Note: Should you wish to see photos for each individual ACUTE GVHD ISSUES, please see the individual posts in April 15, 2012.
It is often believed that Acute GVHD happens within 3 months of the stem cell/bone marrow transplant, and Chronic GVHD anytime after that. Well, if that was a fast rule, then we’d know everything about GVHD and that would be it! Well, not so much.
See, not much is known about GVHD, no matter if it is Acute or Chronic. A lot more research needs to be done to fully understand why some people have it and some don’t. It has all to do with the T-Cells (not going into details on that one as it is far too complicated at this point). Some people have one or the other form of GVHD, some have both, and some have a slight case for a short period of time, then nothing ever again.
A little GVHD is always good as it means the new immune system works. However, sometimes the new immune system never really settles down and constantly sees the host’s body as something foreign and constantly attacks it (my case). Some have it in a life threatening form (Ta Da! That would be me as well – ain’t that Special!) Every one is unique and reacts differently. There is no way to predict how someone’s body will react to a stem cell/bone marrow transplant, whether it is a related or non-related allogeneic donor.
So here goes. I have had the ‘regular’ multi organ Chronic GVHD (excessively dry eyes, nose, mouth, throat, GI tract, Skin GVHD, liver GVHD…) since August 2011. So, I pretty much got used to living that way. Not pleasant, but you’d be surprised what you adapt to.
The when I relapsed with the Richter’s Transformation in January 2012, things got complicated and since I had to stop the immunosuppressant drugs and steroids I was on, which was somewhat keeping everything in check, my new immune system (donor’s) began attacking me with Severe Acute GVHD.
This is when all hell broke loose. I began experiencing a more severe form of dry mouth and throat, and my digestive system was getting worse as well as I was beginning to have severe diarrhea. Swallowing pills, food and drinks were quite challenging and I was beginning to have massive shortness of breath. Not to mention an inability for my body to absorb nutrients.
I had not been able to eat solid food since mid-January 2012 and was losing a considerable amount of weight, not to mention breathing was challenging. So I called my friend Monika and on February 11, 2012 we made our way to the emergency. A BMT doc was waiting for me but unfortunately I fell through the cracks of the system and was ‘followed’ by a generalist for a few days, which might have delayed an appropriate treatment for me. So be it, you cannot change the past.
I was admitted in the general population ward on February 12. Acute Mouth GVHD began.
Here are some of the ACUTE GVHD that have kept me hospitalized for this long…and still dealing with it for more than 2 months now. When will it stop? Your guess is as good as mine and the doctors’ right now.
So let’s do this chronologically as it developed for me. Please remember that there was some overlapping with the ACUTE GVHD issues along with the ongoing Chronic GVHD which is still ongoing since August 2011.
The doctors would increase the amount of steroids to deal with one issue. As they would begin to taper off the steroids, then another ACUTE GVHD would develop. And of course, you can’t rely on GVHD issues to have the decency to allow one problem to be dealt with before another one arose. So it was a constant battle of finding a balance in dosage.
In the meantime, you also have to realize that the once Chronic LIVER GVHD has always been a huge problem since Transplant in February 2011. Therefore, every meds, every treatment, every increase in steroids, antibiotics, anti-fungal, anti-viral, immunosuppressant meds affected the liver enzymes and gradually made it worse where it became the biggest life-threatening issue of them all.
The LIVER became life-threatening ACUTE GVHD as soon as they began treating me for all the other ACUTE GVHD issues. This has been the most challenging for the doctors and the scariest for me. It gave me an insight as to what I could possible die of other than the Lymphoma itself. It became so serious that the aggressive, life-threatening Richter’s Transformation (lymphoma) became secondary.
ACUTE SKIN GVHD
Around January 18, 2012 I began experiencing skin GVHD where my skin began getting really itchy and looked like I had a sunburn on my chest.
It gradually began spreading over my entire body and felt like it was constantly crawling with ants along with the sensation of an extremely severe sunburn. Blisters began appearing in my hands and in between my fingers. Eventually, I began having brown spots all over. Thankfully, not that it mattered much, I was lucky enough that I never had any spots on my face itself. There were some on the side of my neck and head.
I had topical steroid cream that I applied twice daily but it was efficient only for a few hours. It felt like chicken pox and drove me insane.
The one thing I never realized, is that when it got better, the spots sort of sloughed off. Again, very similar to a sunburn. I would just rub my skin and the surface area would just come off like dirt.
