Hi Chad,
Glad to hear your experience is going well (that is, as well as something so not-fun can go). It bolsters my hope that things will go well for my husband as he has his transplant within the next two weeks. Thanks for sharing your journey with us.
AZmom,
Regarding the inpatient / outpatient option, I would like to share my opinion that it would be almost impossible to care for two young children and be your husband's caregiver unless you have extraordinary family / social support. We were not given the option to do inpatient, and because of that, I will be the caregiver for my husband and our 7 year-old will be along for the ride. They said that it is not recommended that the same person be a caregiver for the patient as well as young children, and that they have rarely had a child as young as ours in the hospital every day. But he is well-behaved and there is no other option, so they are letting us do it.
I don't know if you live close enough to stay at your home (we don't), but another issue is that you cannot stay in post-transplant outpatient housing with children and would instead have to find an apartment or hotel. And of course it is hard to enforce hygiene with little ones, and if they are ill it may be hard to keep them away from him.
Lastly, at least at the two transplant centers we visited, the caregiver is not allowed to work during the 6-8 weeks of caregiving because it's 24/7, so you could also have to take a long leave of absence from work.
We are still wrapping up the pre-transplant exams and haven't begun the around-the-clock caregiving yet, so I can't comment on the actual experience, but am relaying the comments and conversations from social workers and the transplant coordinators regarding combining parenting and caregiving. Of course the expectations at your transplant center may be different, and you will have to weigh your options and make the decision that is best for your family. I just wanted to add some food for thought.
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: Chad's Autologous Stem Cell Transplant Journal
Hi Chad,
I have started a forum thread about my transplant journey, as I went in to hospital yesterday. Started melphalan on ice today. So Day -2 is almost over for me.
Will keep posting updates there.
Hang in there as the end is in sight and that means life!
I have started a forum thread about my transplant journey, as I went in to hospital yesterday. Started melphalan on ice today. So Day -2 is almost over for me.
Will keep posting updates there.
Hang in there as the end is in sight and that means life!
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Chad's Autologous Stem Cell Transplant Journal
Barbara, I'm looking forward to following your experience as well as the others here who are all going through our transplants "together". Amy, I hope you guys find a good solution. That's a tough situation with little kids. Our youngest is 10 and it's even been a little hard on him. I think we live close, let me know if there were any way to help ever.
Day +7 today.
If anything, I'm shocked how well I feel. Don't get me wrong, my WBC count is at 0, and I've taken fluids in the hospital the last two mornings, but I just don't feel really "sick". I'm still extremely fatigued and sleep most of the day, but I'm not minding that. The doctors say I'm about halfway out of the woods as far as having any complications from the transplant, so I'm not going to get cocky, but I feel pretty good. Sat up and watched a soccer game with my boys last night and felt fine.
One of the biggest changes has been the weird food cravings. All of the sudden yesterday I started craving one of those cheap $1.00 Totino's frozen pizzas. My wife went and bought one and it tasted magical! I was also a huge Diet Pepsi addict pre-transplant and haven't had a sip of the stuff in over a week. It has a really flat flavor now. Appetite in general has gone way down and I'm already off about 10 pounds from pre-transplant (I needed it!).
If I can make it through these next 3 days with no complications, I get the PICC line out and can start going in every other day rather than daily.
I'm praying that the rest of you are having a journey similar to mine and able to enjoy the Thanksgiving holiday at least a little.
Day +7 today.
If anything, I'm shocked how well I feel. Don't get me wrong, my WBC count is at 0, and I've taken fluids in the hospital the last two mornings, but I just don't feel really "sick". I'm still extremely fatigued and sleep most of the day, but I'm not minding that. The doctors say I'm about halfway out of the woods as far as having any complications from the transplant, so I'm not going to get cocky, but I feel pretty good. Sat up and watched a soccer game with my boys last night and felt fine.
One of the biggest changes has been the weird food cravings. All of the sudden yesterday I started craving one of those cheap $1.00 Totino's frozen pizzas. My wife went and bought one and it tasted magical! I was also a huge Diet Pepsi addict pre-transplant and haven't had a sip of the stuff in over a week. It has a really flat flavor now. Appetite in general has gone way down and I'm already off about 10 pounds from pre-transplant (I needed it!).
If I can make it through these next 3 days with no complications, I get the PICC line out and can start going in every other day rather than daily.
I'm praying that the rest of you are having a journey similar to mine and able to enjoy the Thanksgiving holiday at least a little.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Chad, that is really great news. I hope you continue to do well.
That's really funny about the Totino's pizza. I'm glad you find something that made you eat. My husband said today that he feels like the change in taste is starting to kick in today. Water doesn't taste too great to him now.
My husband and I are away from our families for Thanksgiving, so tomorrow might be a little rough for us, but we have agreed that we are going to enjoy the time with each other and have a great Christmas with our families.
Happy Thanksgiving!
That's really funny about the Totino's pizza. I'm glad you find something that made you eat. My husband said today that he feels like the change in taste is starting to kick in today. Water doesn't taste too great to him now.
My husband and I are away from our families for Thanksgiving, so tomorrow might be a little rough for us, but we have agreed that we are going to enjoy the time with each other and have a great Christmas with our families.
Happy Thanksgiving!
