I will be honest though: whew I was stressed. The combo of the meeting we had Tuesday coupled with having his infusion was just a LOT for me. We had assumed he wouldn't have his first infusion until after he met with a local hematologist. They found some protein in his blood during his labs from his first Shepherd Visit and we were told we needed to be seen by a hematologist. Turns out they still felt fine moving forward with the infusion even prior to the hematologist seeing us (which is a good thing b/c those people STILL haven't gotten Zach in.). I was very thankful for Zach to get in for his first infusion so quickly, I just wasn't expecting it so it all threw me for a bit of a loop!
Prior to our meeting...looking like a stud in that suit
G-Mama took Tess to her first swim lesson of the season (we do a little refresher in winter to be ready for summer).
The Tuesday meeting took foooorrrrreeeevvvverrrrr. We didn't get to Atlanta until almost 8 and were starving. We hit up a local Mexican place and it did NOT disappoint. Zach got mad at me for hogging the cheese dip but it was irresistible ;)
One of the things that is tricky about Zach's infusions are that they are every 28 days. In Atlanta. It's hard because traffic coming into and out of Atlanta is HORRIBLE. Hotels near Shepherd are also crazy expensive. We can't afford for him to be staying in a $150 night room once a month! We debated trying day trips but with Atlanta traffic being as bad as it is, it just doesn't make sense. We have many friends and family who live north of Atlanta but he'd be fighting traffic just as bad as he would be if he drove up from home. If Shepherd was just a little bit south or even a little bit north it'd be so much easier.
Thankfully I have had a HUGE outpouring of sweet friends who happen to live very close to Shepherd! They have offered guest rooms and couches and we are so, so thankful. It's a bit awkward for Zach as he's more introverted (if it was just me traveling solo yall know I never meet a stranger and would totally bunk up without awkwardness ha!). For this first infusion a sweet blog friend, Ruth, reached out and offered her home. We'd never met before but I knew she was good people ;)
Ruth and her sweet family have a great basement area with a private bath and a super comfy futon! It was SO beyond generous of her to offer! We were able to visit with her and Nathan for a few hours and enjoyed getting to know them better. I love meeting blog friends in real life! Plus Ruth only lives around 10 min from Shepherd. It was a HUGE blessing! We hate to inconvenience her family by staying there every time so I did put on FB asking if anyone did happen to live close and didn't mind Zach crashing. We're hoping to spread out all of our sweet friends as to not overstay our welcome anywhere!
It was SUCH a blessing (I know I've already said that but it just really, really was!) to already be in Atlanta and to have a good nights rest. We were able to leave their house about 30 min prior to Zach's appointment time and made it to Shepherd easily and plenty early! We also just enjoyed seeing all the beautiful homes in the area. Zach and I both assumed Atlanta meant "city living" yet this particular area didn't feel like the city at all!
I felt much, much more comfortable walking into Shepherd's than I did last visit. We have had a LOT going on the past few months that has put all of our medical stuff into a different perspective. I'm so thankful for the bond Zach and I share and would rather experience this hard thing than a lot of other hard things that we could have to experience.
Once again we were called back very quickly. They did some vitals with him (including the "walk test" they did before) and the doctor came in to speak with us.
It was a very different vibe than last time. His dr seemed more relaxed and at ease and we felt much more comfortable. I didn't really get emotional or anything this time which probably helped ;) I did thank her for how much time she spent with us during his first visit. I've bragged about it to pretty much everyone but when does a legit dr spend 90 solid minutes in a patients room??? Pretty much never!
I did have a brief list of questions:
- I asked about the amount of vitamin d the kids need to be taking and she said just whatever is in the vitamins I buy for kids are fine (I found a GREAT vitamin with both d and calcium in it at Target)
- We had forgotten to bring the Probiotic Restore that Zach takes with us the first visit. She mentioned during that first visit not to take any "immunity boosters" so we weren't sure if probiotic was considered an immunity booster or not. She said probiotics are awesome and that a lot of research is showing gut health is very important! He will def keep on taking them (I take them too every day and the kids all take a daily probiotic as well).
- We discussed Zach's vitamin d. She said they want his levels to be around 60 and his were 34 when tested. He's doing a weekly vitamin d right now that they prescribed to him and she said to keep doing that for long term.
- She wants to get both another MRI and a spinal MRI here in the near future. To compare to his prior MRIs and see what has changed (assumption is that the bright spot on the MRI with contrast should no longer be bright b/c he's not in an active relapse anymore). They will do MRIs pretty often to compare and see how the meds may be helping things (hopes are that the white spots get smaller/go away...no new spots appear...and no black spots ever at all)
- We asked about this blood protein thing and she said he does need to get in with a hematologist to have it looked at but that it's super, super common and she's not concerned about it nor does she think it'll have any impact on treatment.
My BIG question of the day was how long Zach has had MS. At our last visit I felt like a bomb got dropped on me with his official diagnosis and it was hard to let that sink in fast enough to ask any follow up questions about it. I was thankful for the chance to explain to her that we had not had any official diagnosis so we were super caught off guard about it. I asked about timeframe and she said that he's for sure had this less than 10 years. She said people who go 10 years without treatment (which, sadly, is super often) have black spots. Zach has NO black spots.
Based on the amount of white spots he has and the sizes of them her educated guess is that he's probably had MS for 5 years or less.
It's SO super WEIRD to think that Zach's had this since around the time Britt was born. It's also crazy b/c that time of our lives was insane (my foot issues started, my relationship with my mom dissipated, Austin died...it was a ROUGH year) and it's crazy to think that during all of that, Zach was also beginning his life with MS and we didn't even know it. Kinda thankful we didn't find out back then! I can only imagine how different our lives would be if we had that knowledge at that time.