As my eyes were getting jaundiced from the elevated liver enzyme, I admittedly had a more ‘leopard’ look. Not so much what I would say attractive but funny enough.
As soon as we began massive doses of steroids for other GVHD issues, the skin GVHD subsided. The whole episode lasted about 1 month (mid-January to mid-February 2012).
ACUTE MOUTH GVHD
The Mouth and Throat issues began gradually around mid-January 2012. The Dry Mouth and Throat Chronic GVHD which I had been able to adapt living with since August 2011 was worsening. Eating, drinking and swallowing was becoming an issue. It felt like my throat was closing in and I was having more difficulty eating and swallowing. I ended up losing close to 20 lbs in 1 month.
My tongue was swelling up and sores were forming in my mouth lining, including over, under and around my tongue, gums and throat itself which made eating solid food almost impossible. Talking was extremely difficult.
This was one of the main issues that made me go to the Emergency as I had lost a lot of weight and could no longer eat solid food.
My mouth and throat kept worsening and eventually it moved on to the lips and I could no longer eat or drink without massive pain. The lips and entire mouth became so swollen that I could no longer eat, drink, talk, take meds or have anything at all touch my lips. The lips were in such a state that I had to mash my meds and food in some liquid and use a syringe to put the meds down my throat. The lips were so severely swollen and excessively painful that they began bleeding and sloughing.
Naturally, since I was unable to eat or drink, the dietician and doctor’s kept proposing that if things did not improve I might need a feeding tube. Various options were proffered, from TPA which is nutrition through an IV line, or a feeding tube through my nose, or even at one point they considered a feeding tube in my stomach. Now, all these options would have fed me however they all had counter-active effects as well, some of which would/might have caused long-term stomach issues, which needless to say was not appealing to me.
They knew I was in a lot of pain and kept offering morphine which I kept refusing. In my mind, this was a localized issue that could be assuaged with topical mouth freezing mouth washes. Therefore, whenever I needed to swallow something, I would profusely rinse my mouth with a lanacaine-like mouth wash, which would freeze and numb my mouth, lips, tongue and throat and I would force down whatever needed to be swallowed.
I was closely followed by the BC Cancer Agency Oral Oncology dentists and they were great at helping me find solutions that did not include morphine or feeding tubes.
They initially had me on a ‘liquid’ diet, which for a hospital means Jell-O, ice cream, artificial, plastic tasting ‘juices’, and for some obscure reason cream of wheat!!!! Cream of wheat considered liquid is beyond my comprehension.
But all that food was fake, sugary, lacking any nutrition whatsoever. I can’t believe they actually think that can ‘feed’ someone who needs nutritious and healing food.
Then they tried ‘puréed’ food which again, ridiculously enough to them was to take whatever was on the menu, such as a tuna salad, or egg salad sandwich, whole shepherd’s pie, or quiche, and put it in a blender. I also got puréed bread with a side of apple jelly (where exactly do you put the jelly?). That’s when I had to take charge and asked to see a dietician so we could come up with proper food.
Come the end of February I decided to take matters into my own hands and began ‘supplementing’ the hospital food (which sucked and did not meet my needs) with organic foods, without preservatives, ascorbic or citric acid. This ensured that I could eat somewhat more nutritious than the mass-produced, re-heated, preservative-laden disgusting food. See, hospital food I guess can be tolerated short-term but when you become a ‘long-term’ resident, it becomes detrimental to one’s healing process.
In the meantime, I was determined to keep good healthy oral hygiene and the quest for toothbrushes began, I realized that a baby toothbrush was the only thing that I could fit into my mouth, and even at that, I still had to ‘freeze’ my mouth in order to be able to brush my teeth.
That whole ACUTE Mouth & Throat GVHD lasted for approximately 1 month (end of January to the end of February 2012).
ACUTE GI TRACT GVHD
Just a few days before I came into the Emergency, I began experiencing severe diarrhea which I concurred was probably due to the fact that I had not had a solid meal since the end of January.
However, as soon as I was admitted to the hospital (February 11, 2012) I began having some blood in my bowel movements and severe cramping.
Since I was on high doses of steroids for the Mouth & Throat GVHD, it somehow maintained the GI GVHD under semi-control. But when we began tapering off the steroids when the Mouth & Lips got better by the 3rd week of February, the GI TRACT ACUTE GVHD went absolutely berserk!
