We were told by both of the transplant centers in Minnesota (Mayo and the University of Minnesota) that inpatient transplant was not an option and that it had to be outpatient.
Medically speaking, I can see the sense in that, because if it goes well for a patient (as it did for my husband), there is no reason to put them in the hospital, and if things go downhill, they can be admitted as needed.
However, I am horrified at the sociological aspects of this system. It may work well for people who have strong family support systems and are financially stable, but I can see it being completely undoable for others. What are single-by-choice or widowed people without children supposed to do? Or people whose spouses or children are not capable of caring of them? How can they ask anyone else to give up their family and job and life and move to another city for an indefinite period of time?
We are a prime example of how they said it could be 6-8 weeks, but likely 5 weeks because he's healthy, and now we've been here over 10 weeks and still don't know when we'll get to go home. What about people who don't have a car to drive to the transplant center every day? There is transplant housing near Mayo (but not walking distance if you're not feeling well), but they don't even allow children to come visit you, let alone stay with you. So you are supposed to find not only someone to move with you to the transplant housing, but someone else to care for your children around the clock?
Basically what I see is insurance companies saving untold thousands of dollars by requiring a patient to provide their own caregiver, and in some cases even their own housing. Not only are the patient's finances likely devastated by going so long without work, but the family takes an even larger hit if now the spouse has to take a leave of absence or quit their job to care for them. I think it would be great for the patient to be allowed to stay in their home, a hotel, or transplant housing, but the insurance companies should at least offer to provide a nurse or PCA to keep an eye on them during the time they are supposed to be cared for 24/7.
My husband and I are very blessed that we have each other, we have a car, our son is mature enough to spend his days in a hospital without causing problems, I can understand all the caregiving instructions, we're emotional stable, I'm physically able to help him when needed, and Mayo has a great social worker who has helped us find a few small grants during these months neither of us is working.
But I know many other people who simply do not have the financial or social resources to pull it off, and have mentioned to me that they hope this never happens to them because they would not be able to get the treatment they needed, especially single parents. In fact, when we were considering the University of Minnesota, the social worker told me point-blank, "We'd prefer you not care for a young child as well as your husband because it might be too overwhelming, but since you're the only one available, you'd better do it or else he can't have his transplant." I just don't think people should be faced with that sort of pressure when they should be focusing their mental and emotional effort on beating this cancer and coming out the other side in good shape.
Forums
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Inpatient vs. outpatient stem cell transplants
You raise some really great points, mplsterrapin. These are perspectives I just haven't considered because it isn't my situation. I can see especially the high cost and lack of a strong caregiver as big problems for an outpatient transplant.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Inpatient vs. outpatient stem cell transplants
Alizabeth,
I just caught your post. I am about 2 1/2 months from my transplant. I will skip all my personal treatments and go to what I have learned so far as to the inpatient versus outpatient issue.
The hospital where I will be going has both options. My first thought was that being an outpatient might be the way to go. They have their own village with about 40 small units. Each is self contained with one single and one double bed. Everything is there – complete kitchen, large fridge, recliners, even a flat screen TV. Also beautiful gardens everywhere.
You have to supply your own food. They change the bedding, and towels are changed daily. You have to do your own laundry, which there are several machines at their office.
Now, the requirements. Mileage: You have to live at least 70 miles away. I am 200 miles away. You must have a 24/7 caregiver. Also, there is a room fee of around $65 per day. And I would also need to have at least two doctor visits per week.
Without a caregiver, and very little assistance financially for one, I would have to pay for that myself at around $20 per hour. And I would need to be taken from the unit every morning for labs and hydration.
With all that being said, I am going to have this done as an inpatient. I did meet the mileage part, being 200 miles from home, but hiring a caregiver is a huge cost. I also feel personally that I will be in a room that has filtered air and assistance right there when needed. Never know what could happen and you wont have to deal with traveling to the hospital. Labs done right there also.
Everyone is so different with multiple myeloma. Some folks might do just fine as an outpatient. With my luck, I feel better being inpatient with help if needed just steps away.
Hope this helps a little. Castaway
I just caught your post. I am about 2 1/2 months from my transplant. I will skip all my personal treatments and go to what I have learned so far as to the inpatient versus outpatient issue.
The hospital where I will be going has both options. My first thought was that being an outpatient might be the way to go. They have their own village with about 40 small units. Each is self contained with one single and one double bed. Everything is there – complete kitchen, large fridge, recliners, even a flat screen TV. Also beautiful gardens everywhere.
