.
Thanks for checking on sweet and amazing Steve!
Wednesday, April 29, 2009
Evaluation
The UT-SW outpatient therapy clinic called before 8:30 a.m. today and asked if we could have Steve there by 10 a.m. The scheduler told us to be prepared for possible admission to the inpatient service.
We scrambled. Liz took Katie to school for me. I packed a bag and made other arrangements. Layne and Bob lifted Steve from the bed to the wheelchair and eventually to the minivan.
Once at the clinic, we required more help to get him out. A tiny but strong physical therapist gave Steve a great big hug and danced him over to the wheelchair.
We were a little late for the appointment, but we made it.
Dr. R evaluated Steve and determined that he is a good candidate for physical rehab. And then she told us that we'd need to go home and wait. Insurance still hadn't approved the admission.
I admit that I was overwhelmed at the thought of getting Steve safely back into the car and home and then forcing him to do it all over again. But we had no choice.
Before we left the building, we went to radiology for an X-ray of Steve's back. He's been having severe back pain, which we suspect is muscular after Monday's fall, but Dr. R wanted to be sure. We haven't heard back, so we assume he's not suffering from broken vertebrae.
The same physical therapist returned him to the car.
When we got home, Martin was waiting for us and moved Steve from the car to the wheelchair to his home office spot in the dining room. Liz arrived shortly after with lunch.
So now we're both working from home, waiting to hear that United HealthCare has agreed to cover inpatient rehab.
Dr. R said the stay could be a week or two. It will depend on what goals we set and how long it takes to reach them.
I'll update when we have the go-ahead to return to Zale!
We scrambled. Liz took Katie to school for me. I packed a bag and made other arrangements. Layne and Bob lifted Steve from the bed to the wheelchair and eventually to the minivan.
Once at the clinic, we required more help to get him out. A tiny but strong physical therapist gave Steve a great big hug and danced him over to the wheelchair.
We were a little late for the appointment, but we made it.
Dr. R evaluated Steve and determined that he is a good candidate for physical rehab. And then she told us that we'd need to go home and wait. Insurance still hadn't approved the admission.
I admit that I was overwhelmed at the thought of getting Steve safely back into the car and home and then forcing him to do it all over again. But we had no choice.
Before we left the building, we went to radiology for an X-ray of Steve's back. He's been having severe back pain, which we suspect is muscular after Monday's fall, but Dr. R wanted to be sure. We haven't heard back, so we assume he's not suffering from broken vertebrae.
The same physical therapist returned him to the car.
When we got home, Martin was waiting for us and moved Steve from the car to the wheelchair to his home office spot in the dining room. Liz arrived shortly after with lunch.
So now we're both working from home, waiting to hear that United HealthCare has agreed to cover inpatient rehab.
Dr. R said the stay could be a week or two. It will depend on what goals we set and how long it takes to reach them.
I'll update when we have the go-ahead to return to Zale!
Friday, April 17, 2009
Today's events
Today's Dr. M appointment was a follow-up from Steve's hospitalization for pneumonia. She wanted to see lab numbers and listen to his lungs.
In the past few days, though, his symptoms have gotten worse. His headaches are almost constant. Yesterday he needed hydrocodone for the second time in a week -- the pain isn't always relieved by Tylenol. Also, his left side seems even less responsive than normal.
When we met with Dr. M's nurse early this afternoon, we shared our concerns. And I asked for an MRI earlier than May 14, his next scheduled scan. The team responded quickly and arranged for a scan at 2:45 p.m.
(His lungs sound clear!)
Before we headed to the imaging center (part of the same building as Dr. M's office), we visited with Dr. M for about an hour. She is such a supportive doctor, concerned about Steve's emotional health as well as physical.
We talked at length about Steve's fears, how Cooper and Katie are handling life with cancer, how this whole process just wears you out but how it also offers clarity about life's purpose.
We talked about treating every single moment as precious -- especially with the children.
(The conversation reminded me of a Jacqueline Kennedy quote I recently discovered: "If you bungle raising your children, I don't think whatever else you do well matters very much.")