A few Sygmoidoscopy later (think lower intestinal colonoscopy) where each time they would confirm GI TRACT ACUTE GVHD Grade 3 (there are only 4 grades), they still couldn’t figure out why it was lasting so long, just that it was.
In fact, the only positive thing about severe GI Tract GVHD was whenever I would get a scope, I always expressed my fear of making a mess due to the frequency on bowel movement and abundant blood. It made them move their butts on getting the exam done and me back in my room in no time. See, nurses are used to cleaning up messes, but docs and technicians – not so much! LOL
The bowel movements were almost every hour on the hour 24/7 for the end of February, all of March and began getting better at the beginning of April. Think about it, 1 and a half month of heavy bleeding, gut-wrenching cramps and 2 E-Coli infections because blood was seeping through the intestinal lining.
The first case of E-Coli infection was confirmed on March 7 and took a few days to clear. This time around, it was diagnosed on April 8th and seems to be a little more difficult to get eradicate.
See each time, it goes into the blood stream, the GI Tract of course (which is where it originates), but this time it also went into my bladder. So as soon as it goes into the blood stream then I need to lose my central PICC line which is where they give me all my meds. So without my PICC line, it means that I needed to have multiple peripheral IV lines. The main issue with that is that my veins are excessively fragile and an IV line would only last a few days and burst. I had to have several IV lines in the course of a week. My arms are just covered in massive bruises.
On April 9th they removed my PICC line (the second one by then) and I finally got clearance to have another one put in on Friday, April 13th. Best Friday 13th present ever. But I digress.
So this GI TRACT GVHD also meant that I was put on a very strict diet of bland, no spices or flavouring, no dairy, nothing more than 2g of fiber, low-fat, low sugar, no preservatives……. Which if you think about it is pretty much the opposite of hospital food. So here again, here I am supplementing with my own food. So far, I have spent more than $200 on food to be able to eat something my GI GVHD could handle. The hospital Kitchen seems unable to handle my special needs and are constantly screwing up. If I did not supplement with my stuff, then there would be many meals I would not have food at all.
The same goes for toilet paper and wet wipes. Imagine, I have excessively frequent bodily function evacuation (urine & bowel movements) which has been on-going for 1 ½ month, so think cheap sand-paper commercial toilet paper on your touchie and how painful that would be. So yes, I buy my own expensively soft toilet paper and wet wipes to try to be as gentle on my skin as I can. Again, there goes another $200 in miscellaneous purchases.
So my long-term stay in the hospital is becoming more than physically and morally taxing, it is also financially quite expensive. Perhaps I should do some fund-raising just for my own personal needs. And don’t forget, not because I am hospitalized long-term that the home and personal bills stop accumulating. Bills need to be paid no matter what. They don’t care that I’m fighting for my life.
On April 11, the GI Tract Specialist came by and after further examination, along with the physical evidence itself, the GI Tract ACUTE GVHD seems to have subsided. This would have lasted almost 2 months total, with various degrees of severity along the way.
For those of you who want to have a ‘feeling’ as to what it was like, if you have ever travelled and have had traveller’s diarrhea for a few days or a week? Multiple that by 2 months, with an average of 15 to 25 bowel movements a day and add an extensive blood loss each day, and that my friends is ACUTE GI TRACT GVHD.
I don’t wish this on anyone.
In order to be able to deal with all the various ACUTE GVHD issues since early February, many high dosage of steroids and meds were given. Unfortunately, lots of different steroids at high doses also means that I am extremely immunocompromised and contracted a lung infection around the end of February. I began coughing on a regular basis and eventually it turned more into a wet wheezing. As it progressed, I began having more and more shortness of breath.
Early March, my best friend Lynn from Montreal paid me a surprise visit which was incredible. On March 5th, as she was leaving, I was well enough and was given an hour to allow me to go see her off in the lobby. As I made my way back up to my room, I realized I was completely out of breath and excessively dizzy. The nurses examined me and realized that my oxygenation was way too low. I was immediately put on oxygen. Subsequent Chest X-Rays, Chest CT Scans and Bronchoscopy showed that I had a lung infection. I was on oxygen for a few days in early March.
They couldn’t however tell what type of infection, whether it was fungal and/or viral. Therefore, they had me on all sorts of anti-fungal, anti-viral, and anti-biotic meds. Again, all this was meant to treat the lung infection, however, all these meds were/are contributing to the elevated liver enzymes.
