Chris' journey to end his multiple sclerosis by undergoing a hematopoietic stem cell transplantation at the Ottawa General Hosptial. This blog will show his entire treatment and all the highs and lows along the way.
Chris' progression over the last six months. Top left: Chris looking healthy at the beginning of
August. Top right: Chris not long after his first dose of Cyclophosphamide in October.
Bottom left: Chris one month post-transplant (January 13). Bottom right: Chris at his IVIG
transfusion (January 30).
Chris went in to have his IVIG yesterday. It was our first time in the Medical Day Care unit since he had his stem cell collection back in October. The IVIG is used to help immune recovery after a bone marrow transplant and can also help prevent infection. We were told that it isn't crucial, but when they started this study on MS patients ten years ago they incorporated IVIG transfusions into the protocol. Since they are trying to keep all of the MS patients on the same treatment plan, Chris will get these transfusions every month for likely the next six months. At the same time we were told that if we need to delay a transfusion because we are going away for a weekend or have important plans, it is not a big deal.
The first transfusion was a breeze for Chris. The only possible side effect was headaches and Chris didn't even get that. His only real complaint is that he is seriously getting sick of needles. Taking into account that Chris was getting two needles every hour for some days while in the hospital, we think that he may been poked over 500 times during this procedure. A consideration for anyone thinking about doing this procedure, be prepared to have a lot of needles.
A lot of the nurses that work in the Medical Day Care unit also work in the unit that Chris was admitted to (5 West). A bunch of the nurses recognized Chris and commented on how much better he was looking (we included some photos that show Chris' progression.) They also relived some of Chris' finer moments. I don't know how much Chris likes being referred to as the patient that had "those weird reactions to the drugs" and having some of the nurses joke about his drug induced escapades. I, however, enjoyed it thoroughly.
So it looks like it will be awhile before we blog again.
Chris went in for his doctor's appointment yesterday and he moved from once a week appointment to once a month. He is recovering really well and as long as he remains negative for CMV, he can continue to have monthly appointments and monthly IVIG treatments. Chris' second IVIG treatment will be in February, but we don't have the day yet.
His doctor really emphasized that Chris needed to start doing some cardio. The problem with it being the winter (it was -30 this week) is that it is really unappealing to go outside. I have suggested that shovelling the driveway is great cardio, but I don't think he is buying it.
Chris's white blood cell count was down on Tuesday: 5.4 This is still in the normal range, but not as shockingly high as before.
Platelets: 150, which are now in the normal range. I can now go back to punching him when he says things that make me mad.
Chris still has not shown any new signs of his MS. It was around this time last year that we realized how bad Chris' MS was becoming. We had gone skating on the Rideau Canal, Canada's largest outdoor skating rink and Chris for the first time was unable to skate. Chris had played hockey for ten years. He had even taught me how to skate on our first date. But when we went to skate that day he was holding on to me for support. He fell pretty badly a few times and we ended up giving up halfway and taking a cab back to our car. It was after that day that we became obsessed with figuring out a way to stop this from progressing more. It's crazy to think the difference a year can make.
It was also nice getting Chris' results. Chris tested negative for CMV in his last test. He will still need to stay on his anti-virals and continue to be tested once a week for the next few months, but it was a relief to know that it is under control for now.
We also asked about Chris' high white blood cell count. They told us that there was a chance that his high white blood cell count could quite possibly be due to an infection. But as long as Chris continues to not have a fever and is feeling well, we don't need to worry about it. Unless Chris' white blood cell count spikes outside the normal range, we don't need to worry about anything.
It is also possible that Chris just has good bone marrow. He is young and other than his MS really healthy, so maybe he really is just really good at growing stem cells and white blood cells. I guess everyone has a talent.
It's a good thing that Chris is doing better because I am unfortunately back at work on Monday. As terrible as this procedure has been, it has been a nice little honeymoon spending litterally all day every day together (minus a two day break) since we were married. Even though I am working from home, it will be an adjustment for Chris and he is taking suggestions for a new hobby to help pass the time.
Chris got an X-box Kinect for Christmas, and he started doing some "personal training" with it yesterday. He lost a lot of muscle during the procedure. Shirts that use to be really tight around his arms are now really loose. He was only able to do bicep curls and shoulder presses with 5 lbs weights when he was doing 30-35 lbs (40 lbs on his good days) before the treatment. He did a ten minute workout routine and was sore the next day. It was still a huge difference from a few weeks ago when he would get winded going up the stairs.
