Update from Colleen’s house

[Sally Hoffman]

Colleen, sending you and Cullen and Aiden many prayers and much love.

 

[V.R. Peterson]

@ColleenSteele, your family (especially Cullen) is in my prayers. May God watch over you all.

@jenc, thank you so much for keeping us updated.

[Carol Volckmann]

Colleen, Cullen and Aiden our family is surrounding all of you LOVE ❤️,  positive energy ✨️,  and our prayers for each if you 🙏.  We also pray for Cullen’s medical team and for Cullen to come through his recovery from COVID quickly without any complications. Stay strong Cullen!

Colleen you have been through soooo much and now COVID hits your family. It is too much, I know you are one of the strongest women I know. Right now you probably feel like you are under water with the weight of bricks holding you down. But, you are not. You have so many you can reach out to to help you through this. Please do reach out and let those people know you need their help, their prayers and their love.

You are in our hearts and thoughts every day and every day we will surround you, Cullen and Aiden in light, strength and love.

[Carol Volckmann]

Jen, thank you for letting everyone know about Colleen and her family.

It makes me so angry after everything Colleen has been through … now this! Colleen has not even had a moment to grieve the death of Brian.

And now Cullen as fragile as he is – this has to be so scary for all of them.

My heart breaks for them. 🙏 and more prayers.

[jen-cueva]

Thanks to you all for the positive thoughts and prayers for Colleen and her boys. She updated me late last night, and I want to share that. I tried telling Colleen to take this time to care for herself and rest as she and the boys recover.

She texted me this last night, “We are home. Have to go back 2 more times this week for more treatments. He is doing ok except for a very bad migraine”

He was started on treatment and also hydration while at the hospital. But thankfully, they didn’t need to admit and keep him. I asked if she and Aidan were starting treatment too, but she didn’t respond. I hope they can so they all recover quicker without any more complications.

Colleen, as I said and our leaders and members echo, we are here, but please focus on recovery and your emotional health, too. You are so loved and cared for. Please let us know how we can best support you, my dear FWW and friend.💜🙏

[Carol Volckmann]

We thank you also Jen for keeping everyone updated

Colleen we are continuing to send you and Cullen our prayers and love. So glad to hear Cullen did not have to be admitted. His recovery may be long but thank goodness his team is on top of getting him the best of care.

Please take care of yourself, Aiden too. Lots of love and positive energy coming your way. ❤️❤️❤️

[V.R. Peterson]

Thank you, @jenc for the update. Migraines suck, but they’re much better than what could’ve been. I’m continuing to pray for your and your family, @ColleenSteele. Please concentrate on taking care of yourself and your boys. The forum and members will be continue in @jenc’s capable hands until you’re all well again. I’m sending you all lots of love and gentle hugs. 🤗

[jen-cueva]

This morning, @colleensteele texted me to let me know that Cullen will receive his third treatment today. She mentioned that the treatments are having a positive impact on him.

As for her and Aidan’s well-being, she hasn’t replied yet. If I receive any updates from her today, I will inform you. She’s focusing on resting and plans to return to Seattle with Cullen this afternoon.

Colleen, we are all here for you, embracing you three with our love, hugs, and prayers. Please take time off until next week or whenever you’re feeling better. The forums are running smoothly, and we’ll be here to support you whenever you are ready.

[Carol Volckmann]

Cullen responding to his treatment IS good news. One day at a time with lots of rest for Cullen and Colleen!

Thanks for the update. Keeping them in our prayers and sending lots of love ❤️

[V.R. Peterson]

Thank you for the update, @jenc. This is a cause for believing in hope.

@ColleenSteele, you and your boys continue in my prayers.

[Roger Bliss]

Thoughts and prayers headed to Colleen and her family. Hopefully they will have a speedy recovery.

[brenda-denzler]

An abundance of love and healing energy is headed Cullen’s and Aiden’s way. And like Aaron did for Moses, we are here to hold up your hands in all your prayers for your boys. <<many long, deep hugs>>

Brenda

[Aunt Lizzie]

On the wings of a beautiful sea-bird I send you love and virtual flowers from Australia.   All good wishes for a safe healthy recovery for you all.