You have to supply your own food. They change the bedding, and towels are changed daily. You have to do your own laundry, which there are several machines at their office.
Now, the requirements. Mileage: You have to live at least 70 miles away. I am 200 miles away. You must have a 24/7 caregiver. Also, there is a room fee of around $65 per day. And I would also need to have at least two doctor visits per week.
Without a caregiver, and very little assistance financially for one, I would have to pay for that myself at around $20 per hour. And I would need to be taken from the unit every morning for labs and hydration.
With all that being said, I am going to have this done as an inpatient. I did meet the mileage part, being 200 miles from home, but hiring a caregiver is a huge cost. I also feel personally that I will be in a room that has filtered air and assistance right there when needed. Never know what could happen and you wont have to deal with traveling to the hospital. Labs done right there also.
Everyone is so different with multiple myeloma. Some folks might do just fine as an outpatient. With my luck, I feel better being inpatient with help if needed just steps away.
Hope this helps a little. Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Inpatient vs. outpatient stem cell transplants
This is hard. My own transplant was inpatient at the City of Hope in Duarte, California. At the time, they did all transplants inpatient, but I understand that they do the vast majority as outpatient procedures.
I see that one of the factors is 'food.' Well, I remember that the City of Hope was more like a hotel room service. One could order what one wanted when one wanted, and I do remember one very nice meal of salmon.
But after that? I got C. diff, was extremely nauseated, and simply didn't eat anything at all for at least three weeks. I was fed intravenously. Indeed, I didn't want to eat anything except mashed potatoes or mashed carrots for close to two months after I got home, so THAT'S not an issue.
What IS an issue for me is the caretaker situation. I'm a widow and am the caregiver for my elderly parents. Mom is 87 and Dad is 91. Bless 'em, THEY can't help me for the next transplant. My sister, who stayed with me during the last one, absolutely cannot do it again; she's moving. I have my children, of course, two of whom live fairly close to me. However, they can't provide the sort of 24/7 caregiving an outpatient transplant would require. My daughter is the caregiver for her disabled husband, and my son is ... well, he's getting married in May.
Now the idea for me, when I relapse, IS to have another transplant, since the last one worked so well (and is still working!).
But outpatient? Not a chance. LOVE to try it, But although being a 'patient' AND a 'caregiver' is working out OK so far, if and when it comes to another transplant?
That is simply not going to work. Sometimes it's not completely about medical issues, y'know?
I see that one of the factors is 'food.' Well, I remember that the City of Hope was more like a hotel room service. One could order what one wanted when one wanted, and I do remember one very nice meal of salmon.
But after that? I got C. diff, was extremely nauseated, and simply didn't eat anything at all for at least three weeks. I was fed intravenously. Indeed, I didn't want to eat anything except mashed potatoes or mashed carrots for close to two months after I got home, so THAT'S not an issue.
What IS an issue for me is the caretaker situation. I'm a widow and am the caregiver for my elderly parents. Mom is 87 and Dad is 91. Bless 'em, THEY can't help me for the next transplant. My sister, who stayed with me during the last one, absolutely cannot do it again; she's moving. I have my children, of course, two of whom live fairly close to me. However, they can't provide the sort of 24/7 caregiving an outpatient transplant would require. My daughter is the caregiver for her disabled husband, and my son is ... well, he's getting married in May.
Now the idea for me, when I relapse, IS to have another transplant, since the last one worked so well (and is still working!).
But outpatient? Not a chance. LOVE to try it, But although being a 'patient' AND a 'caregiver' is working out OK so far, if and when it comes to another transplant?
That is simply not going to work. Sometimes it's not completely about medical issues, y'know?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Inpatient vs. outpatient stem cell transplants
Dianaiad has brought up some very good information. We all are dealing with multiple myeloma in one way or another. At different stages. And different treatments.
Then throw in the not knowing of what our insurance might cover, possible caregivers, and personal obligations.
Like Dianaiad, I helped my mother with all her personal affairs, paying the bills, and shopping. I never told her I had multiple myeloma. There was no need for her to worry. She passed away 2 years ago at 94. My wife, who would make a great caregiver, had neurosurgery over a year ago, and she still cannot drive, which is a key part being a caregiver. So for some like myself, inpatient is my only option. And actually seems to be a safer way to go.
It isn't always about the medical condition, as Dianaiad said.
Castaway
Then throw in the not knowing of what our insurance might cover, possible caregivers, and personal obligations.