We are back at the hospital on Tuesday for another check up and blood work and Chris will need to schedule his IVIG. He gets this treamtent once a month (he had it on Day +7) and it helps prevent infection and boost the immune system.
Chris' counts were up today. Way up. Shockingly high.
Platelets: 100 (150-450 is normal)
We were just hoping for him to be over 50, so that he would start his new antibiotic.
Hemoglobin: 118 (140-180 is normal)
And Chris' WBC is....drum roll, please....8.6
That's insanely high.
Now, we got these results over the phone, so I am not sure if this spike is normal. We have read other people's progress online and no one seemed to have a spike like this. While I am sure that if that number was troublesome, we would be notified about it or be going in to the hospital again, a high white blood cell count usually means an infection. I also learned (thanks to Google) that pregnancy in the final month can also be linked with heightened white blood cells, so this could support my earlier theory that I think Chris is pregnant ( he was getting morning sickness and tired all of the time).
Speaking of infection... we thought we would find out today if Chris had responded well to the new anti-viral he was on and if his CMV levels were down. Well it turns out that while they conducted the test today, we don't learn the results until Friday.
Now we are waiting another three days to find out what the next steps are. This was the bad news.
To help pass the time Chris is having another MRI tonight at 10:00 pm. They wanted to check to make sure that his abscesses healed, and that he doesn't need any further surgery. Chris has been over pain medication for about a week now, so we are really hopeful that he was able to fix himself.
So what do you want first? The good news or the bad news?
Okay, let's go with the good news first. At Chris' appointment today, we found out the culprit behind Chris' constant night sweats and possibly his bladder problems.
Next, I will give you even better news. It is not a urinary tract infection. His tests came back negative.
But here it comes, the bad news. Chris tested postive for the Cytomegalovirus (CMV). Now, you may remember that I mentioned this virus earlier this week when I attempted to explain that Chris was more susceptible to infection because of his specific stem cell transplant. Well I spent the day learning a whole lot more about it.
So what is CMV? Well chances are at least half of you reading this post have this virus. Approximately 50 to 80 per cent of people have this virus by the time they reach 40. However, it normally presents no symptoms in healthy individuals. You can have it your whole life and never know. It is part of the herpes family, which includes chicken pox, shingles, mono and yes, herpes. Similar to all of these viruses when you contract this virus, you have it for life, but the disease can become dormant. It can be reactivated, and this can happen after a bone marrow transplant. It can also cause problems for people who are immunocompromised.
Chris either had this dormant virus prior to the transplant and it was reactivated after the bone marrow transplant or it is possible that I gave it to him as CMV is commonly spread by kissing. I have yet to rule out that Chris hasn't been secretly kissing other girls with CMV, but I will save this for another blog post.
A CMV infection may attack different parts of the body, such as the lungs, eyes, stomach, kidneys, and possibly the bladder. The common symptoms for CMV are: fatigue, loss of appetite, night sweats, weakness, swollen lymph nodes, muscle aches, and fever. For immunocompromized patients, CMV can attack the specific organs and cause a whole bunch of problems where it is at. This has yet to be determined for Chris.
Right now we don't have to worry too much. Chris tested positive, but his level of the virus is still not serious yet. His level was 630 and the serious level is 1000. I didn't think to ask what a normal or safe level was or what this level was measured in, so I am sorry if these numbers don't really shed that much light. All I know that at this point, Chris is now taking a new, stronger anti-viral ( Valganciclovir ) to try and fight the infection.
There are a few different scenarios that could happen moving forward.
1) My personal favourite: Chris' CMV levels will be down considerably on Tuesday (or next appointment) and we will conclude that Chris' immune system in addition to the new anti-viral drugs will have beat this virus.
2) Chris' levels will be slightly up next Tuesday. This could mean that the level had continued to rise since Chris CMV test this past Tuesday, but had been brought under control by the anti-viral. We will need to continue to have two appointments a week to monitor the virus.
3) Chris' levels will be much higher on Tuesday and possibly close or at the 1000 level. At this point Chris would need to have an intravenous anti-viral administed twice a day for two weeks. We could arrange to have this done at home, but this is obviously not the scenario we are hoping for.
This, of course, was a little unsettling to hear. Chris was a little relieved to find out he had the virus. It can be really frustrating to have symptoms, especially ones that keep you up all night, and not have an explanation. Having an explanation, a virus that has a treatment means that his doctors know why he is having these symptoms and also how to stop them. When you have MS there is always a fear that when you get a symptom that there is a chance that it may never go away. CMV may never go away, but at least it can become dormant and Chris may finally get a good night's sleep.