[Dorothy]

Oh, dear Colleen, I can so identify with how you must feel after my recent months where it just seemed there was no end to difficulties. I truly have not been sure I would make it this long. Learning what you are now going through makes me realize that while such times tend to leave a forever mark on our lives, we can survive more than we thought as strong people to begin with.
Moving out of state is a tall order in the best of times. On the other hand one of the greatest gifts you have been given, other than strength and wisdom, is relatively good health, as far as I know. Sending you added strength, wisdom and good health My Girl. You see, I too am pulling for you. 🙏🏾 Doti Browning

[Linda Concoby]

Dear Colleen, my prayers are with you and your sons.

Blessings,

Linda Concoby

[jen-cueva]

Hey, y’all, I want to share the last update I got on Friday night from @colleensteele. Unfortunately, the roadblocks keep coming for her and the boys. Thursday, Cullen received his 3rd and final treatment for COVID in Seattle.

She said, “That went well, and he is feeling improvement and even starting to eat again. I’m feeling better too. But on the way home, we get a call from Aidan. He was on a job site about 2.5 hours away when out of the blue, he was hit with horrific pain on his side. He was taken by ambulance to the nearest hospital”.

She drove Cullen home and then went to meet Aidan at the hospital. They took him in at 6 PM. Colleen said this was the worst hospital experience ever! But then said, “At 6 AM, a doctor finally came in and told him he had a bad UTI that infected his kidneys. Put him on an antibiotic, and at 7:30 AM this morning, he was sent home“.

Please continue to send them your positive thoughts, vibes, love, and prayers. Hopefully, they could all rest the weekend and start again tomorrow. I hate that they are being hit with one thing after another!

On a positive note, I believe tomorrow, Monday, 8/7, is Cullen’s transplant anniversary!

As you know, Colleen, we are sending you love, hugs, and prayers, my FWW and friend. Rest and return when you are rested and things calm down for you.

[V.R. Peterson]

@ColleenSteele, I’m so sorry that Aiden had to wait so long to get a diagnosis. I’m praying that the antibiotics work quickly for Aiden and that they knock the infection out completely. I’m also praying that life for you and your boys calm the heck down!

[jen-cueva]

Hi @mamabear007, I, too, echo that—extra love and prayers for life to calm down for @colleensteele and the boys. Balancing the roles of a mom and caregiver while grieving the loss of her partner can be overwhelming for her. Taking care of herself may be a challenge in the midst of her caregiving responsibilities. I sincerely hope she experiences healing, peace, and joy in due time. She truly is an exceptional woman.

This morning she updated me with the message below. I will keep y’all posted and hope y’all can send her and the boys extra love, hugs, positive thoughts, and prayers.

Awesome milestone for Cullen celebrating 9 years today his transplant anniversary!

“Good morning, everyone. I wish I could report that things are better, but they are not. As I predicted Aidan’s problem is not a UTI but kidney stones. He has passed 2, went to work today and the horrible pain he was in on Friday has returned. I’m trying to get him in to be seen by my urologist. Meanwhile, Cullen has taken a step backward. His breathing is off and he is nauseous. He is supposed to move to NJ on the 11th but he thinks he is going to postpone that until his health improves. Waiting to hear back from lung transplant. I had to tell my sons that whosever doctor gets back to us first that is the appointment I will attend.

On a positive note…Cullen celebrates 9 years post transplant today.”

Colleen, you are cherished, and we are here to support you through these difficult times. I deeply apologize for the multiple challenges you and your boys are facing. You truly deserve a moment of respite and relief.<3

[jen-cueva]

I’m sharing this response from @cdvol3gmail-com that was posted as an update. Carol posted the text below, @colleensteele.

“@colleensteele OMG Collen, we are do sorry you just keep getting hit by a bus!

Happy to hear Cullen’s treatments have worked! Aiden must have been is such agony all night waiting for a doctor to check on him. What a horror story for him and for yourself. Are you comfortable in naming the hospital Aiden was taken to?

Okay enough really is enough!! Our prayers and love surround all of you. And our hopes are all of you will get through this and be able to take a breather and see the light at the end of the tunnel.

Please get some rest and know there are so many have you in their thoughts and prayers. Lots of warm, gentle hugs filled with love ❤️.”

