Hi BQ,
Regarding JPC's comment on eating well prior to the transplant, in the material I was given prior to my transplant, it said that calcium helps with the stem cell mobilization. So I used that as an excuse to go out the night before my stem cell collection and have a large chocolate sundae. First time as an adult that I didn't feel guilty when eating a chocolate sundae!
I had my SCT as an inpatient. I'm glad I did because I came down with an E. coli infection on Day +8 and fairly quickly went into septic shock. The nurses and doctors were on top of it very quickly and things worked out ok. If my wife and I had been staying in a hotel, I know we would not have realized what was happening as quickly as the pros did. On the other hand, who's to say I would have gotten the infection in the first place if I was staying somewhere other than a hospital, since hospitals are risky places for infections?
And, as others have mentioned, my transplant center provided us a ton of information beforehand about what to do and what to expect.
Best wishes to you and your husband for a smooth and successful transplant experience.
Mike
Forums
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Preparation for an autologous stem cell transplant
Based on how my husband felt during his transplant, I think one hour away is much too far to be an out patient. It just WOULD NOT have worked for him.
We rented a small apartment near Mayo that is frequently rented by patients. I'm sure it was well cleaned beforehand, but I'm sure not to the extent of air ducts, etc.
Before we came home after the transplant, I had my cleaning lady come. Again: no special cleaning. Did not have the carpets cleaned. At the time we had a cat, a dog, and a 17-year old and 19-year old living at home (alone, while we were gone).
Obviously, where you stay needs to be well disinfected (counter tops and bathrooms), but I think the most important part of staying infection-free post-transplant is frequent, good hand washing - by the patient, and by everyone who enters the home, first thing upon entering the home.
Good luck!
We rented a small apartment near Mayo that is frequently rented by patients. I'm sure it was well cleaned beforehand, but I'm sure not to the extent of air ducts, etc.
Before we came home after the transplant, I had my cleaning lady come. Again: no special cleaning. Did not have the carpets cleaned. At the time we had a cat, a dog, and a 17-year old and 19-year old living at home (alone, while we were gone).
Obviously, where you stay needs to be well disinfected (counter tops and bathrooms), but I think the most important part of staying infection-free post-transplant is frequent, good hand washing - by the patient, and by everyone who enters the home, first thing upon entering the home.
Good luck!
-
rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Preparation for an autologous stem cell transplant
BehaviorQueen,
I have come to learn that each person has their own very unique response to a SCT. Some people sail through the entire process and report virtually no problems. I was not one of those people.
Based on my experience, I would have great difficulty imagining going through the process as an outpatient. I had severe nausea and diarrhea that would have been very difficult for a caregiver to manage at home, or even in a nearby hotel! I was hooked up to a feeding tube for what seemed like forever.
A couple of logistical recommendations that I wish some one had told me about:
In addition, I found the "low microbe" diet that others have mentioned to be about as appealing as cardboard. When I complained to two of my doctors, they asked if I had tried Boost or Ensure. I asked them if they had ever tasted that crap. That response elicited peels of laughter, and they never recommended either product again. Look, I'm not recommending that others follow my example, but I will say that I feel like the "contraband" food I had friends and family sneak in was a salvation!
If you choose to follow my route, be reasonable. Make sure the food is fully cooked and mild--though I will admit that chili relleno was a godsend. Obviously, an important part of my recovery was to find ways to maintain a sense of humor. If not following some of the overly stringent hospital guidelines helps, well, I'm an advocate.
Just a note of interest on the stringent food guidelines, as a result of trials being done with kids undergoing stem cell transplantation in the same hospital as I was in, they have now dramatically revised and expanded the food choices. Admittedly, chili rellenos are probably still not on the list ...
Lest you think I've portrayed an overly negative picture about the stem cell transplant, I am now 2 years post transplant and have been off all myeloma drugs for over a year. To me this is a miracle, especially when you consider that I started at 12% healthy plasma cells.
Aloha and best to you,
Daniel
I have come to learn that each person has their own very unique response to a SCT. Some people sail through the entire process and report virtually no problems. I was not one of those people.
Based on my experience, I would have great difficulty imagining going through the process as an outpatient. I had severe nausea and diarrhea that would have been very difficult for a caregiver to manage at home, or even in a nearby hotel! I was hooked up to a feeding tube for what seemed like forever.
A couple of logistical recommendations that I wish some one had told me about:
- make sure they provide you with medicated wipes for the diarrhea--the skin around the anal opening may become extremely raw and inflamed; regular toilet paper was pure torture.
- I have never been someone who has been prone to nausea. I've only thrown-up a handful of times in my lifetime, but post transplant I was miserable. None of the standard anti-nausea meds had any affect. Your doctor will probably first prescribe some standard anti-emitic like ondansetron (Zofran), which is a wonderful drug for mild nausea and has virtually no side effects, but not for what I was experiencing! Lorazepam (Ativan) was the only thing that helped. Set it up with your doctor beforehand to have it available as part of your potential treatment protocol. In my case, I found that setting it up so I could get 1/2 doses on a more regular basis worked best. The lorazepam will also help you sleep. A month or two post transplant the ondansetron will again work just fine. Other Beacon members have stated that they requested, and received, Marinol, which is synthetic cannabis--obviously this would also help with appetite
In addition, I found the "low microbe" diet that others have mentioned to be about as appealing as cardboard. When I complained to two of my doctors, they asked if I had tried Boost or Ensure. I asked them if they had ever tasted that crap. That response elicited peels of laughter, and they never recommended either product again. Look, I'm not recommending that others follow my example, but I will say that I feel like the "contraband" food I had friends and family sneak in was a salvation!
If you choose to follow my route, be reasonable. Make sure the food is fully cooked and mild--though I will admit that chili relleno was a godsend. Obviously, an important part of my recovery was to find ways to maintain a sense of humor. If not following some of the overly stringent hospital guidelines helps, well, I'm an advocate.
Just a note of interest on the stringent food guidelines, as a result of trials being done with kids undergoing stem cell transplantation in the same hospital as I was in, they have now dramatically revised and expanded the food choices. Admittedly, chili rellenos are probably still not on the list ...
Lest you think I've portrayed an overly negative picture about the stem cell transplant, I am now 2 years post transplant and have been off all myeloma drugs for over a year. To me this is a miracle, especially when you consider that I started at 12% healthy plasma cells.
Aloha and best to you,
Daniel
-
DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
13 posts
• Page 2 of 2 • 1, 2
Return to Treatments & Side Effects