Knowing that he's had this for awhile has also made the diagnosis SO much easier for me to accept. It's weird to be thankful that my husband has had a life long, incurable disease for 5 years but knowing he's had it all of this time and has still been ZACH makes me feel very hopeful that the meds will allow him to continue just being ZACH too! It kinda makes it less of a life changing thing knowing he's been walking around with it for all this time.
The other big thing we discussed is his plan of treatment moving forward. Zach tested positive for PML which is a common thing. Most people walking around test positive for it BUT testing positive for it means he's at a much greater risk for the super scary side effects of his current infusion medication. No one at Shepherd has ever had the super scary side effect happen and the reason for this is because they are SO cautious. It's the big reason why he will do every infusion at their center. Monitoring him is very important.
It's also why he won't be able to use this particular medication (Tysabri) long term. He does NOT have the highest level of PML which is good but she still wants to transfer him over to an every 6 months infusion as soon as possible. It's very very similar to the one he's currently using and it's been on the market for YEARS but hasn't had a label b/c it wasn't FDA approved. They are in the process of becoming approved and then he will switch over. He'll first go 2 weeks after the new infusion and then will wait 6 months. Every three months he'll be able to go to our local dr for bloodwork there which is a blessing! Once every 6 months will be like a fun date for us rather than such a pain every 28 days to arrange ;)
Something I have ALWAYS struggled with is the "Pain Scale." I literally cannot stand it. Because I probably always go too low when rating my pain. I assume things could always be worse. I mean I'd rate childbirth at like a 4. Getting a limb cut off? Getting shot? I mean a lot of stuff would be way more painful than childbirth right? Anyways this was hanging in the room we were in so I snapped a pic to help myself for reference in the future (I also think Zach rates pain too low...we're both just higher pain tolerance people).
Once we were done chatting up his dr we went over to the infusion room to get hooked up and infused ;)
The actual infusion is the process of the meds being put directly into Zach's bloodstream through IV. It takes about an hour and then they do a "flush" which takes an additional hour. The whole thing is kinda weird right? I don't really understand how it all exactly works but as long as it does what it's supposed to then I'll roll with it ;)
The nurse came by frequently to check on him and told us to let her know of ANY, even minor, side effect. The only one Zach had the whole time was a slight metallic taste in his mouth which he did notify her about and she said it's very normal.
There were no instructions regarding what Zach could eat or drink or anything prior to the infusion but she did say hydration is crucial so he needs to be drinking a lot of water on a regular basis but especially prior, during and after his infusions.
We were in a room with a lot of other people getting infusions. Zach took a lot of notice of the others and how they were doing and he does plan to discuss this with his dr at his next visit. Sure, we know the GOAL is for him to remain symptom free and have no more relapses. But we kinda want a realistic view to base our expectations off of. We don't want to expect one thing when something else may be the more likely outcome. He plans to go solo next visit and I think that'd be a great time to discuss that. He doesn't need me sitting there getting upset if her answer is something bothersome. Hopefully she says that the goal is symptom free and that with his early diagnosis and lack of any symptoms that it's truly the realistic expectation to have. I think Zach and I are just both a tad nervous that it won't be the answer she gives us though! Although we love the goal of being symptom free, we also want to be realistic about things so it'll be good to have those answers from her and kinda be able to figure out what we should expect moving forward.
During our time Zach watched some TV and I worked on adoption agency applications :)
I also started reading my first pleasure book in like a YEAR (The Husband's Secret and I'm LOVING IT). Y'all. It was heavenly getting to just SIT and READ. Zach feels like me going with him to the infusions would be a big inconvenience but I loved the time together, the time away for a bit, and the relaxing reading opportunity. I'd go with him every time if it made sense to do so but also understand his desire to not inconvenience anyone and having people help with the kids and all is tricky! Plus we are hoping to incorporate work with the infusions when possible which would work out better than having to drive me all the way home. Once he switches to the 6 mont ones he better let me come!
I wanted us to do something fun for lunch after his infusion! He was STARVING and we had talked before about someday hitting up The Varisity together. It's an Atlanta must-try right? I haven't had it in YEARS and Zach hasn't had it since he last ate it with Austin.
I LOVE the concept. LOVE the history. LOVE the vibe.
But I just don't love the food. Sorry. :( I guess I'm not a good Atlantian!
I do love the hats though ;)
Everything went flawless with Zach's first infusion. We're three weeks out and he's had NO side effects at all. The drs and nurses commented again at how he has NO symptoms of disease and that they plan on keeping him this way. Which I love hearing :) Everyone feels very optimistic about his prognosis and we do too!
It was a blessing that they got us in when they did. Our insurance starts over every March 1st so since this was in February we actually didn't have to pay anything for it! Whoop whoop! Benefit of a lot of medical expenses in one year is that you meet that deductible and everything feels free haha ;)
Thank you all for the continued prayers for our family. We're all really doing well with everything. The kids pray every night for "Daddy's brain" which is sweet and also a tad awkward. Other than their prayer reminders it really isn't something we dwell on or think about much. We're in a good routine with Zach taking his vitamins and with his eating and I'm incorporating healthier meals into our regular dinner rotations. It's slowly all becoming our new normal and I'm thankful for that. I'm a tad nervous for the summer months and how Zach will respond to the heat but we will cross that bridge when we get to it. I pray our path continues to be this smooth with this disease. We are blessed and thankful.
Also thank you again to Ruth and Nathan for opening your home to us! Any other Atlanta area friends get ready b/c Zach will hopefully be seeing you soon haha!