[Carol Volckmann]

Colleen, there is a poem about Faith. I do not know who wrote it but when ever everything seems to be crashing around me, I am reminded of the meaning … I don’t have all the words but here is the meaning of Faith.

Faith is knowing when you are surrounded by the darkness and you are about to step off into the unknown, Faith is knowing either you will step onto solid ground or … you will be taught how to fly.

Colleen you absolutely amaze me – you always see light where there is darkness. You find the positive. Cullen’s breathing is off and he has nausea  – he is also celebrating 9 years since his transplants. Cullen is strong! Cullen and Aiden are strong, they support each other – you are all there for each other.

All of you remain in my prayers, my love, my support like so many others. I know there is a solid ground and I know you will fly if you need to.

Warm gentle hugs.

[jen-cueva]

Hi @cdvol3gmail-com, you are right; @colleensteele is such a fantastic woman! I love the faith poem you shared with her. Yesterday I sent her a prayer that was part of my morning devotional.

I did talk to her this morning, so I’ll update you below. She certainly feels the love and support from each of you here.

How are you doing this week, sweet PHriend?

[Carol Volckmann]

Good afternoon sweet friend. Thank you for all your support and keeping everyone up-to-date on Colleen and her family. She is going so much it is difficult to think about what issues I might be dealing with – just not that important right now. I do what I need to do and keep going. She is in my thoughts every single day. You too … helping support Colleen and the boys while taking up the gauntlet reaching out snd responding to others as they too need your support. And then, it is taking care of you and dealing eith with your health issues, more labs, more time with your team. My heart, my love and my prayers go out to you too ❤️ 🙏

[V.R. Peterson]

@ColleenSteele, thank you for allowing @jenc to update us.

The good news about kidney stones is that your urologist can analyze them. Once they know the composition, the doctor can tell him how to prevent further stones of that type. He’s in my prayers until he’s able to pass the remaining stones — or they lithotripsy the remaining stones (blast them with shock waves or laser) if they’re too large to pass on their own. My husband had lithotripsy a few decades ago, and it was a walk in the park compared to the pain the stones were causing.

I’m also praying for Cullen, that the breathing issues and nausea are easily fixed.

I’m praying for you to have a Calgon moment. Do you remember the “Calgon take me away” commercial from the 70’s and 80’s?

[jen-cueva]

@mamabear007, I remember that “Calgon, take me away” commercial. I think Colleen needs more than that. Maybe a glass of wine while soaking in her bath of Calgon. Hehe.

I say that some days when things go sideways. So many are like what are you talking about? I guess I am getting older.

Manny has had kidney stones, too and the pain was horrific. Some men compare it to natural childbirth.

I’m grateful for your prayers and love, and I know Colleen and the boys are feeling them, too.Thanks, sweet lady!

[V.R. Peterson]

@jenc, I’m lucky. I’ve had three children, and I still don’t know what natural childbirth feels like — they were all c-sections. They told me I had contractions during my first one, but I didn’t feel anything — his cord was between his head and my cervix, so there wasn’t anything hard to push anything open. Never realized before then that it’s the baby’s head that does that.

[Randolph Reynolds]

Just came onto these exchanges.  Colleen’s family has been in a medical ‘war zone’.  I am terribly sorry.  Adding my prayers to all that have been offered up I would expect that Cullen and  Aiden will be moved out of that awful situation.  I like Carol’s poem. It is very applicable for me as well.

Read Psalm 91. It covers all things.

Bless you Colleen and your family.

[jen-cueva]

Hi @ripple76, you worded this perfectly, they are in a “medical warzone.” I’m grateful to have talked with her earlier this morning.

She is so grateful for the enormous love, support, and prayers from each of you in the forums.

I love that verse, Psalms 91; it feels like finding shelter in the storms of life.

Hopefully, you are doing alright this week. It’s so nice seeing you pop in the forums, my PH PHriend.

[jen-cueva]

Yesterday I was so excited to hear the voice of our sweet @colleensteele. We talked for some time, and she updated me. Of course, she misses you all here, our PHamily. She is so grateful for the warm thoughts and prayers from each of you.

