What's on your June calendar?

[Colleen]

Shout out to my FWW @jen-cueva for catching things when my mind is on siesta. I was about to post about June appointments but had a feeling I should check and sure enough Jen was on it already! Thank you!

Cullen returns on June 15th (he’s visiting Brian’s family in WI) and the very next day we hit the ground running with appointments.

Mom has an appointment on Friday with her internist. It’s a follow-up from her hospital stay and a requirement so she can continue the home care visits.

[jen-cueva]

Thanks, @Colleen; as you know, teamwork makes the dreams work! It’s what you, too, would do for me.

I’m grateful Cullen is spending time with Brian’s family. I know today must be difficult since it’s Brian’s birthday. Please take today and do whatever you feel like doing in memory of Brian. How are you managing your emotions? I can only imagine how your grief waxes and wanes for you.

I bet you and Cullen will be at full speed once he’s back and until he gets settled into his dorm. Praying that his visits are all positive and stable.

How’s home health with your mom going? Is her original nurse back next week? How are the PT exercises going with you and both parents?

Sending extra love and hugs to you, my friend and FWW. Please let us know how we can best support you.

I didn’t see any appointments for you, our superstar caregiver…🥊

[Colleen]

Thanks @jen-cueva . Someone told me that often grief is worse in the 2nd year, and I’ve been finding that to be true. Part of it I think is caring for my parents. It’s a lot of work but there is a lot of down time too of just sitting on the sofa watching what they want to watch on TV which is always the news or Westerns. Leaves me time to think and grieve more than I’ve had time to do last year.
How are you doing, Jen?

[jen-cueva]

Hi, @Colleen, you make a valid point. When my stepfather passed away, my mom was busy caring for my grandmother with dementia, leaving little time to grieve. After my grandmother died, my mom’s emotions overwhelmed her, and she was starting to mourn her husband.

Now, she had to grieve both her mom and husband within a year. It was a heavy time, and her mental health struggled as she finally had time to think. She had been nonstop for almost a year, but just before Mother’s Day, she relapsed.

She thought she no longer needed her meds or psychiatrist. Now, she’s seeing her doctor every two weeks to adjust her meds for depression. I share this to highlight that this is common with grief and caregivers. Take your meds and don’t stop just because you feel better. You’re loved and cared for, my friend. Take care of yourself!

[Colleen]

@jen-cueva my heart goes out to your mom, the poor dear! When you lose someone close to you I’m afraid grief follows you around until you see your loved ones again. Sometimes you aren’t aware of it’s shadow then suddenly it startles you.

[jen-cueva]

That’s the scary thought about grief, @Colleen. “It does follow you around until you see your loved ones again. Sometimes, you aren’t aware of its shadow, and then suddenly, it startles you.”

Thanks, my sweet friend; your thoughtful words mean the world, and I know you know all too closely how grief feels, especially when it’s a spouse. Just know we are here, and although I’ve not experienced grief in this close relationship, I can listen and love you through it.

[Colleen]

As I mentioned Cullen returns on Saturday night and starting Monday he is many appointments next week. Prayers and positive thoughts will be appreciated because something all his doctors will be discussing is his blood pressure. For almost a year now his BP has been climbing and now it reaches dangerous levels at times. They keep changing medication and dosages but so far nothing is helping and the high BP could be effecting his kidneys. They decreased his acid reflux medication because it can be hard on the kidneys but since they did he is having problems with reflux. Reflux must be managed or it can damage his lungs and possibly put him in rejection. We are dealing with a domino effect and I hope things will improve before he starts college at the end of August.

Thanks everyone!

[Colleen]

A little update on Cullen. Transplant put him back on his normal dose of reflux medication when they heard how bad it was getting since they decreased it. He recently wore another 24 hour blood pressure machine and it didn’t show any serious problems which has us scratching out heads. His BP has been skyrocketing at night for the past month but one day and night of wearing the machine it behaves? Go figure!

His kidneys are unhappy. He drinks so much water every day yet his creatinine levels are the highest they have ever been. I take him to the hospital tomorrow for an infusion to try and make them happy again.

