Accidental Caregiver

Having a chronically ill mom can be tough, but inspiring. 

What is a Stem Cell Transplant?

We recently launched the GoFundMe page for my mom, Susan Kiechel. She has been accepted for a stem cell transplant (SCT), a treatment that could reset her immune system, and make it so that she no longer needs to do the monthly treatments of IVIG.

The SCT is expensive (the quote we were given is $153,154). I know there are going to be a lot of questions revolving around what SCT is, how is it done, and can it really save Susan. I will address these possible questions below.

What are stem cells?

Stem cells are undifferentiated cells that are able to become specialized cell types. They can come from embryos, or adult tissues. The kind Susan would use for her transplant are adult stem cells. Adult stem cells can be found in many tissues such as the brain, bone marrow, blood, blood vessels, skeletal muscles, skin, and the liver. Susan’s transplant will extract the stem cells from her blood using a process called apheresis.

What is a stem cell transplant?

Susan will receive an autologous Hematopoietic Stem Cell Transplant (HSCT).

HSCT is a treatment where a patient’s own stem cells are collected from their body. After extracting stem cells, the patient undergoes chemotherapy, which eliminates the patient’s immune system. The stem cells are then injected back into the patient. Stem cells have the ability to become any kind of cell, so they sense the lack of an immune system, and change themselves to become the new immune system for the patient. Basically, HSCT destroys the immune system, and helps the body regenerate a new one.

What is the typical timeline of a stem cell transplant?

Everyone’s stem cell transplant can be a little different. The general timeline of a transplant falls into 5 phases. There is a phase before the inpatient procedures begin, called Harvesting. The patient is scheduled for a procedure to have an apheresis catheter inserted into one of the major veins that feed towards the heart. Over the next four or five days, in an outpatient clinic, the patient receives daily injections of a bone marrow stimulant, which encourages stem cells out of the bone marrow and into the bloodstream. After each injection, the catheter is used to harvest the stem cells. In some cases, a low dose of chemotherapy is used to coax more stem cells out of the bone marrow. When sufficient stem cells have been collected, they are cryopreserved until they are needed for the transplant.

Then the 5 phases of the transplant begin:

Phase 1: Conditioning

This phase starts from the first day of hospital admission to “Day 0” (the day the transplant occurs). The patient receives chemotherapy to suppress the immune system. The chemotherapy is a very high dosage; the goal is to eliminate the current, dysfunctional immune system.

Phase 2: Transplant day to Engraftment

This phase starts from Day 0 (the day you get the stem cells) to engraftment (when your stem cells start to do their job and your blood count recovers). At this point, the patient is very sick. Their white blood cell, red blood cell, and platelet counts will be low. They are at an extreme risk of infection and are kept in isolation because of this. Blood transfusions may be required during this time. This phase usually ends (and engraftment starts) between 10 and 30 days after the stem cells are implanted.

Phase 3: Engraftment to day of discharge

This phase starts when engraftment starts. The stem cells start to do their job, and the patient’s blood counts will recover and gradually increase. This is when the healing process really begins. Phase 3 ends when the patient is stable enough for discharge.

Phase 4: Early Convalescence

This phase starts at discharge and ends around a year after the transplant. The patient will be in a much better situation but is not quite out of the woods yet. Their blood counts will be recovering, but the immune system will still not be working properly, and thus, the patient is still at an increased risk of infection. They will be closely monitored and have to take a variety of medication to help prevent infection.

Phase 5: Late Convalescence

This the last phase, and it starts about a year after the transplant, onwards. The patient’s immune system will be almost fully recovered. The patient may begin receiving vaccinations they may have had as a child to help the immune system grow stronger and create the antibodies your body needs.

With Susan being so sick, it is quite possible this timeline may be extended, as her body may struggle more getting through the treatment. The above timeline also doesn’t factor in the outpatient procedures necessary to prepare Susan’s stem cells.

Is stem cell a cure for CIDP and other autoimmune diseases?

Since I am not a medical professional, I certainly cannot call it a cure. However, recent studies (2) (3) have shown that it is very successfully for similar autoimmune diseases. I think the more important thing to note is that it is Susan’s only option left. Her current treatment requires her to be inpatient in the hospital for a week. She does this every 28 days. The drug they use, IVIG, only slows the disease, and does not stop it. IVIG is very hard on the body, as it strips out the vitamins and minerals her body needs, and in Susan’s case, it induces meningitis (swelling of the brain/spinal cord). Susan is not only in excruciating pain every month, she also faces a risk of death every time she goes for her monthly treatment. If stem cell is successful, Susan would never need to do IVIG again.

What exactly will stem cell do to Susan? Will she regain her ability to walk, feel, etc?

The goal we want to accomplish is that Susan will never have to do an IVIG treatment again. If that happens, but she stays in a wheelchair, we will be fine with that result. That said, it is possible for a stem cell transplant, paired with physical therapy, to help a patient regain functions, such as the ability to walk. Unfortunately, stem cells cannot become nerve cells. However, they can repair the myelin sheath around the nerves which were damaged by the disease. If the underlying nerve cell has not died, it will begin functioning again. However, Susan has 18 years’ worth of damage done to her nerves. I would love if she could walk again, but our main goal and focus is stopping the CIDP from progressing further.

Where can I find more resources about stem cell transplant?

I stumbled upon this article, which is an amazing guide about HSCT, and what to expect. It is probably the most complete and easy to follow resource regarding HSCT.

What can I do to help Susan get the treatment she needs?

We currently have a GoFundMe for Susan, to help pay for a stem cell transplant. Please donate and share, so she can finally live a normal life.

Sloan Kiechel