Everything I ingest, all the meds, all the steroids, must somehow be balanced out in consequence of the excessively elevated liver enzymes. As soon as I take meds that make the liver worse, then it all has to be readjusted.
Then on April 8th, after a day of fever, they confirmed I had pneumonia in my left lung. Again, various antibiotics are given in the hope of getting rid of this. Thankfully, I am no longer on additional oxygen which is a good thing.
I still wheeze a bit and there is still a little crackling in my lungs so that is not yet all cleared up.
ACUTE STEROID MYOPATHY
Mobility Issues & Fluid Retention
In early March I began noticing that I was having difficulty getting out of lower chairs. I was beginning to lose balance and fell a few times going to the washroom, My legs would just give out like a rag doll and I was unable to get back up on my own. We thought most of it was due to the engorgement of extra fluids in my legs caused by the long-term high doses of steroids. We were right about the cause, but realized that it was the beginning of Steroid Myopathy.
Progressively over time, I began losing more and more muscle mass and became unable to support my own weight. I became completely bed-bound in early April.
I have provided a description before, but to reiterate, Steroid Myopathy is muscle weakness due to prolonged use of high doses of steroids. The weakness is progressive but reversible, getting worse the longer on steroids but gets better when the steroid dose are reduced. Recovery can take weeks or months and some weakness may persist, but most people recover completely. In severe cases, there may be a little weakness that never goes away.
Steroid Myopathy mostly affects the ‘proximal’ muscles, which are the muscles in the hips and thighs, shoulders and upper back. It also seems to affect unused muscles more than muscles that are active. The forearm and lower leg muscles are less affected but they can also begin to feel weaker as the myopathy progresses.” Info given by VGH Physiotherapy
At this point, I am doing physio therapy on a regular basis to try to regain some of the muscles. It is a long and painful process but I do see progress on a daily basis.
However, this loss of mobility and having to rely on the nurses for all my needs is very difficult morally, emotionally, not to mention physically.
They literally have to do everything for me. I need a bed basin for bowel movements, the nurses are the ones having to prop me in bed, clean me up, get things for me…. We need to use the lift to carry me around the room for a shower, or to sit me up in a chair. Ok, that part is not so bad as it reminds me of paragliding. LOL
Unfortunately, they had to remove the catheter I had as the E-Coli was present in my bladder. Therefore, everything ‘foreign’ that can cause an infection was removed from me. The same way the PICC line had to be removed a while back because of the E-Coli infection in my blood, the catheter had to be removed because of the infection in my bladder.
But I did come up with a system for my urinating needs. I used to do a lot of backcountry camping and have a ‘funnel’ system I used when winter camping. Therefore I have that beside my bed and am able to urinate relatively on my own without having to have the bedpan every time. Bedpans hurt and the effort it takes for me to constantly roll over back and forth in bed and being physically ‘boosted up’ in bed is exhausting.
I urinate on average every 1 or 2 hours so that takes up a lot of my time and energy. It does make me ‘workout’ 24/7 but it also means sleep deprivation.
ACUTE LIVER GVHD
Ok, here is the biggest, most serious, most life threatening issue for me.
Now a ‘normal’ liver has a Bilirubin level of approximately 15. My levels have climbed as high as in the 140’s. This is very serious. If you reach anything close to 300 then you are in total liver failure, you slip into a coma and die.
Therefore, every time my liver enzymes climb, due to anything, either meds, steroids, infections…. It is always a very serious condition.
Although the levels are still wildly fluctuating, it seems to be on a downward trend which is fabulous.
It doesn’t mean I am out of danger as I still have various infections coursing through my body and organs, but the liver seems to be cooperating a little more which is great.
Yesterday, April 14, the Bilirubin was at 60 which is fabulous. It doesn’t mean it can’t go back up but right now, it’s a positive sign.
The other liver enzymes are also still fluctuating and the Gamma GT (one of the enzymes responsible for bile) is excessively elevated which is what gives me jaundiced skin, especially my eyes.
EFFECTS OF HIGH DOSES OF STEROIDS
So I have extensively spoken, explained, demonstrated the nasty side effects of high doses of steroids (affects liver, fluid retention, loss of muscle and body mass, puffy moon-face, etc.) Some of them are also the fact that they have caused me to become diabetic. So I need to have my blood sugar tested 4 times a day. I get one long-lasting shot of insulin on the morning, then as needed for each meal.