I’m not going to lie this is not a topic that I actually planned to write a blog post on, but a friend of mine in the HSCT world has realized that these issues are the dark side of HSCT and mentioned to me that these are things that ARE NOT TALKED ABOUT AT ALL IN REGULAR HSCT GROUPS and are rarely discussed in much detail on HSCT Veteran Groups either. This person wondered why that is when so many HSCT veterans battle this in silence and mentioned that somebody needs to discuss this publicly so that everyone can learn about this prior to HSCT and for those that have completed the process to realize they are not alone if these issues are happening to them. And I know exactly why this is rarely discussed on regular HSCT groups, flat-out it is because all of the groups are heavily censored and posts that discuss the bad things that can happen after you receive HSCT are often deleted and the poster is banned from the group. There are huge numbers of HSCT veterans that have been deleted from most regular HSCT groups and many have also been banned from the veteran’s groups as well. It’s sad, but not surprising. But it also really sucks for those looking to undergo HSCT because they do not get the truth and they are often lied to about what to expect after HSCT.
So to start out, life after HSCT can really suck, massively. The first few months after you return home can be complete and utter hell. You have undergone chemo which is essentially toxic chemicals being pumped into your body and boy can that do a number on your mind and body. With HSCT you receive large amounts of chemo, I mean it wipes out your entire immune system, so it’s potent stuff, so of course that leads to consequences later on. In some regards I do think the chemo does affect those with MS or those with brain lesions worse than those who do not have brain lesions, because the chemo can cause more damage to the already damaged areas in the brain which can lead to more disability for a while afterwards.
Most people have heard the term chemo brain. If you look at any cancer or chemo related website or blog you will see the term. What exactly does that mean? Well it is different for everyone. For some it causes cognitive issues, known as cog fog in the MS world. For others it causes emotional issues where people cannot control their emotions at all. Perhaps they will have horrible mood swings, violent tempers, crying outbursts and just be an emotional wreck. It can cause vertigo, balance issues, vision issues and for quite a few people they do not feel that they are safe to drive for months afterwards. Everyone is different.
Chemo also causes problems with the rest of the body as well. It can cause joint pain, muscle pain, bladder issues, kidney/liver/other organ issues, and basically can cause all sorts of things to happen or go wrong until the chemo is fully worked out of the body. How long does that take? Well that is up for debate, but the common consensus by doctors is most of the chemo is out of your body around 6 months later, but residual chemo can hang around for a couple of years. But the damage caused by the chemo can last for weeks, months, years or be lifelong. Basically it can change you mentally and emotionally for life, it is a risk you take when you undergo HSCT.
But back to the topic at hand: depression and anxiety. Will it happen to you when you undergo HSCT??? Yes, most likely it will, but the severity of it really varies so much across the board. One thing that I did learn from the HSCT Veteran’s Groups before I was booted from them was that many people battle depression prior to undergoing HSCT. Which is completely understandable. MS and other autoimmune diseases suck and it’s hard for anyone who doesn’t have one to understand what you are going through. Many people have lost tons of friends over their diagnosis, marriages/relationships have ended and you also lose the ability to do many things you did prior to being diagnosed. Many people are isolated and feel alone, this leads to depression. And I do fully realize that anyone can battle depression, often times it is the most cheerful and happy people out there that secretly are battling depression, you just would never know it because they put on a fake happy persona when they are in public and around others. I personally have known several people who committed suicide who were battling depression, nobody had any idea how bad it was for them until they decided to end their lives. I have friends that battle depression now, it’s a tough thing to deal with, and sadly it’s something that is massively overlooked in society and nobody wants to deal with it. I’ve seen friends that battle depression comment about how people constantly tell them to just suck it up and get over it, but there is more to it than that, it is not that easy.
So why do so many HSCT veterans battle this issue after they return home. Well it can be a number of reasons why. As I said above many people battled this issue prior to undergoing HSCT and then after undergoing chemo and the whole procedure they end up dealing with it even worse. Honestly I think perhaps people should have to undergo a mental/psychological evaluation prior to receiving HSCT to ensure that they are mentally able to handle the procedure itself and the recovery process. I have seen several people proceed to have HSCT that discussed prior how they felt hopeless and should just end their lives, a couple of people were cutters prior to going, those people battled severe depression after returning home and pondered suicide. One dropped off facebook completely after receiving treatment and nobody has heard from them since.
But one major thing that really causes depression and anxiety after returning home is the fact that you cannot come home and go back to living a regular life right away. You have lost muscle mass, you are weak, you are tired, you may have sleep issues due to the residual steroids, you cannot go out in public without taking precautions, you can’t eat certain foods, you have to be super careful about germs and you just aren’t yourself. It also doesn’t help when friends and family assume that you are back to be a normal healthy person and then they constantly ask if you are cured and often times are baffled when you explain that it’s not a cure, it is just something that halts progression. But the fact is for most people you just will not be your old self right away, typically you don’t start feeling more pre-HSCT normal until about 3-4 months post-HSCT. Then around the 6 month mark is when you really feel more like you did prior to treatment. But for some people it takes them a full 1-2 years to feel like they did prior to HSCT. And that sucks, especially for those that had a lower EDSS score prior to treatment, you cannot really live your old life until you get to a certain point after treatment. No matter how much you push yourself if your body isn’t ready, you can’t rush it.
