Cruising with unwanted teenage punks

So much has happened since I updated my blog two weeks ago, I apologize for not being more diligent about updating it for those of you who still might be reading it! 

First off, turns out that the GI upset I had experienced during and after Thanksgiving was not a flare up of my GVHD of the gut and instead it turns out I have Norovirus.  It took a week for test results to come back but long story short, the highly contagious virus that has been known to shut down entire cruise ships made it's way into my gut. :(. In a healthy individual, Norovirus lasts hrs to a couple of days and makes you very ill (many people believe that they have food poisoning when hey in fact have Norovirus according to my doc).  In an immunocompromised person like myself, the virus can stick around for months because my body has no way of fighting it off because my immune system is suppressed by meds on purpose to keep my GVHD under control.

What is really interesting is that the treatment for Norovirus in transplant patients is exactly opposite of the treatment for GVHD, so when we had originally thought my GI upset was related to a GVHD flare up, the doc increased my steroid dosage (wanting to suppress my immune system even more in an attempt to squash the GVHD process.  Instead, once we learned that I had gotten Norovirus, he needed to get me off the high dose steroid in order to allow my body to be less immunocompromised and fight the virus a bit more (but my doc still needs to keep me at a "therapeutic level" of immunosupression to avoid the chronic GVHD of the gut and skin that I have had over the past 4 months so it's at very fine balancing act.  The good news is that I get to pretty rapidly taper off the nasty high dose steroids that I have been on for the past 2 months since my hospitalization in October!  I am very happy about this as it will help my sleep, muscle weakness, and blood sugar issues that were all nasty and unwanted side effects from the steroids I had been taking.  Bad news is that since it will take my body a few weeks to clear all the steroids and then I will still remain immunocompromised it will take several s'more weeks-months for my body to fight the Norovirus and I could very likely continue to have symptoms of Norovirus :(. 

At least we now know what the issue is and my doc knows how to treat it and we are moving forward with that!  He said it is complicated and there isn't a lot of research or information in the evidence-based medical journals about BMT transplant patients who have GVHD of the gut and also contract Norovirus, but that it happens (even to the best of us:) lol and he has treated many folks with my same issues.  Makes me so thankful that I have a doc who has 30 years experience in this complicated transplant oncology business and specifically the GVHD complications that come with the process!  I love Dr. Nash!  :).

The other thing that I recently had to deal with was a scare with a bloody nose that started last Saturday and wouldn't stop.  We took Scotty to see Santa at one of our local garden centers that had advertised pictures with Santa and also had live reindeer.  It was FREEZING (literally) here in Denver last week and last weekend, and I think the cold dry air mixed with my irritated mucous membranes throughout my body (thanks GVHD:), caused my nose to start bleeding when I rubbed it (it was itchy when we went from the super cold to the warmer tented area that had those big space heaters to see Santa in his sleigh with Scotty. 

I've had on and off nosebleeds throughout his process (after transplant, a few during the summer and a few in early fall, but nothing like this one).  All of the other nosebleeds I had, stopped within half an hr or so.  This time around, it wouldn't stop because my platelets continue to be low (it has been since October when they started me on the supplemental immunosuppressant).  I was also taking a blood thinning medication because of the blood clot in my arm from the PICC line they put in while I was hospitalized in October.  Long story short, this was a nosebleed that wasn't going to stop/clot with home treatment because my blood was so jacked up. :(. I realized the seriousness of the nosebleed after trying to treat it at home for several hrs with minimal success...ended up calling the on-call doctor at the clinic and he instructed me to come to the ER affiliated with the clinic...so I drove downtown to the ER and they had to "pack my nose" in order to get the bleeding to stop.  Very unpleasant experience if I do say so myself.  Even more, I had to leave it in for several days to ensure that the bleeding would stop since my body was still trying to clear the anticoagulant medication I had been taking.  Having something shoved into your nose and then inflated like a balloon to create enough pressure to stop blood flow in a vessel is not fun.  I had a headache behind my right eye and sinus all weekend from the pressure of the balloon thing they put in my nose.  :(.   Finally got my nose unpacked on Tuesday and wouldn't you know it, the sucker continued to bleed (although much less) and the Doc who unpacked my nose said that is very common for it to continue to "trickle" because when they unpack it, it partially dislodges the clot that had formed while it was packed.  LOVELY! :(. I must say, I was not a happy camper when I was sent homes till "trickling blood" and told that "it should stop in the next few hrs".  They sent me home from the ER with a nose clamp and some nasal spray and told me, it should be fine in a few hrs but to come back if it didn't stop and they would have to repack it!  I was upset and frustrated seeing bright red blood coming from my nose again (even in smaller amounts...seeing blood coming from your face is scary no matter what the cause)!  Thankfully the "trickle" stopped around midnight (can't tell ya how nervous I was to take the nose clamp off each time to check it every couple of hrs once I was home, but my prayer and the prayers from family members and a few close friends who knew what was going on Tuesday night were answered and it stopped while I was propped up sleeping sitting up on our couch.  Hallelujah! :). I have been trying to be EXTREMELY careful not to touch, rub or itch my nose since then and have a referral to see an ENT specialist who might be able to cauterize "the bleeder" as I am affectionately calling my little nose blood vessel that acts like a teenager who likes to throw unwelcome parties (nosebleeds) in my nose! :) lol