[jen-cueva]

So far this month, I have labs tomorrow for my nephrologist appointment next week. I had a video visit with my PH team last week and will see them at the end of July.

I have therapy appointments—I have to keep my mental health in check. She’s been wonderful for me. Like @Dawn feared before, I was nervous about finding a new one once I moved to SD. But she is more effective and much easier to take than my first one in Texas. Dawn, how are your therapy and overall health this month? It’s been a few months since I’ve received an update.

Thinking of you and also @Tracey , @Nancy McSweeney , @Carol alexander , @Vanessa Vaile , and @Joanne Sperando, to name a few off the top of my head this morning. Please update us when you get a chance. We would love to support you through this new month.

[Tracey]

Hi @jen-cueva I’m sorry I’ve been so scarce of late. I guess I’ve been hiding from reality for a bit. I’m finding a lot of things to be overwhelming at the moment. Every time I think “ok I’ve got this” something new gets thrown in the mix and I have to find my normal again. But I think mostly I’ve really been struggling with missing my old life, and missing me. I read a post on FB by someone who was also struggling and it sort of tipped me over the edge. I’ve never cried about what I’ve lost, but I’ve given myself permission to wallow in it and cry for a while. Though always behind closed doors – cheerful, in charge Tracey on the outside, not so much when I’m alone. I feel like a bit if a phony but that’s just how things roll in my life. I’m not really supported so don’t feel comfortable sharing with anyone and anyway only people who live it understand it. I’m not in the mood for meaningless platitudes so I’d rather keep quiet.

Nothing happening on my medical calendar this month except labs but I might just hide from that too.

[Roger Bliss]

Tracy,

I understand where you are coming from. I have PAH and cancer. I can’t do much of anything I used to do. I was extremely active. I took tourists on dog sled tours in Denali Park and ran the Iditarod a couple of times. I would be hard pressed to even harness up a dog team now let alone run one. However, I have moved forward……that life is behind me now. My dreams of climbing Denali are pretty much shattered too.

What has helped me is doing volunteer work with the handicapped when I was able bodied. There are a ton of people out there that are a lot worse of than than you or me. Many by accidents and they were handicapped overnight. The part that will get to you is to see how happy they are doing fun things. We used to donate 3 day mushing trips to an outward bound group back in the day. It would bring a tear to all of us to see how happy those people were. It would make all of our problem seem pretty small.

Just this last week I had a couple things happen that raised my spirits. I had one of the owners of a multi million dollar paving company looking to buy my dump truck. I told him I was selling out my business as I will be turning 71 this summer and wanted to retire. He looked at me in amazement and said “You are extremely lucky, most people can’t pass a DOT physical at your age.” That made my day. He didn’t know I had any health problems. The other was when I was shopping in Wal Mart. I saw a guy in an electric wheel chair, which in not uncommon. I wondered why he had his tongue stuck out. Apparently (just guessing as I don’t know anything about him) he was was paralyzed from the neck down. He was using his tongue on some pad to maneuver his wheelchair. He looked to be in his 30’s.

Try finding organizations that work with disabled people, either as a volunteer or participant. Look around and you will see so may others who are way worse off than you and happy. Anyways that has always worked for me.

[jen-cueva]

Hi stranger, @Tracey; I’m sorry you’ve been dealing with overwhelming emotions. You ARE NOT alone, my PHriend.

It often seems like when things are going well, our bodies send us a warning. We can all relate to these feelings on many levels. I held in my emotions for years and finally broke down in the hospital. My medical team told my family I couldn’t keep up the pace I wanted. That left me broken for a while. One late PHriend used to say, <i style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>“It’s ok to get on the pity pot at times—just be sure to flush!” I carry that with me to remind myself we must feel our emotions, process them, and move on. It helps us stay mindful of our well-being.

I get overwhelmed sometimes, so I don’t make it to social media often. I’d love to write a column on this topic. Would you share some of your thoughts anonymously? Like you, I’m at a point where I can’t waste energy on things that don’t matter. It’s not that I don’t want to make friends; I just prefer having a few close friends and my PHriends. After a few hospitalizations and time away from social media, I realized it was okay. Others were okay too. Does that make sense? It’s Friday, and my brain is almost done. Therapy is helping me too.🤗

The mental part of rare disease is not talked about as much as it should!

