Author: Carol

I can’t believe it’s been almost two weeks since I last jotted anything down. Let me see if I can rewind and sum up the days.

The CellCept has been doubled and I added two more a day this past Monday to reach my final dose of 3 pills each morning and each evening, no real side effects and so far my blood counts have not been affected. PTL!!!:)

I had my follow up lung function test on the 6th but Dr V is out of the country so won’t really know the results until next week. Some numbers were slightly better while others appear to be worse. Got my portable oxygen concentrator yesterday, this should give me more freedom than the tanks. Still have the larger one for home but honestly I can’t tell you when I last had it on. I’ve learned to just pay attention and stop and rest if I’m getting short of breath. I’ve been able to bathe/shower, do laundry, cook, vacuum and sweep/mop without it! So the medications have to be doing something!

There are only two things that are still issues, my cough seems to be back but, we are also having air quality issues here d/t wildfires in Canada and I’ve been having some chest pain/insomnia the last few nights – I’m wondering if I’m low o oxygen in the night – I’m considering investing in a ring pulse oximeter that can track me at night.

On a more personal note all of my living siblings were home this past weekend. I am the baby of eight, two of our siblings have already passed. They were home to celebrate our Dad’s 90th birthday and our parents 70th anniversary!! It was a good time but again it just highlights the things I can no longer do. I couldn’t even blow out a candle 🙁 I’m also hoping that the gathering doesn’t make me sick, I should have worn a mask. But I also found a side of me that has never surfaced before – a “me” that is starting to not care what people think. I had purchased a beautiful sun dress for our SC/Georgia trip but didn’t wear it because it was “too much”, “too fancy for me”, “would attract attention”. But for the party I wanted to wear it because I didn’t know when OR IF I will every get the appropriate opportunity to wear it again so I told myself even if it is “too much”, “too fancy” or “attracts attention” if you want to wear it then do it – WEAR the DAMN DRESS!

The last two days have gone pretty well. Felt pretty “normal” if you can call it that. No real side effects from the CellCept – guess we will see next week how doubling the dose goes. I don’t really feel like it has progressed any – the fibrosis, I mean. I just wish there was a way to reverse it. But I have to leave that in God’s hands. I will continue to pray and trust in Him (FROG, I guess). I know the doctors have me on the right treatment plan because I’ve done my own research (see screen shots of the charts I saved on my phone, these were from May 23rd, probably one of the reasons I was so emotional that day). I will do my part, take my medications, try to eat better, stay active as much as possible. Other than that, I’m just going to enjoy everything I can for as long as I can.

Based on my PFTs, I have moderate/severe PF already as my FVC is 54% and my DLCO is 46%. MMF is the preferred first line of treatment – MMF is mycophenolate Mofetil – the generic form of CellCept.

Today has been a hard day. First off, I went to get all of that blood work done. 6 attempts to get between 10-12 vials of blood, with one attempt being in my bicep. My veins have had it! They do not want to play anymore.

Then, came the CellCept. The medication I was looking forward to several days ago is now both my hope and my fear at the same time. It’s hard to convince yourself to take something that MAY help but it MAY also make you more sick by wiping out your immune system. Oh yeah, and don’t forget to mention that it increases your risk of lymphoma and skin cancer (so no more sun between the hours of noon-4pm for me, sunscreen and big hate- again, this reminds me of my sister, D-she couldn’t do these things either)

I sat at my kitchen table and cried for 30 minutes trying to convince myself that it was ok to take it. B was so wonderful and supportive – he just let me have my time, let me cry until I could brave it out. Finally, I did it!

Then, there’s my children who are now concerned about their children giving me a germ. I understand their concern but if I can’t be around my family – the thing that gives me the most joy and happiness then I might as well be dead anyways – BUT, I do get it, I would be the same way, in fact I was with my own parents during the height of Covid. We will just have to navigate this new way of life together and be smart about it while still being able to enjoy life TOGETHER.

I started planting the garden today. I’m trying to maintain life as normal as possible given the circumstances. I was able to shop thru Dollar Tree today, granted I was with my middle one and we strolled the aisles as slow as possible. Went to Menard’s later with B but I didn’t even attempt a bigger store without oxygen. Attempted to garden without it but that was a mistake! too much activity! why in the world I thought I could do that is beyond me….denial I think. B had to go get my oxygen after just planting one row of corn. In my mind I know even attempting to do this was a mistake, there is no way I am going to be able to plant, weed, water and harvest a garden this year. What was I thinking? But again, I want to keep on keeping on so I don’t say anything and just act like it’s gonna be fine.

Went back to Dr M’s office today to have all of those labs drawn only for the girl to not be able to get my blood. Not surprised, I will have to go to the hospital on Monday as one of the tests has to be drawn before 11 AM and it’s too late to get there today because I have a follow up with the heart dr next.

The heart dr agrees that I need a heart cath done but he feels now is not the time as I am still in work-up stages and have not really started any treatments for the autoimmune disease yet. He does change my migraine medication to Norvasc. He explains that this will control my heart rate/blood pressure and is also a first line treatment option for some types of pulmonary hypertension so I will take that as a Win-Win situation if it works. (Hoping it keeps my migraines at bay too). He explains that even though my pulmonary hypertension is close to moderate, my heart structure and function are fine. He then tries to explain World Health Organization’s classes for pulmonary hypertension and that right now I’m probably in the lowest class because of the echo results. I don’t quite get it but I at least understand why we are waiting on an invasive procedure. I can read up on the other stuff. Follow up in two months to discuss again.