Then there is always the question you have in your mind, did the treatment work? Any old symptom that pops up makes you wonder, is my MS or other AI condition back? And the first few months home, all sorts of old symptoms pop up, many you may not remember, another reason to make a list of every symptom you ever had prior to having HSCT so you can see what all you dealt with in the past. That can really bring you down and cause horribly anxiety as well as depression. Then you also see patients who have these so-called amazing recoveries where they went from being in a wheelchair to running within the first month or two. While some of these stories are real, many are fake. Many people have made up fake online personalities with amazing stories to promote HSCT, many make money off their youtube channels or websites and love the attention. But you also have the people who flat-out lie on facebook groups and talk about how easy their HSCT was, how they had zero side-effects, how everyone should do it right away, how it cured them and they have no residual MS symptoms at all anymore. These are the same people you can be facebook friends with and see their struggles with the treatment and recovery and what they actually are going through is nothing like the happy amazing stories they post about on groups. It is very misleading. And I’m not saying that is always the case, there are some people who have had amazing recoveries, treatment was easy for them, recovery was a breeze, and they are back to going things they did before they ever got diagnosed with MS, it’s all very individual. But it goes to show that you cannot believe everything you read online. But all of this does make the new HSCT veterans feel depressed if they are not seeing these amazing transformations. They question if the treatment worked and if things are normal because they feel like complete and utter shit and have no desire to exercise and really just want to curl up in bed and sleep for a month. Typically those with higher EDSS scores don’t see a ton of improvement after HSCT like those with lower scores do and I think many expect to not just halt progression, but also plan to see a lot of improvement. Any improvement is an added bonus and not guaranteed, but a lot of people have seen the amazing stories and assume that will happen for them, and unfortunately that is just not the case most of the time and when they get home and don’t see much in the way of improvements they get depressed and feel the treatment didn’t work.
Also HSCT has led to the demise of many marriages and relationships. Most likely the HSCT itself was not the cause of this, but it probably was the breaking point in many relationships. For some it is because the spouse/significant other of the patient feels that the person undergoing HSCT is now cured and will be back to normal in no time, and just doesn’t want to deal with the whole recovery period and everything that goes along with it. For others it is the patient themselves that ended the relationship, after they have recovered a bit they now feel great and decide to move on from their relationships. Then of course you have stories of the spouse that stayed at home during the patient’s treatment that cheated and then promptly ended the marriage. I think it is probably a good thing to evaluate your marriage or relationship prior to undergoing HSCT and determine if it will be able to weather the storm of it all, because the end of relationships/marriages has caused serious depression in some patients and led them to just not care about their recovery. And this scenario happens way more often than people post about in the groups. A friend of mine who underwent treatment last year overlapped treatment with 8 other patients that they became friends with, most were in relationships of some sort prior to HSCT, at the 6 month post HSCT mark, 4 of those relationships ended. It happens and it’s real and it’s not something anyone wants to deal with during the recovery period, because that causes a lot of fucking stress, which we all know stress is not a good thing with any AI disease.
The problem with depression and anxiety after HSCT is the fact that people do not want to talk about it at all. It is basically a taboo topic. The first few months people are home are the worst and many people cannot handle it on their own. For those people who really struggle with it, medication may be needed, and while many people look at taking medication as being a failure, if you need it to keep your sanity, by all means take it. See a therapist if needed, reach out to friends, reach out to other HSCT veterans that have been there and done that before. Just don’t be afraid to talk about, because you are not alone.
Pretty much everyone planning to undergo HSCT says this will not happen to them, most will say they are not the type of person that will have this happen to them, but the whole experience and especially the chemo can totally change you. I know in my group when we were getting ready to leave Russia, we were like almost everyone else who has left treatment, we were all so optimistic of the future, leaving there free of our MS and ready to take on the world. A bit weak from treatment, but ready to get on with life. But then you get home and reality sets in. You realize you are weak and can’t do a lot of things that you want to do, and then around 4-6 weeks later the steroids really wear off and then you just crash, and then the side-effects of the chemo become apparent. And the chemo fucks with your brain big time, everyone will admit that. But then when old symptoms pop up and hang around for several weeks and you feel like absolute shit, you really question if the treatment worked, was the hell you are going through really worth it, and all that fun stuff, it really can make you super anxious or depressed. It can get crazy. Then any sign of feeling sick makes you incredibly paranoid and you wonder if your new immune system can handle it, will you need antibiotics or need to be hospitalized. Then for some people they really don’t want to socialize with others during this time, they prefer to be alone at home and then become somewhat isolated, which can lead to depression as well. Some people really get hit hard with depression and others have no issues at all, but it is very common and something that should not be overlooked. I personally didn’t battle depression after returning home, but at times my anxiety was a bit high. For me it went away on its own, but for a while it was crazy, as I have never battled anxiety at all pre-MS. MS itself gave me some anxiety, but the recovery time really messed with me.
So for those planning to undergo HSCT in the future, this is not a post to try to scare you. But this is a topic that is not discussed much at all and it should be. Recovery is hard. My first year after HSCT hasn’t been all too bad compared to other patients, recovery is so very different for everyone. But be prepared for this and make sure you have someone there for you that you can vent to if needed and that will support you regardless of what happens. And honestly if things get too bad, seek some type of help, whether it is seeing a therapist or medication. Medication for depression and anxiety have been literal lifesavers for some people, if you need meds, take them. These things are not worth messing around with. But recovery is hard, it is far harder than the actual treatment, so don’t make it harder on yourself, reach out for help if you need it.