But, hopefully, things are improving for the most part. She, of course, is exhausted and needs to rest and take care of herself now so she doesn’t relapse. She was planning to write some thank you notes from both funerals and watch something comical.

Aidan passed a few stones and planned to go to the hospital yesterday. Cullen was still dealing with some nausea and dizziness, so hopefully, he feels better each day. He may or may not be heading to NJ this weekend.

She also mentioned COVID cases are increasing there in WA and to be careful. She hopes to get on the forums soon.

Colleen, our gentle hugs, love, and prayers continue to be with you. Please take care of yourself now; we will be here when you are ready with open arms. Better days are ahead, one step at a time, my lovely FWW and friend.

[Carol Volckmann]

Thank you Jen for Colleen’s and the boys’ update. A bit better each day is good news. Please pass along our prayers and love that positives improvements each day.

Nothing has been easy for them but hopefully that will start to change 🙏.

 

 

[jen-cueva]

Hi @cdvol3gmail-com and @mamabear007, for your continued thoughts and prayers for Colleen and her boys. I’ll update as I learn new updates, but nothing yet as of this morning.

I hope you both enjoy a cool, relaxing day. <3

[V.R. Peterson]

Colleen, you and the boys remain in my prayers. May the Lord hold you all in the Palm of His Hand. 🙏🏻

[Colleen]

@jenc @mamabear007 @cdvol3gmail-com @ripple76 @lindaconcoby @brendad53 @dorothyirwin-browning @auntlizzie @wheeldog @auntlizzie

Words can’t express how deeply your messages have touched my soul! Thank you my friends for your love and support during this difficult time. To log in and see all of these messages made me feel so comforted!

@cdvol3gmail-com, I love the poem you shared! Faith is what keeps me going…that and good people like all of you!

@mamabear007 I am laughing at the Calgon reference! I still quote that commercial sometimes and not everyone, especially my kids, know what the heck I’m talking about. LOL! Do they even still make Calgon?

@cdvol3gmail-com you mentioned my not having time to grieve properly. I mentioned that to @jenc yesterday. First there was the memorial in WA, then the one in WI, then Covid, Aidan’s kidney stone, busy clearing the house out and eventually will do the big move. In between all of this I have moments of deep grief but I am preparing myself that probably, once I’m finally settled in NJ, the intense grief is going to hit me like a ton of bricks!

Update: Aidan is back at work but still experiencing some pain. He sees my urologist at the end of the month. Kidney stones can be hereditary which I believe is the case for us. My dad had them, I’ve had them many times and now Aidan. I’m still so annoyed with that ER. I asked about kidney stones and they said, “Well, we used contrast during the CAT scan which makes it hard to see stones. If they are there we didn’t see them. We think he just has a UTI”. Next day he passes 2 stones and I think there is a possibility there is another stuck somewhere.

Cullen was supposed to fly to NJ tomorrow but we have canceled his flight. We don’t want to expose my parents to Covid and he keeps experiencing set-backs. His cough seems to be increasing again and last night he was throwing up.

I’m fine. Just exhausted all the time.

Thank you @jenc for keeping everyone updated and for being such a good and loyal friend to me!

[V.R. Peterson]

@ColleenSteele, yes they still make Calgon. I just looked on Amazon, and some of their products still say, “Calgon, take me away,” on the box!

Something we found out the last time hubs went to get a CT scan for kidney stones… CT scans (I’m assuming without contrast), do not pick up stones unless they’re calcium composition. The CT showed he did NOT have any stones. That afternoon, after we were home, he passed one that was very different in color from the calcium stones he used to get. Hubs gave it to the doctor to test for composition, but the doctor never bothered telling him what the stone was made of! I told hubs he should call the doctor to ask about that — or at least let me call. He didn’t want to bother the doctor. Now I know where my son gets his hard head. 🙄

[Colleen]

@mamabear007 thank you for sharing your husband’s experience. Those little buggers aren’t always easy to find…or pass and the calcium theory explains why sometimes CAT scans don’t always show them.

Aidan managed to catch one stone which he will take with him when he sees the urologist.