Overall, I had a good day at home. I was able to prepare MOST of dinner without oxygen – another plus to the day. Still no CellCept at the pharmacy, guess I will have to check on that on Monday when I’m at the hospital

(I think I may need to explain here why cooking, cleaning, laundry, etc are difficult with interstitial lung disease and pulmonary hypertension. Any activity where I need to bend over, reach over my head, carry additional weight all add stress to a system that is already struggling. Heck just standing up and walking a few feet can raise my heart rate. Faster heart rate = blood moving faster = less time for the oxygen and carbon dioxide to exchange in a system where there is scar tissue blocking the way) So the longer I’m up and moving the more likely I am to need the assistance of oxygen. But looking back on it now, I didn’t WANT to need oxygen, I WANTED to be normal, so I did a lot of things without it and thought it was a win if I got through it – I’m not so sure that’s a good thing now (three years later)

I met with my sister this morning at Mocha House. It was good to see her, and it helped me pass the time. She’s a grandma now for the fourth time, her granddaughter was born while I was in the hospital. We talked about my appointments coming up, what I had gone through, etc. It made us both cry – “a little” but I think we both needed to be together as sisters. I know I NEEDED HER!

My first appointment was with Dr. V, the lung dr. He says we will repeat the lung function tests in a few weeks – he wants to give the steroids more time to work. He suggests I stay on the prednisone AND start CellCept for the lung disease but he is leaving that up to the rheumatologist that I see next. Says that it looks like Sjogrens, not lupus, that has wreaked all of the havoc. But I’m skeptical because all I ever learned in nursing school about Sjogrens was dry eyes and dry mouth – so I’m waiting until the expert tells me. Period-end of story.

He goes on the say that I’m aspirating – WHAT?! Really?! Says his view during the biopsy was obscured because of food. Yeah, in my lungs. Food in my lungs! It’s not supposed to be there! Told me to elevate the head of my bed with books so I guess it’s happening in my sleep? Overall, he seems pleased that I’m doing the same, maybe even a little better. I need to get the shingles vaccine and the larger pneumonia vaccine but I can’t get that until the end of June since I just got the Prevnar 13 in the hospital. Come back to see him in 3 months.

Met with the rheumatologist, Dr. M, a few hours later (we ate at Mission BBQ between appointments – yum!) He is so nice and explains well. He confirms SJOGRENS – I can’t believe it – it can be systemic so it’s more than just dry eyes and dry mouth. He agrees with the prednisone and CellCept and write prescriptions for both. He also orders a crap ton of labs – have to check hepatitis and TB, need to have baseline CBC (and will need this weekly for a month and then monthly due to the CellCept). And he’s still checking other antibodies that didn’t get done in the hospital…

The CellCept will basically knock out my immune system so I’m a little scare of what that will mean infection wise but Dr. M explains that it doesn’t necessarily mean I’m more prone but if I do get sick and need antibiotics he needs to know and I will have to stop the CellCept – I am a nurse, but this stuff is way beyond my knowledge and I am feeling very overwhelmed right now. I have a lot of reading I’m gonna have to do now that I know what we are dealing with. Follow up in 6 weeks.

Overall, I’m happy with the explanation – I guess, I mean how happy can you be that you have an autoimmune disease that has the potential to kill you but at least now we have a diagnosis and we have a treatment plan – step 1 and step 2. I am feeling some relief to my anxiety.

Poor B (my husband) however is going to have a heart attack though. after the appointments he says his chest has hurt for three weeks. My poor love, I wouldn’t have known – he has hidden it well.

Mission BBQ, May 18th, 2023

15th – Today was a good day. No real issues. Was able to get out to one of E’s baseball games again – this time with the smaller tank and a cart to carry chairs in.

16th – Felt like crap for a few hours today – blood pressure was high 160s/100s. went ahead and took my migraine medicine again today – felt better within the hour. Not sure if I needed to take the medications because it had been a few days or if the high blood pressure was from what I ate for lunch. I had broccoli but it was in a sauce that had soy sauce in it – maybe too much sodium?? Guess I will start paying closer attention.

17th – Overall, a good day. Starting to get nervous for my appointments tomorrow and Friday. I want to hear wonderful, great news but the reality of that is pretty slim I fear after everything I’ve been reading – which is a huge mistake, but I can’t help it. I just need to keep reminding myself to F.R.O.G. Praying that He provides the answers….well, I know He has the answers – maybe it’s more like praying He gives me the answers I WANT if I’m being honest.

My husband and I also “talked” some today. We haven’t really said much about the severity, not sure either of us want to go there just yet – holding out hope that that conversation is many years down the road. Not sure our conversation really accomplished much but at least the door is now cracked open.

It’s a sober feeling, or maybe the word is somber? knowing that this could possibly be your last mother’s day but I didn’t allow myself to dwell on that. I enjoyed my day with my kids and grandkids – unfortunately my husband had to work.

My heart rate stayed under 100 today and I fully enjoyed NOT feeling it trying to bust through my chest and NOT hearing it in my ears all day. Hopefully the cardiologist won’t find my pulmonary hypertension to be an issue and I can continue to take it – or at least an alternative.

My breathing seemed easier today too, I only used oxygen to make a meal. I even did several loads of laundry without needing it. woo-hoo! Big win, even it it’s just for today – I will take it!

The last couple days have been uneventful. I did get out to see my grandson, E’s baseball game the other night. The walk was difficult carrying that “D” oxygen tank around. I ordered smaller ones and they came today. They only last for about an hour though but that’s enough to get me to/from the fields.

Went shopping today-Aldi and Walmart – first time doing larger stores, was gone about an hour and a half and noticed with about 20 minutes left in Walmart that I was starting to struggle – get home to find that I didn’t turn the valve open so I wasn’t getting any oxygen the whole time I was shopping. Lesson learned! – always check your tank and always carry a tank key. I was worn out the rest of the day. I also took my migraine medication this evening, I can’t take my heart beating this fast anymore, I need a break!