Reply To: Stem Cell Transplant

May 29, 2012 at 5:40 pm

Pat – lots of questions and I will try to answer what I know.

The process starts when you send the application and medical records to NW. After they review, if they believe you might be a viable candidate, they will call you for an evaluation appointment. That will last three days (Dr. Burt – head of the program – on Wed along with blood work. Thur is usually the nerve conduction study/etc, then Fri you will meet with the neurologist). You usually know early the week following the evaluation if you are accepted. If you are, then NW will apply for the insurance – they did a great job with mine and it went through first time. Once financing is accepted, then they will schedule the sct. The time involved there depends. I work, so they tried to condense it all for me and I was in Chicago around 7 weeks. Another lady was off work and went for the pre-sct testing and harvesting of the stem cells, then went back for the high dose chemo/transplant part, so hers covered 3 months. So once in the program, you will do approx 2 weeks of pre-testing – the 1st week is standard and the 2nd is for any call backs on any issues specific to you (heart, allergies, whatever … most get a call back of some sort). Once cleared, you then go into the hospital for one night for “mobilization” of the stem cells – this is your first dose of chemo. Then, as an out patient, you give yourself neuprogin injections to help stimulate the stem cells to keep flooding the blood stream. Then a week later, you get “harvested” – your stem cells collected, much like plasma pheresis. Then you have a rest and recup time, then into the hospital for 2 1/2 – 3 weeks. This is when you get the high dose chemo. That is what kills/cures/puts into remission the autoimmune disease, but since it basically kills your immune system, your stem cells are given back to rescue your immune system. After that it is just a matter of waiting on counts to come up, then you can leave the hospital and go home.

There are several options for staying in Chicago. You can ask Paula (Dr Burt’s nurse) about them. There is a “Home Away from Home” program that is a charitable organization that will fund 2 nights/year in a hotel near the hospital for anyone undergoing any type of transplant. I used them for my stay during my 1st evaluation and it was a very, very nice hotel. There is also the Worster House which is student housing. You can apply for free housing there. It is not fancy (think back to a dorm atmosphere) but has all the essentials you need. I stayed there for my 2nd evaluation. Also NW has negotiated “medical” rates with some of the nice hotels/suites in the area. I stayed at one (now gone private) when I was in Chicago for the long haul. I had trouble walking due to pain, so used a wheelchair to get around. Everything is really close and within walking distance for normal folks! There are options there also and you can rent a scooter or use taxis as they are pretty cheap.

You can get support while in Chicago – Paula can also help you with options. While in the hospital, the only help I needed was with laundry. I did have someone with me the entire time, but it wasn’t really necessary.

If insurance doesn’t cover it, the cost is about $125k. Most I know that had to self pay, did have insurance pay some (about half). But I don’t know much about that as my insurance did pay. One friend who did this a month after me was self pay. She and her husband are organizing fund raisers to make it more accesible to those that cannot afford self pay. One man, sold his house and all his belongings and moved his family into his in-laws to pay for his wife’s sct (she had MS). His reasoning was that he can always get another house … but his wife is irreplacable. There are also fund raising internet sites that can assist.

But first things first … I wish you luck with this. If you want to talk to me directly, friend me on fb (CIDP and Stem Cell Transplant – Linda Martin) and we’ll exchange information. I don’t know if this site has the pm feature anymore – I cannot seem to locate the mail box I used to have here? Anyway, folks helped me, so I’m ready to pay it forward!