Chris is now officially one month from his transplant.
Chris will our pill suitcase. We could pretty much open
a pharmacy right now.
He is doing really well. Much better than we could have imagined one month ago. However, Chris is having a hard time now that his improvements are not are noticeable and aren't as rapid. He still becomes incredibly tired after even walking up the stairs and is still having these strange hot and cold flashes. He is either boiling hot and sweating or freezing cold and shivering.
But he is now completely off his pain killer. An amazing sign since doctors orginally thought that Chris would contiue to be in pain until he had surgery. Now it appears that he won't need to undergo any surgeris.
He is also off anti-nausea medication and is only drinking one Ensure a day (he was drinking about three before).
One of the things that Chris is finding hardest is the house arrest feel of this recovery. If he does leave the house, he needs to avoid areas that have a lot of people. And even if we do the leave the house, he is usually too tired to stay out very long or even go out at all.
In terms of how his MS is right now he is pretty stable. We haven't seen any signs of improvements (completely normal at this point, and we may never see any improvement), and we haven't seen any signs of relapses or progression. It's too bad that there isn't a test you can take that will tell you if you are cured. We do want to continue to update this blog on Chris' MS condition to see how successful this procedure was .For right now we are just focused on Chris' recovery.
Speaking of which, we are back at the hospital again tomorrow, so we will be back with another update on his recovery tomorrow night!
We were in at the hospital again this morning. It looks like Chris may have another infection.
Luckily, this time it does not appear to be anything serious. Last night Chris was up all night (and because Chris does not like to be awake alone, I was awake too!) because he was getting pretty intense night sweats and chills. He also felt like he had a full bladder, but didn't have to go the washroom no matter how many times he tried. However, he didn't have a fever and or any scary symptoms such as back pain or trouble breathing. We made it through the night and called the hospital first thing in the morning. Coincidentally, Tuesday is the day Chris would have had to go to hospital if he needed to have two appointments a week (maybe this is a sign). Since today was a "clinic day" for the bone marrow transplant team, Chris was able to get in really quickly today.
The problem du jour? Likely a urinary tract infection. They put Chris on antibiotics for a week. They ran a bunch of tests on him to see if he had a bacterial infection or a viral infection (I didn't even know you could have a viral bladder infection).
We also learned that Chris will need to start coming every Tuesday since he needs to a have a specific blood test done (a CMV) that detects viruses, which not all bone marrow patients require. MS patients that undergo a bone marrow transplant are actually at a higher risk for getting a virus since they only receive specific stem cells (CD34) during their stem cell transplant. You may remember when we talked about the stem cell collection that MS patients normally need twice the amount of stem cells because they are later cleaned to remove the T cells. Okay, I am not the greatest at explaining this because I don't fully understand it. Basically, MS patients are at higher risk for viruses because they don't get all of the stem cells back that regular transplant patients receive.
We did get Chris' blood counts
White blood cells: 3.1 (this was his counts today and last Friday, which means that they remained stable for four days!)
Platelets: 36 on Friday and 41 today
They also brought up that Chris may also start another antibiotic (the one that we mentioned in the last post) even though his platelet levels are still not high enough. The risk of him getting another infection is much more important than the risk of lowering his platelets. The reason he is on this specific antibiotic is because even though Chris is not part of the clinic trial, they are keeping all of the MS patients on the same protocol.
Essentially, just when we thought Chris was going to start taking less pills, we had to make another stop at the drug store. However, it was far less traumatic than his last infection, so I will glady make the trip to Shopper's Drug Mart.
More good news today! I could certainly get use to this.
Chris' appointment was problem free. He was even doing so well that they switched him to only one appointment per week.
His only issue was that his platelets were still really low. Normally he would be starting an antibiotic that prevents pnemonia, but the drug, Septram can decrease platelet counts.
They decided to hold off and start the drug next week when Chris' platelets are hopefully much higher.
We don't have his other counts back yet, but we were told unless we had something to worry about, they wouldnt' be calling us about them.
At the appointment, Chris' doctor started going over all of the infections that we had to worry about Chris catching, including pnemonia, shingles or meningitis. Sometimes I think they wait for you to start getting cocky about your health, before they mention all of the other things that you can look forward to.
I am a little depressed tonight. Not because anything is wrong with Chris, but Canada just lost in the World Hockey Juniors. The first thing we did when Chris got out of the hospital was watch the first game of the tournament. Sorry, I am getting a little nostalgic here (and off-topic).