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TCG - Name: Tara
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 43
Re: Chad's Autologous Stem Cell Transplant Journal
AZ mom,
As mplsterrapin said, I would strongly urge you and your husband to take the inpatient route if you have two small children. We only have one toddler (much less a new baby, gah!) and were lucky to have my in-laws providing care in my husband's hospital room for three weeks, and then afterwards while he was recovering at the short-term hotel near the hospital for almost another three weeks in another city, while I was with our child at home and working.
He did have issues that required nursing care, intervention, and meds – pretty much daily. Nothing major, but fevers, diarrhea, nausea, and trouble sleeping – things that might have required him to be re-admitted or discharged multiple times if he was outpatient. My in-laws were very busy keeping him comfortable, washing his clothes, linens, trying to sneak in a shower or a walk outside for themselves, etc. I honestly was relieved that his parents and the nursing team were able to do that heavy lifting while I could focus on our child and managing things at home.
As mplsterrapin said, I would strongly urge you and your husband to take the inpatient route if you have two small children. We only have one toddler (much less a new baby, gah!) and were lucky to have my in-laws providing care in my husband's hospital room for three weeks, and then afterwards while he was recovering at the short-term hotel near the hospital for almost another three weeks in another city, while I was with our child at home and working.
He did have issues that required nursing care, intervention, and meds – pretty much daily. Nothing major, but fevers, diarrhea, nausea, and trouble sleeping – things that might have required him to be re-admitted or discharged multiple times if he was outpatient. My in-laws were very busy keeping him comfortable, washing his clothes, linens, trying to sneak in a shower or a walk outside for themselves, etc. I honestly was relieved that his parents and the nursing team were able to do that heavy lifting while I could focus on our child and managing things at home.
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Chad's Autologous Stem Cell Transplant Journal
Day +11
I got admitted to the hospital last night, which was my one goal to try and avoid. Had a slight temperature and they want to make sure there are no infections, since my white count was still only 0.2.
I would say that days 8-10 were the hardest days for me so far as far as feeling crappy. The biggest side effect I've had to deal with is the almost constant, uncontrollable diarrhea. Luckily, I have avoided some of the other effects.
The nurses tell me that I should be turning a corner in the next couple days and feeling a little better every day. I still have almost no appetite and I've been give supplements and fluids in the hospital most days. It's hard to think of food when your stomach is in such commotion. Now my mind is turning to thoughts of how successful the transplant was - that is now my biggest anxiety.
Prayers and good vibes to Dean, Tara's husband, Barbara, and Amy's husband. It is interesting that I have never met any of you but feel connected through this crazy shared experience. I think of you all daily and pray for your quick recovery.
I got admitted to the hospital last night, which was my one goal to try and avoid. Had a slight temperature and they want to make sure there are no infections, since my white count was still only 0.2.
I would say that days 8-10 were the hardest days for me so far as far as feeling crappy. The biggest side effect I've had to deal with is the almost constant, uncontrollable diarrhea. Luckily, I have avoided some of the other effects.
The nurses tell me that I should be turning a corner in the next couple days and feeling a little better every day. I still have almost no appetite and I've been give supplements and fluids in the hospital most days. It's hard to think of food when your stomach is in such commotion. Now my mind is turning to thoughts of how successful the transplant was - that is now my biggest anxiety.
Prayers and good vibes to Dean, Tara's husband, Barbara, and Amy's husband. It is interesting that I have never met any of you but feel connected through this crazy shared experience. I think of you all daily and pray for your quick recovery.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Chad,
Being admitted back in the hospital is not all that uncommon during the lowest count stage and engraftment. My husband ran a 103.5 F (39.7 C) temp during that time and was readmitted for four days to rule out infection. After the fever broke, it was downhill from there. I hope it is for you as well.
Being admitted back in the hospital is not all that uncommon during the lowest count stage and engraftment. My husband ran a 103.5 F (39.7 C) temp during that time and was readmitted for four days to rule out infection. After the fever broke, it was downhill from there. I hope it is for you as well.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Chad's Autologous Stem Cell Transplant Journal
Hang in there Chad. It's a road that's worth walking down as it brings life at the end. It seems selfish to say this, but having you experience the journey ahead of me gives me insight and foreknowledge of what's going to happen ahead. I know it's not easy for you.
I trust your infection clears fast and you will be back home soon.
I trust your infection clears fast and you will be back home soon.
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Chad's Autologous Stem Cell Transplant Journal
Hang in there Chad. It is not bad to set goals, but don't be disappointed when you don't reach them. Being admitted is a very common occurrence even if it is a goal to avoid. I would also NOT think about or worry about whether the transplant was "successful" at this point. Don't put your energy into something you can't control and won't know for many, many days. Concentrate on today and getting better.
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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: Chad's Autologous Stem Cell Transplant Journal
Hi Chad,
I just want to second what Mark said about not putting your energy at this stage into worrying about whether the transplant is successful or not. Probably easier said than done.
Do put your energy into exercising as much as you can – walking or pedaling or whatever your medical team allows you to do. Exercise now pays big dividends later.
Best wishes to you and all the other folks in the stem cell transplant recovery process now. I think this may be a record number of people undergoing stem cell transplants, and discussing them in the Beacon, in the same time frame.
Mike
I just want to second what Mark said about not putting your energy at this stage into worrying about whether the transplant is successful or not. Probably easier said than done.
Do put your energy into exercising as much as you can – walking or pedaling or whatever your medical team allows you to do. Exercise now pays big dividends later.
Best wishes to you and all the other folks in the stem cell transplant recovery process now. I think this may be a record number of people undergoing stem cell transplants, and discussing them in the Beacon, in the same time frame.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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