[Ginny]

Re: Housing after stem cell transplant

by Ginny on Fri Jan 31, 2014 2:29 pm

Hello,

I agree with Julie, who just posted. I did everything up to the melphalan infusion as an outpatient, and that (the harvesting) was challenging enough. I am amazed that the transplants are sometimes done on an outpatient basis. I had a quite difficult time just after the transplant, including fever, diarrhea, vomiting and even ICU psychosis for a couple of days. I was in bed almost all the time except for my daily shower, and was unable to read or even focus on television.

At one point my white blood count was 0.01, which is basically as low as they can measure. I would not have wanted to be home for those 18 days. Even after I was released, I had to go in several times a week for the first two or three weeks, to be checked and receive IV rehydration (I had severe thrush and had difficulty eating and drinking until that cleared up).

It took a full six months for me to feel relatively normal, both physically and mentally so the recovery was long and difficult. Now, 10 months post transplant, I am doing well and in complete remission. In short, I think this is a time when your husband needs to be in very close proximity to expert medical care and where you get all the nursing and caregiving support you can orchestrate. It's worth it in the end, but a long road.

[Extraart]

Re: Housing after stem cell transplant

by Extraart on Fri Jan 31, 2014 5:38 pm

We live an hour and a half from the hospital where my husband was his receiving stem cell transplant. He was hospitalized for 21 days. I stayed at a nearby motel. When he was released, we had no problem being allowed to go home and drive back and forth for our follow up visits. Needless to say, I drove. For some of the visits, we opted to stay overnight so that I would not have to deal with weather issues. We found a couple of hotels that offered discounts for hospital patients.

I always brought a spray bottle of Lysol and paper towels and cleaned the entire room and bathroom when we got to the hotel. I wiped down every surface.

It was a bit of an exhausting period.

[darnold]

Re: Housing after stem cell transplant

by darnold on Fri Jan 31, 2014 5:53 pm

I had my SCT at Johns Hopkins, which is about 50 miles away from Northern Virginia, where I live. While SCTs are done "out-patient," the reality is that I was home for the first part of the process (Neupogen shots after the first round of chemo) and living in a Hopkins-provided apartment across the street from the hospital for the second part (cell collection, transplant, and second round of chemo). Since I became very ill after the second round of chemo, being across the street was very important, and I ended up in-patient for a week.

Driving back and forth to Baltimore a few times was easy and worth it.

I also live near a local hospital so I knew that help was nearby if I needed it once I came home. I went there once for a red blood cell transfusion, but otherwise didn't need it and was fine just seeing my home oncologist.

[Victoria]

Re: Housing after stem cell transplant

by Victoria on Fri Jan 31, 2014 11:16 pm

Thank you all for the feedback. I feel blessed to know so many people want to help and told their experience with the transplant. This is a big help for me and my husband in taking the right decision further in our journey ....

A lot of thanks to “Beacon Staff ", I am glad I found the forum.

Victoria

[Guitarnut]

Re: Housing after stem cell transplant

by Guitarnut on Sat Feb 01, 2014 1:07 am

Being a guy, i went into the hospital thinking it was going to be a cakewalk. It kicked my butt! I could have NEVER done on an outpatient basis. I was in the hospital for 3 weeks and then re-admitted 3 more times over the following weeks.

Took me almost a year before I started feeling close to normal. I am now in CR and so glad i went through with the procedure even though it was so hard on me.

That being said, others have a relatively easy go of the whole process. You just never know what the response will be. Think positive, hope for the best and prepare for the worst. Personally I would want to be as close to the facility as possible.

[Kenny G]

Re: Housing after stem cell transplant

by Kenny G on Sat Feb 01, 2014 10:19 pm

Big Bill,

I would love to know what insurance you had that covered the travel and accommodation expenses.