Today we are actually finding it hard to write a blog post. Aside from the whole depression thing, not a whole lot happened today. We didn't go to the hospital, Chris didn't get any blood tests and he didn't get any transfusions. He didn't even pull any of his stunts when he comes up with some strange symptom that he doesn't mention until the the main hospital office closes for the day.
We defintely took advantage of the day off. Chris even left the house and we went to a few stores with me today. He is finding his fatigue to be getting a lot better and he is becoming a lot more independent. We have been surprised with how fast he seems to be getting better and feeling better.
However, we have decided that we probably start blogging a little less often so that we only post when we have news to share. Chris will have a doctor's appointment on Friday, so unless something major happens tomorrow, we will be taking a day off from blogging too. We will be sure to post on Friday to show how Chris is progressing.
No news is good news and that certainly applies to Chris' health too.
Chris became a free man today. He was finally discharged from the hospital and will now only need to visit the clinic.
It's funny how fast things can move now that the holidays are officially over. They had already decided to discharge Chris by the time I had parked the car and came upstairs (okay, I also picked up a coffee on the way.)
Since everyone was back from Christmas break, we got to see a lot of doctors and nurses again that we hadn't seen in a few weeks. Coincidentally, the nurse we had today was the same nurse Chris had on the day of his transplant. She went away for the holidays not long after that and was gone for the entire time that Chris was sick. It crazy the difference a couple of weeks can make.
Dr. Atkins was also back today and stopped by to talk to Chris about the future. After being discharged Chris will start visiting the clinic for the next year and they will help arrange for his vaccinations when it is time. After he is done visiting the clinic, he will have another appointment with Dr. Atkins and with the MS clinic at the hospital. They will then continue to do MRIs on Chris to monitor his progress, approximately every 6 months. Dr. Atkins said that it was just like any other patient that has a bone marrow transplant. They follow them for the rest of their life to make sure that their disease does not come back. Until more is known about the long term success of this treatment, it is really important to monitor Chris' recovery in the long term.
The other big decision was the removal of Chris' PICC line. As soon as they brought this up, Chris was pretty much convincing them that it was a good idea to take it out. After having a better blood pressure and Chris promised to continue to drink lots of liquids, the doctors agreed with Chris and they removed the line. The big advantage? Chris used to have to saran wrap his arm, wear a towel and arm bag on his arm every time he had a shower to prevent his PICC from getting wet.
While Chris' blood pressure was better, they decided that he needed to have a platelet transfusion. His counts were 19, which aren't horrible, but they did go down again and they wanted to boost him up before he went to the clinic.
Chris had received platelets before when he was in the hospital; however we weren't sure if he would have a reaction. Each time he had the platelet transfusion he was already sick and had a fever, so it was hard to notice any new symptoms. It turns out Chris does get a reaction from platelets. Nothing major. He temperature just a rose a bit (no fever) and he started feeling cold and shaking. His nurse just paused the transfusion and injected him Benadryl and gave him some Tylenol to stop the reaction. I am convinced Chris just wanted to scare me before he got discharged.
Chris' other counts were also down slightly again:
I am now convinced that Chris will never be discharged. Another day at the hosptial today and they decided that they still want Chris coming in daily.
He was feeling much better this morning, kept his breakfast down (although it was only an Ensure) and despite feeling tired, he had no complaints.
On a side note: I am also convinced that Chris is pregnant. His three biggest complaints: morning sickness, extreme fatigue and just feeling uncomfortable all the time.
However, they still pumped Chris full of hydration and booked another appointment for tomorrow. The decision was in part due to the fact that Chris will need home care for the first little while, and since it was a statuatory holiday today, their office was not open.
Another side note: For anyone considering this procedure, if you have the option to not do this during Christmas break. Aside from the obvious issues (no turkey, no family and no Santa in the hospital), there is a lot of staff changes over holidays and some services, such as home care are closed, which can slow down the transition process.
The home care service will take care of Chris' PICC line, which will remain in for the next little while and give him hydration until his doctor is satisfied that he is drinking enough and keeping everything down.
Chris' counts were doing well today:
White Bloode Cell: 2.9
Platelets: 23 This is the first time they have gone up naturally (i.e. not after he received a platelet transfusion)
When we first left the hospital, we met with the team's social worker to talk about how Chris would be doing over the next few months. She mentioned that it would likely be hard to see daily improvement, and that it would be probably be weekly improvement. However, we have been noticing some pretty big differences in Chris each day. He was much more awake and alert today. While he still gets winded going up our stairs, he is now awake for a good part of the day. We also keep seeing nurses that took care of Chris as recent as a week ago, and they all seemed impressed with his improvement.