She emphasized that Steve is an amazing father, husband and overall person. That his attitude and sense of humor have carried him this far.
After our visit, I grabbed sandwiches from a campus cafeteria, and we headed to the imaging center. And waited.
Steve's last MRI was March 20. Today is April 17. MRIs are allowed by insurance every 30 days.
So, the staff scrambled to get our insurance company to approve the scan. That process took more than two hours, so Steve waited until 4:45 p.m. for the MRI.
On our drive home, Dr. M called with results.
The image shows that the Damm Spot is slightly plumper all around, the cause of his increased symptoms. Dr. M's believes that this is swelling, not new tumor growth.
To address the problem, Steve will increase his steroid dose to 8 mg, up from 4 mg. Dr. M expects that this will help his symptoms. If it doesn't, she may increase it again to 12 mg.
The blood work shows that his platelets are a little low -- 93,000. We'll return Monday for another blood draw. If the counts drop more, the next dose of chemotherapy and Avastin will be delayed. If the numbers are stable or a little higher, he'll most likely receive the medicine on Wednesday.
Recap:
1. Steve's lungs are clear, indicating his pneumonia is resolved.
2. His platelets are a little low and need to climb for chemotherapy and Avastin next week.
3. The tumor is a little plumper all around, compared to March 20. The theoretical cause is inflammation, which will be treated with a double dose of Decadron.
We give thanks for quick and compassionate response from Steve's medical team, for a scan that doesn't look too bad, for the hope that steroids will improve his symptoms, for a group of family and friends that continues to support us in every possible way, for unceasing prayer.
In the past few days, though, his symptoms have gotten worse. His headaches are almost constant. Yesterday he needed hydrocodone for the second time in a week -- the pain isn't always relieved by Tylenol. Also, his left side seems even less responsive than normal.
When we met with Dr. M's nurse early this afternoon, we shared our concerns. And I asked for an MRI earlier than May 14, his next scheduled scan. The team responded quickly and arranged for a scan at 2:45 p.m.
(His lungs sound clear!)
Before we headed to the imaging center (part of the same building as Dr. M's office), we visited with Dr. M for about an hour. She is such a supportive doctor, concerned about Steve's emotional health as well as physical.
We talked at length about Steve's fears, how Cooper and Katie are handling life with cancer, how this whole process just wears you out but how it also offers clarity about life's purpose.
We talked about treating every single moment as precious -- especially with the children.
(The conversation reminded me of a Jacqueline Kennedy quote I recently discovered: "If you bungle raising your children, I don't think whatever else you do well matters very much.")
She emphasized that Steve is an amazing father, husband and overall person. That his attitude and sense of humor have carried him this far.
After our visit, I grabbed sandwiches from a campus cafeteria, and we headed to the imaging center. And waited.
Steve's last MRI was March 20. Today is April 17. MRIs are allowed by insurance every 30 days.
So, the staff scrambled to get our insurance company to approve the scan. That process took more than two hours, so Steve waited until 4:45 p.m. for the MRI.
On our drive home, Dr. M called with results.
The image shows that the Damm Spot is slightly plumper all around, the cause of his increased symptoms. Dr. M's believes that this is swelling, not new tumor growth.
To address the problem, Steve will increase his steroid dose to 8 mg, up from 4 mg. Dr. M expects that this will help his symptoms. If it doesn't, she may increase it again to 12 mg.
The blood work shows that his platelets are a little low -- 93,000. We'll return Monday for another blood draw. If the counts drop more, the next dose of chemotherapy and Avastin will be delayed. If the numbers are stable or a little higher, he'll most likely receive the medicine on Wednesday.
Recap:
1. Steve's lungs are clear, indicating his pneumonia is resolved.
2. His platelets are a little low and need to climb for chemotherapy and Avastin next week.
3. The tumor is a little plumper all around, compared to March 20. The theoretical cause is inflammation, which will be treated with a double dose of Decadron.
We give thanks for quick and compassionate response from Steve's medical team, for a scan that doesn't look too bad, for the hope that steroids will improve his symptoms, for a group of family and friends that continues to support us in every possible way, for unceasing prayer.
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