Hi everyone,
Rosie and Fran are home. As always, it’s horrible seeing them leave. There is no better time then the present to talk about the next few weeks.
*****Please note that I am taking some of this from my knowledge, some from Jen’s experience, some from the patient manuel on Dr Burts website, and some from the great friends (sisters and brothers of HSCT) who have been there for me every step of the way.
Tomorrow, I have my Picc line inserted onto my arm. This is like an IV with 3 or more tubes coming out of it. It will allow the doctors and nurses to administer chemo, drugs and take blood. This is basically how it works.
Then, Wenesday AM, I will be admitted for about 3 weeks to have my transplant. So, what happens:
Starting tomorrow, it’s all about the transplant. We count days based on that. So Tuesday, March 31st will be my Day -6. First I am going to give you the Colleen version, then the official version
Tues = Day -6: Picc line inserted via outpatient.
Wen = Day -5: My 6 bags of stuff and I (it’s not as bad as it sounds, I bought pillows and temperpedic bed mats – anyone in Chicago for HSCT when I get out is welcome to them and the other bunch of stuff I’m leaving) will be admitted into Prentice Woman’s Hospital in Chicago. That day I will get. Chemo, rATG (an auto-immune suppressant ) , Mesna, Lasix (to flush the chemo out of my bladder as fast as it can and prevent serious bladder damage) IV steroids (to make me shed tears like a crazy person) and a bunch of other meds to keep the bad side effects at bay. I also get a return visit from Pee Wee the cathater and the “let it be”anal swab. It is what it is = IIWII (new acronym for you)
Thurs = Day -4: Repeat of meds from Day -5
Friday = Day -3 Repeat of meds
Saturday = Day -2 Repeat of meds (Last day of chemo)
Easter Sunday = Day -1 Repeat of meds minus chemo and God willing Pee Wee goes home.
Monday, TRANSPLANT DAY aka DAY 0 = now, remember, these are my stem cells so I won’t have the scare of engraftment issues like we feared with Jen’s AML transplant (none thank God). I do risks side effects from what they use to treat my cells, so I will be monitored closely.
A dear family friend Joe will be working with the priest who has been in my life for every enormous event that has ever occurred. He buried, christened and married loved ones, memorialized my Jason and Dan (years later blessing their burial when we received remains), he christened my daughter. My Aunt Rosanne asked Joe to coordinate with Father Bill to FaceTime me and bless me and my cells over facetIme. It just wouldn’t seem right to me to have it any other way.
Days +1 and on: From this point on, it is all about the numbers and counts. Since the chemo had destroyed my immune system, we have to wait for it to grow back enough for me to safely leave the hospital and GO HOME. They predict this will be somewhere around Day +12. Now, if anyone has a private jet they can send my way, that would be great. Lol
Now, Here is the edited patient handbook version
TREATMENT REGIMEN
The teatment regimen has been specifically designed to treat my disease. It will consist of high dose chemotherapy and other immunosuppressive medication to suppress my immune system. In autoimmune diseases such as MS, chemotherapy is used to kill the immun cells that are causing the disease and may be damaging vital organs such as the lungs, brain, kidney, etc. In both instances, these treatments will also kill normal cells that grow rapidly such as hair follicles, cells in the gastrointestinal tract (mouth and rectum), and bone marrow.
During chemotherapy, damage to my normal cells may result in side effects. The severity and type of side effects vary from person to person. Major side effects include nausea, vomiting, diarrhea, hair loss, and suppression of bone marrow function. Nausea, vomiting, and diarrhea can be controlled with medications. Hair loss cannot be prevented, but hair will re-grow in six months after the end of treatment. Bone marrow suppression is usually the most serious side effect of the treatment plan.
The bone marrow is responsible for making red blood cells (RBCs), white blood cells (WBCs), and platelets. After treatment, my blood counts will be low while I am waiting for my new bone marrow to “engraft” or begin producing new blood cells. Until this occurs, I will receive blood transfusions. The point of. This is to basically replace my existing immune system with a new one that has no training to attack my own body.
Will this cure my MS? No, it, God willing, will stop the disease progression without the need of other disease modifying drugs. That is what my hopes are for.
A fellow HSCTer generously allowed some of us to use their analogy. It’s my favorite. (Not giving credit because I wasn’t sure you wanted to be called out)
Common question: Will HSCT make me feel like someone who has never had MS?
Answer: No.
MS is the equivalent of a hundred drunken teenagers throwing a party in your home while you are away. HSCT will clear the teenagers out, have them locked up so they can never come back, and possibly even clean up a lot of the vomit and trash. It WONT repair significant or structural damage like the broken chairs, the smashed windows, or the holes in the wall.
That, unfortunately, is a permanent remnant of the party (at least until we have re-myelination treatments like MSCs – or better -available after HSCT).
Last thing: So many of you have asked me if I will have restrictions in the hospital. OH YES!
1. Fresh flowers or plants are not allowed in your room because of the bacteria and mold they contain. Silk flowers and silk plants are allowed as long as they do not have moss at the bottom.
1. Balloons are not allowed as they attract dust.
2. Fresh fruits or vegetables are not allowed in my diet because of the bacteria and mold they may contain. Pepper is also not allowed. Cooked food from home is allowed as long as it is stored properly.
3. Staff and visitors must thoroughly wash their hands before touching me. Handwashing is known to be the most effective means of preventing the spread of germs. Staff must also put on gloves before touching me or anything used in my care (e.g. IV poles, blankets, etc.).
4. Visitors must wear masks if they have been exposed to colds. No one with a cold or temperature should come to the hospital, because I will be more susceptible to infection, even a mild case of the flu in a visitor could make me very ill.
5. You must wear a mask and gloves if you leave your room.
6. Hospital visiting hours are from 11:00 AM to 8:30 PM seven days a week. Visitors must check in at the main lobby desk and with the 15th floor secretary
7. No visitors should use my bathroom. All visitors are required to use the guest bathrooms located on the unit because of infection control guidelines.
Key points for the first 3-6 months..
- Stay away from large crowds. Avoid movies, shopping and restaurants during highly congestion times.
- Avoid any contact with sick individuals, dust, construction sites, yard work, new animals, new plants and food that might be contaminated (salad bars, blue cheese, deli’s etc)
- Enjoy your pets but wash your hands after handing them and avoid cleaning up after them.
- Avoid sick children if your situation allows. Of course, many patients are parents. We advise you to wash your hands often and make sure children or members of the family get treated if they are sick.
- Limit travel during the first 3-6 months. Any international travel to underdeveloped countries requiring immunizations is not encouraged.
My MS Trials 