And while we have been bragging on this blog that Chris did not lose all of his hair on his head, we realized today when we were trying to put our finger on why Chris still looks really sick, that Chris' eyebrows and eyelashes have thinned signifcantly. He also shaved when he came home from the hospital over a week ago and he has yet to grow any stuble.
Today we hoped that Chris would be discharged, but unfortunately we will back at the hospital for at least another day.
Chris had a low blood pressure, so they needed to pump him full of liquids this morning. It made sense because he was getting really dizzy whenever he stood up. Some of his other counts seemed low, including his potassium, so his doctor wanted Chris to come in tomorrow.
They were not overly concerned with this new development. Chris was so tired yesterday that the only real meal he had was dinner. He didn't get out of bed until after lunch and all he wanted then was ice cream. He napped until dinner time and then went to bed after that. He also was not able to keep his breakfast down this morning, so they just told us told us to make sure that Chris was eating and especially drinking a lot. Even if this meant waking Chris up just so that he could eat and hydrate.
I, of course, took this personally and spent my day making sure Chris was drinking and made another run to the grocery store to stock up on a variety of liquids. I felt a little bad waking him up to eat and drink (but only a little).
Chris' other counts were doing better.
White bloods cells were up: 2.8
Platelets were stable after falling for days: 19
Hemoglobin was only slightly lower: 108
And we didn't get his neutrophils today.
The other good news is that Chris didn't feel as tired today. He was able to stay up to watch the entire World Juniors game when Canada beat Switzerland. And while he had a few naps throughout the day, he was able to stay up to 11:00 pm ( a new high).
Hopefully this means Chris will pass all of his tests tomorrow.
It was a nice start to the year with a day away from the hospital.
Not surprisingly Chris spent the majority of the day sleeping. He really wanted to stay up to watch the Leafs-Senators hockey game and the Winter Classic, but could not make it to the third period.
We mentioned yesterday that we wanted to reflect a little bit on the procedure. One of Chris' nurses asked him not long ago if this whole transplant was worth it. He responded very confidently, "Oh yah, definitely." If this procedure is able to stop Chris' MS progression, and possibly reverse some of his symptoms, it was worth the terrible month he has had.
However, we both admitted that this procedure was far worse that we had imagined. Chris joked early on this would be a "walk in the park." It was far from that. It really is the worst month either of us have ever experienced. While Chris had to go through it all, he doesn't remember much. I remember everything, but have no idea what it was like for him.
We skimmed over a lot of the really horrible parts of the procedure in this blog. The main reason for this being that we did not think it would be fair for our close friends and family members to read such painful accounts of Chris' life online. We didn't want anyone to panic or be scared for Chris. Also, since Chris was not exactly "with it" during this procedure, I did not think it was really fair for me to disclose information that he might not like being made public.
Chris was in a lot of pain due to the infection that he had early on. His doctors actually think he may have had it before the actual transplant while he was having chemotherapy. The pain was so bad that he was on a lot of pain killers, which included morphine. Chris ended up having a terrible reaction to the morphine that actually made him delusional and at some points a little violent. Even when he was taken off the morphine, he was so heavily drugged that he became completely reliant on his nurses and me to help him do anything. He couldn't even get himself out of bed and sometimes was not sure where he was.
It was a little bit ironic at the time. Chris became completely helpless and dependent on others. But the reason we were doing this procedure was to stop his MS and prevent this from happening.
However, not all of the delusions were upsetting. He was often entertaining and on more than a few occasions he had me and the nurses in hysterics with his different antics. I remember on one occasion looking up at him while I was lying on my cot and saw that he was eating something off his stomach. I was worried that he was eating something that had fallen on his bed, but he told me not to worry, "I am just eating cheese." Sure enough he continued to eat imaginary cheese for a few minutes and then fell asleep. But when his cheese omelette arrived at lunch later on, he said he couldn't eat because he wasn't really craving cheese anymore.
For anyone that is considering this procedure, we just wanted to be clear that while we think it is worth it, it is extremely hard.
It is definitely not a "walk in the park", but it sure beats the alternative. If everything has worked according to Chris' doctors’ plan, Chris will just have to worry about getting better and not have to be concerned about getting worse.