Like Dianaiad, I helped my mother with all her personal affairs, paying the bills, and shopping. I never told her I had multiple myeloma. There was no need for her to worry. She passed away 2 years ago at 94. My wife, who would make a great caregiver, had neurosurgery over a year ago, and she still cannot drive, which is a key part being a caregiver. So for some like myself, inpatient is my only option. And actually seems to be a safer way to go.
It isn't always about the medical condition, as Dianaiad said.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Inpatient vs. outpatient stem cell transplants
I had my stem cell transplant in 2010. At that time, I packed my bag to be inpatient at a special hospital unit where the blood cancer patients stay while having transplants, or for other reasons concerning low immunities. It is set up so that the air flow doesn't go through the whole hospital, thus preventing airborne germs from being brought into the unit.
I was able to go home after the first two days, as I recall, since I was well enough to do so, we only live a 20-minute drive from the cancer centre, and I had more than one caregiver. My husband was an angel and took care of me, my daughters dropped in frequently, and my elderly parents took over the driving back and forth for the weekday blood draws and checkups in the bone marrow transplant outpatient unit. My husband was working and couldn't juggle his time around to take me there as much as I needed to go, and my father actually enjoyed seeing the hospital and how well it all functioned! But, even with all of that care, I still spiked a fever and had to be readmitted to the unit for a couple of days, while they checked to see if I had a blood infection or other infection.
I don't think that one can say if one should be inpatient or outpatient given all of these factors, and in fact, one may be both, as I was. I think it was nice that our system had the flexibility that it did when I had my transplant.
I was able to go home after the first two days, as I recall, since I was well enough to do so, we only live a 20-minute drive from the cancer centre, and I had more than one caregiver. My husband was an angel and took care of me, my daughters dropped in frequently, and my elderly parents took over the driving back and forth for the weekday blood draws and checkups in the bone marrow transplant outpatient unit. My husband was working and couldn't juggle his time around to take me there as much as I needed to go, and my father actually enjoyed seeing the hospital and how well it all functioned! But, even with all of that care, I still spiked a fever and had to be readmitted to the unit for a couple of days, while they checked to see if I had a blood infection or other infection.
I don't think that one can say if one should be inpatient or outpatient given all of these factors, and in fact, one may be both, as I was. I think it was nice that our system had the flexibility that it did when I had my transplant.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Inpatient vs. outpatient stem cell transplants
I'm looking at a transplant in about 6 months or so (second auto for me).
My first was inpatient. I was in for three weeks, no major issues, but it was not smooth sailing. Major microsites, kidney impairment from chemo, and blood pressure bottoming out all the time requiring constant fluids and blood pressure issues (fainting if I got out of bed). I was told I should be in the intensive care unit (ICU) due to the blood pressure issue, but since transplant unit is critical care, the nurses were able to manage my care and the ICU doctor would stop in and check on me.
So at my last follow-up, my hematologist told me the hospital now does transplant as an outpatient procedure. My husband looked at her point blank and said "No thank you, then we will not be going that route." I have a toddler at home (little germ factory), we live in a tiny bungalow house (one bedroom plus small nursery for the baby), so no guest room or separate area. No family in our area, and it takes over an hour in rush hour traffic to drive to the hospital.
My doctor looked a bit surprised but said they would "discuss my case" and probably do it inpatient. At this point, there are enough treatments that transplant is not the be all and end all. If you are not comfortable with the treatment they are talking about, then ask for other options.
My first was inpatient. I was in for three weeks, no major issues, but it was not smooth sailing. Major microsites, kidney impairment from chemo, and blood pressure bottoming out all the time requiring constant fluids and blood pressure issues (fainting if I got out of bed). I was told I should be in the intensive care unit (ICU) due to the blood pressure issue, but since transplant unit is critical care, the nurses were able to manage my care and the ICU doctor would stop in and check on me.
So at my last follow-up, my hematologist told me the hospital now does transplant as an outpatient procedure. My husband looked at her point blank and said "No thank you, then we will not be going that route." I have a toddler at home (little germ factory), we live in a tiny bungalow house (one bedroom plus small nursery for the baby), so no guest room or separate area. No family in our area, and it takes over an hour in rush hour traffic to drive to the hospital.
My doctor looked a bit surprised but said they would "discuss my case" and probably do it inpatient. At this point, there are enough treatments that transplant is not the be all and end all. If you are not comfortable with the treatment they are talking about, then ask for other options.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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