So, I have been dealing with the cruise ship stomach bug (minus the actual vacation/cruise), BUMMER!, and a blood vessel in my nose that acts like a punk teenager throwing unwanted and disruptive "nosebleed parties".  I am over it! :) lol

Bright side is that the nosebleed is under control for now, I am off the anti coagulation meds (did an ultrasound of my arm on Wed and doc said it was reasonable to consider ending the blood thinner since there wasn't much evidence of the clot still).  I chose to weigh the risk/benefits and he agreed to stop the Coumadin.  (I am really happy about this progress off of this medication because blood thinning meds in addition to my low platelets freak me out and those meds scare me in general!  They were causing me to bruise randomly, etc...no fun.

The other nice thing is that I am aggressively tapering down on the steroid medication so that means that my sleep should improve...SO looking forward to that!!!!

So, that is a glimpse into my world over the past two weeks and why I have been so busy (have had clinic appointments much more often, still doing daily IV infusions (4hrs each time) through a new PICC line to ensure that I can absorb certain essential electrolytes and then dealing with the nosebleed/blood lot issues. 

Despite nearly every other holiday/birthday/special day (anniversary) being affected by my health issues this past year (seriously, when I think about it every holiday has been messed up by chemo, feeling sick, being admitted to the hospital, GVHD flare ups and Norovirus, I am praying for a "calm Christmas".  We are hoping to go down to my parents cabin for a few days and spend some time with them just relaxing and enjoying the holiday.  So far, I am on track and Dr. Nash has said I can go (if you remember, we tried to go down to the cabin in September to celebrate our anniversary and ended  up having to come back the next day because of my skin GVHD).  So, any prayers/thoughts/juju/vibes you can and want to send my way that we can spend a relaxing few days down there for Christmas would be greatly appreciated!  I would love more than anything to just simply spend the holiday with John, Scotty, and my Mom and Dad...in their cabin down in Pagosa.  It's something I have been looking forward to all year and really hope to make a tradition for Scotty (Christmas at the cabin).  Someday (probably way too soon) he will be old enough to enjoy building a snowman, sledding, and learning to ski/snowboard down there at Wolf Creek... I am looking forward to those years but this year, I simply would love to be able to start the tradition and relax down there for a few days with my family, drink hot chocolate by the fire stove and snuggle up on the couch with my boys while we watch the snow fall out by the river!  Two more weeks till then, and I am really hoping things can stay on track so we can make the trip! :)
-Chellie

Life on board the roller coaster of recovery

Haven't written in a while, and that was because I was so busy with life.  Holiday baking, Christmas season prep, clinic appointments, spending time doing all of my physical therapy, medication taking, spending time with my boys in the evenings when they got home, etc. :). Well, unfortunately things have slowed down to a snails pace again and I have have had to hit the brakes due to a flare up of GVHD again.  :(

I had been feeling much better until Wednesday evening when I came home to find John was violently ill with some sort of stomach issue (we now think it was food poisoning but at the time I was extremely worried it was the stomach flu).  I got home from a late clinic around 6pm from a late appointment with Dr. Nash and immediately had to take over supervising Scotty so John could take care of himself (felt terrible that I wasn't able to devote all of my care to him!) as he was so violently sick.  It was a rough evening in the Voss house on Wednesday night to say the least.

 

Thankfully, neither Scotty or I "caught" anything from John (again, why we are now thinking he had food poisoning), and he felt better the next morning (Thanksgiving)...however I think the stress of having a violently ill husband, worrying about possibly catching the stomach flu and having to take care of Scott all by myself when I am still so weak that I can't even carry him upstairs myself caused my body to become overly stressed and that in turn caused a flare up in my GVHD.  (This is my theory based on many conversations I have had with one of the on-call docs at CBCI the past 2 days.

 

On Thanksgiving morning John woke up feeling better and I started experiencing some lower GI symptoms (very similar to the beginning stages of my last GVHD flare up that required the 17 day hospitalization back in October.  We cancelled our Thanksgiving plans to go down to Pueblo (despite the fact that I had done TONS of cooking for the meal on Wednesday) :(. And we stayed home so I could rest and be near the clinic if necessary.  By 12pm I had to call the on-call doc who I was afraid was going to tell me to come in immediately.  Thankfully, I had seen this doc several times and he knows me.  I explained everything and he said that we should try to increase my prednisone (steroid) dose by 10mg and "wait and see" if that helps a bit.  I wasn't having any nausea/vomiting or pain, so he wasn't too concerned at that point because I had only been symptomatic for about 6-7 hrs and he thought we might be able to "kick it" with an extra 10mg of prednisone).  He told me to wait 24 hrs and see how things go (of course calling back if I started vomiting or any major new symptoms came up).