If you are a frequent flyer like I am there is medication you can take to help prevent stones from forming, but they need to have an idea of what the stones primarily consist of. Last time I had multiple stones at once I was supposed to do collection and turn it into the doctor so he could test composition and possibly place me on medication. Did I follow through…no I did not. I’m sure if I get another kidney stone I will regret that.

[Colleen]

@mamabear007 I forgot to mention…do you know what else you can buy through Amazon? Love’s Baby Soft and Jean Nate perfume and cologne! I loved those scents as a kid! I’ve been so tempted to buy a bottle of each.

Funny, I remember why I stopped wearing Jean Nate. I was attending Catholic grade school and someone told me the nuns liked wearing Jean Nate. I didn’t want to smell like the nuns! LOL!

[V.R. Peterson]

Oh, I LOVE Love’s Baby Soft! I’m off to go do some searching on Amazon!

[jen-cueva]

Welcome back, at least when you can come on and feel the love and support. I know we all grieve in our way and in our own time. But with all on your overflowing plate, you haven’t had that time. As you know, I’m here to help in any way I can. I would love to be there and help. However, we would probably not get much done except chat. Hehe.

Aww, I also used Jean Nate and Love’s Baby Soft. Too funny, Colleen, that you stopped when being told the nuns smelled like Jean Nate.

For the new week ahead, I pray things begin calming down at your house. I hope you are taking time to rest, as we discussed. I doubt no amount of rest or sleep will account for your recent deficits, my FWW, and friend. I’m here and only a call or text away.

It warms my heart to see the enormous love and support our members offer to others while struggling themselves daily. <3

[Linda Concoby]

Dear Colleen,

You have been through a lot. I do think adding good scents – Calgon,  Love’s Baby Soft, Jean Nate – to your healing kit will be helpful.

And for many others, myself included.  I seem to recall…Blue Grass, I think…so I am going to search for it.
Blessings

[jen-cueva]

Hi @lindaconcoby, I don’t recall Blue Grass. So, of course, I had to Google it. It seems to be by Elizabeth Arden, and I loved her Red Door perfume, too.

Blue Grass sounds lighter and is described on Amazon as “a breath of fresh air.” I think it would also make a lovely scent, which many of us could tolerate without being overpowerful.

I love that you call it Colleen’s “healing kit,” with all the scents and things needed. This is an excellent column topic. I bet @colleensteele could do one once she is settled. Or, I could do one as a recovery from a PH Crisis or hospitalization, etc.

[Linda Concoby]

Yes, Jen! You are too young to remember Blue Grass! I ordered the stick perfume.

I applaud your suggestion for writing about Healing Kits, a phrase that just occurred when I was writing my earlier post. I look forward to both your comments as well as Colleen ‘s. And anyone else who wants to chime in.

 

 

 

[jen-cueva]

Thanks, @lindaconcoby; I’ll take that as a compliment. You are too kind.

Excellent that you could order the Blue Grass stick perfume. That should take you back a few decades.

I love that “healing kit” idea. Thanks for coming up with that. Hopefully, you’re having a great week.

[Bill Jones]

Hello all. It’s been quite awhile since I’ve logged in, I just have had multiple setbacks, mostly with infections. But I can definitely say a lot has been going on in my absence. Colleen, I am so sorry to hear the heart breaking news you and your boys are going through.  I can’t imagine what all that would be like.  My prayers are with you and your family.  I admire your strength.  I can only hope everyone else on here is doing okay.

[Colleen]

@bill-jones thank you for the condolences! I appreciate that you reached out!

I have often wondered how you are doing since your transplant. I’m very sorry to hear that you have been dealing with infections. I hope you aren’t feeling discouraged. My son has been through a lot of struggles over the years but just celebrated 9 years post transplant. May that give you hope!

If you feel up to sharing more about what you have been going through maybe start a topic on our sub-forum Lung Transplantation

I assume you have been going through treatments and I pray they are helping!

We remain here for you so reach out at any time!

[jen-cueva]

Hi @bill-jones, I’m sorry to hear about your recent struggles with infection. I’m hopeful that with your excellent team and treatments, these setbacks will be in your rearview mirror.

Take care, and thanks for sharing an update. Please don’t be a stranger and know we’re here for you, my PHriend.

Do you have someone staying with you to help you with your daily activities?