I’m sending you extra love, prayers, and hugs from San Diego, Tracey!🌞

[Roger Bliss]

My goal is to stay away from doctors as much as I can this summer. I get an infusion once a month with anti bodies to to boost my immune system (from cancer). That actually has been working and I feel good after them. So far that’s the only appointment have this month.

I met with my cardiologist, oncologist and GP in May and don’t need to go back to any of them till till October/November. Supposed to have an appointment with an allergist some time this summer, but don’t know when.

[jen-cueva]

Woo-hoo, @Roger Bliss. I LOVE that summer goal! You had a pretty good “PM” while at UCSD. Hopefully, that will help you through the summer without needing any doctors.

Also, congrats to the guy who wants to buy your company. It sounds like things are going to work out well for you this summer, my PHriend.You and MaryEllen enjoy the summer and take care of each other!

[jen-cueva]

Hi @Colleen, oh no, I am so happy Cullen’s transplant team started him back on the acid medication. But I worry about his kidneys because I, too, know how challenging it can be to get the creatine levels back down once they are so high. Is he on any types of diuretics and anything that would cause this elevation?

You mention he drinks water. I know he has in the past, but do they have him drink a specific amount of fluid daily? I know I’ve kept track of my fluid intake on the free My Fitness Pal app. Is he also urinating a lot? He isn’t diabetic, is he?

How did the infusion go, and when will they repeat his labs? If you need anything, just text or call. I’m happy to chat, and it’s always great to catch up with you. Please keep us posted. You all are in my thoughts and prayers. 🙏🤗

[Colleen]

@jen-cueva knock wood, he is not diabetic. He keeps track of his water with his hyrdro flask he uses. They increased the amount they want him to drink every day. He’s doing it but it’s a lot!

[jen-cueva]

Hey, @Colleen, I am grateful he doesn’t have diabetes. That’s a blessing.

I knew before he was great at drinking water. It’s you who isn’t the water drinker. 🙃

When you are told to increase or decrease fluids, it’s challenging, I know. I have positive thoughts and prayers that his numbers improve soon.

Hopefully, you and Cullen both enjoy something fun this weekend. 🤗

[Colleen]

@jen-cueva I am actually doing very well with my water intake. Cullen ordered me a hydro-flask that keeps the water very cold. I find myself drinking more because of it and surprising myself when I quickly empty it!

How is everyone else doing with their water intake? Anyone care to share?

[jen-cueva]

Hey, y’all, Happy Friday!

I’ll share a minor update on me this month. Yesterday, I finally got a new home concentrator after mine died a few days ago. That’s also a win for the month!

On another positive note, my kidneys are almost back to their baseline, so we are moving in the right direction. Thank God, no labs are needed for a few weeks.

So, how are your appointments going? How are y’all feeling as we near the end of June?

[Colleen]

@jen-cueva it makes me SO happy to hear a good update from you, especially regarding your kidneys! Sounds like you have gotten over another hump and I pray for your road to continue being smoother moving forward.

[jen-cueva]

Hi @Colleen, thank you so much for your support. Yes, those weekly labs get old, with hurdles, but another one is crossed. My kidneys aren’t at their baseline, but I’m improving, so I’ll take it!

How are things for you going? I know with Cullen’s appointments and both of your parents, you probably have not yet made yours. Please keep us posted; you’re also preparing Cullen for college life! It’s so cool and exciting! 🙏

[jen-cueva]

Hey, @Tracey, @ky , @Sally Hoffman ,@Debbie Moore, @Carol Volckmann, and all, how did your June appointments go? Did you learn anything new? Hopefully, everyone received some positive or at least stable news on your PH.

[Colleen]

PHriends, I’m anxious to hear your updates. I hope appointments went well so we can celebrate that with you and if not, we are here to help support you as best we can. You are all in my thoughts!