 

Unfortunately our plan didn't work.  By Friday early afternoon I was no better (despite resting all day long and sending John and Scotty down to Pueblo for a belated Thanksgiving meal (thanks for delaying your Thanksgiving by a day Judy, Kate, & Anne, so that Johna me Scotty could join you guys!).  When I talked to the same on-call doc late yesterday afternoon he said that he thought it was time for me to come into the clinic to be seen by a doc because he was worried about the fact that I could be getting dehydrated and not be absorbing very important medications correctly with all the GI upset I was experiencing.  Of course, I just had my PICC line removed about 12 days ago, so I have no IV access right now and that took one of our options for home hydration fluids off the table immediately.  The doc informed me that the clinic was closed and that he didn't think it was severe enough for me to go to the ER... But that he wanted me to come into the office for their "after hrs/weekend" clinic first thing on Saturday AM and he mentioned bringing a bag packed just in case they decide that they have to admit me to the hospital and switch my meds over to IV and ensure I am hydrated and getting the replacement electrolytes my body needs (many of my meds cause my body to "dump magnesium and potassium" which are really important to nerve and heart function...and if levels get too low you can have seizures and all sorts of scary stuff can happen).

 

I agreed with the on-call doc that I didn't need to go to the ER (but I would if I started vomiting) and he agreed that our best course of action was an 8am appt at their "weekend clinic on Saturday morning...with me coming packed for an admission (just in case).  I must admit, I bawled big alligator tears when I got off the phone with him despite the fact that I know he is just trying to make sure that I am okay and ensure that we catch this  as early as possible this time around.  I was terrified of being admitted and having to be away from my boys for weeks again!

 

I got to the clinic at 8am as instructed this morning and the on call doc I had spoken with last night had already texted the nurse in charge to expect me first thing this morning.  They drew tons of labs and within a few minutes of getting results I saw the medical director who happened to be the on-call "clinic" doc this weekend (different doc than I had talked to on the phone).  He assured me that we could do this outpatient....at least through the weekend (whew) despite the fact that they pulled my PICC line 2 weeks ago.  He said that he wanted to "slam me with 2 massive doses of high volume steroids and shut down the GVHD flare up if possible so I am here at the clinic getting an infusion for 4 hrs of extra magnesium/potassium/fluids (because I am dehydrated) and 120 mg of steroids.  I had just tapered down to 20mg and was starting to feel like myself again (sleeping a little better, muscle weakness was getting better) and now I am back up to 120.. But if we can manage it this way and keep me out of the hospital then I am willing to put up with the side effects again.  This dose will cause me to be diabetic again (I had just "graduated from glucose monitoring and insulin injections last week) but have to start them again as soon as I get home this afternoon!

 

I will have to come back into the clinic again tomorrow morning at 730 am to get the same thing (4 hr infusion of fluids/electrolytes and massive dose of steroids).  Thank The Lord for the weekend clinic and the nurses who work the weekend hours that allow this as a possibility because otherwise I would be upstairs on 4B admitted to the hospital for the exact same thing but I wouldn't be able to leave and come back in tomorrow!  I am so relieved that Dr. Matous, the medical director, was willing to do it all outpatient this weekend as he easily could have just said, let's  admit ya and do it that way...but he knew how important it was to me to be home with my family.   He is leaving it up to Dr. Nash on Monday, when I come back in for my regular appointment, whether or not to admit me to the hospital but hopefully by then we will be able to arrange getting a more permanent IV access/line put in again and I will be able to do the infusions over 6 hrs at home instead of coming into the clinic for 4 hrs everyday and there won't be a need to admit me to inpatient! :) I really don't want another PICC line (because it cause so many issues with the blood clot and was a total pain in the rear to deal with) but I will take that in a heartbeat over having to go back into the hospital!

So for now, I am sitting in the clinic downtown waiting for my first infusion of the weekend to wind down.  I have about an hr and 45 minutes left before I am cut free to return home to my boys.  I will gladly bring my hospital bags that I had packed back into the house and breath in the smell of baby shampoo from Scotty's hair when I get home and just say a thank you prayer for allowing me to be home tonight with my family!  So grateful to Dr. Matous for realizing how important it is for me to be home with my boys and how emotionally upsetting it is for me to be away from them when I was in the hospital a month ago.  He is such a compassionate doc and I love how he just makes it work for his patients! 

I will be back at the clinic bright an early (7:30am) for the same infusion tomorrow...and with all the steroids I got today, I definitely won't be sleeping much tonight...so I plan to make some homemade breakfast/baked goods to bring in to Dr. Matous and the weekend clinic nurses.  I have been trying to decide if I should make fresh blueberry blueberry muffins with crumb topping, overnight cinnamon rolls with my favorite light fluffy cream cheese frosting, or if I should do something like homemade bagels, fruit kabobs, and coffee.  You know me, I love to bake and with 120mg of steroids in my system this afternoon, you can bet my little kitchen will be busy tonight while the rest of the house sleeps peacefully and will wake up to the smell of something delicious probably just as I have to walk out the door @630 to make it downtown and to the clinic by 730 to start my infusion tomorrow. :). 

-Chellie