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Nothing going on of particular note. Shrinking. Port flush. Follow-up with eye doc about eye infection. The real news is starting pulmonary rehab. Have any of you tried this? How’d it work for you?
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@brendad53 sorry to hear about the eye infection! I hope you feel relief soon.
Great question about pulmonary rehab. Here are a few links to discussions we have started about this that other members might also benefit from.
Did Cardiac/Pulmonary Rehab help with your exercise tolerance?
VIDEO: How pulmonary rehabilitation can transform the lives of people living with PH
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I continue to feel sheepish every time I ask a question without first checking the archives. But THANK YOU to Colleen for doing the job for me. I just don’t even think of it, and I appreciate your help.
The info is very encouraging. I actually asked my pulmonologist if pulmonary rehab might help. It was my idea. Because my presenting problem is impaired O2 extraction, we’re not sure whether rehab will help or not. But it’s sure worth a try. And everyone who has posted about this previously has had nothing but good things to say about it.
I do wonder about the interface between my “mild PH” and the impaired O2 extraction. The folks in Boston said there was no relationship, but this impaired O2 extraction thing is such a new diagnostic thing that I’m willing to bet they just don’t know for sure yet. So on the chance that there IS some kind of relationship, doing something that folks here say has helped them motivates me to give it a solid try.
And when I’m done, I will buy tap shoes and learn to tap dance. When I’ve had lessons for a year, Colleen, I’ll be coming to see you so we can dance together. 🙂
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@brendad53 helping our members locate and receive the information and support they need is what @jenc and I are here for! You are always welcome to check the archives but you don’t have to. If you ask a question and there is a topic started about it we are more than happy to lead you to the discussion.
As far as the tap dancing, well I haven’t had tap shoes on my feet since I was about 8 so I wouldn’t be very good. I do however remember my two favorite steps, shuffle ball change and back flaps. My poor dad, coming home from a long day of work to having to listen to me practice on our hard wood floors. Gosh, you have unlocked a core memory.
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Hi @brendad53, wow, when are you starting the pulmonary rehab? I did a rehab program when I was first diagnosed. I must say, mine made me exhausted. However, I didn’t feel like it was the best program. It later went out of business.
But, I know many PHriends who have gone through pulmonary or cardio/pulmonary rehab, and although it wore them out, they benefitted. I believe @debbie went not long ago and felt it helped her. I have one long-term PHriend who continues to go years later because she enjoys it. If not, she exercises at home and uses the tools taught at pulmonary rehab.
Sorry about the eye infection. Did you make that appointment yet? Or have you had any improvement yet?
I LOVE that your tap dancing is something to look forward to after your pulmonary rehab! I did graduate after 6 weeks, which was how long the program I was in went. Often people go 2-3 times per week. A good program with knowledgeable respiratory therapists would benefit you the most. I’m hoping you will find it beneficial.
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Yesterday Cullen had a telemed appointment with his headache clinic. KNOCK WOOD he migraines have been under control so this appointment was mainly a follow-up to secure his medication refills. No changes to his meds were made.
Tomorrow is a big appointment with heart transplant at 11AM. Not big in the sense that any procedures or anything concerning will be done. Probably labs, chest Xray and one on one with his cardiologist. For obvious reason we always consider heart or lung transplant appointments his big ones.
On the 28th he sees his renal doctor. Also a big appointment because of his Kidney Disease and he does have some concerns to discuss.
Next month he has a PET CT Cardiac Rest/Stress Perfusion test scheduled but we’ll cross that bridge when we get to it.
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Cullen’s heart-transplant clinic appointment went well for the most part. There was a bit of an unwelcomed surprise in that his cholesterol is high so that medication has been increased. She also kind of got on him about exercising more. He isn’t walking as much since Mellow passed but I’m sure when he gets a new puppy he’ll be up and about more often again. The weather and college classes limit his activity as well. She told him to walk up and down our street a few times every day.
She added an ECHO to his upcoming appointments. He’ll be having that on the 14th. He hasn’t had one in well over a year. Praying for no unwelcome surprises from that.
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Hi @colleensteele, it sounds like Cullen maybe had some of that good ole’ southern cooking while in LA with his brother. I am wondering if that was a cause for higher cholesterol. Do you know if they ate out at the yummy restaurants while he was there?
Exercise? Well, I bet since losing Mellow, that has decreased to zero. Hopefully, the weather will start warming up soon, and he will walk a bit more. Will he be looking for that new puppy this Spring?
Ahh, the 14th is Mine and Manny’s wedding anniversary. That tells me the Echo will go well, but I will keep him in my thoughts and prayers that day, too. That must bring up thoughts from pre-transplant when it has been so long in between, and you will anxiously await the results. It’s in God’s hands; he’s got this! <3
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Colleen
You son Cullen really has a challenge. How is his mental attitude? I don’t think you’ve mentioned how old he is. My gosh he should be on everybody’s prayer list.
My March medical calendar is, thankfully, effectively empty; other that a checkup with my Palliative Care Doctor and visit by my counselor. Moving right along I suppose. Weather wise March came in like a lion two days of snow but now it is disappearing just as I wish my concerns would disappear.
Sorry but I don’t believe in the luck of the Irish. Things were pretty bad for them at the start of the 20th Century. Although I’m an anglophile none of my English relations from that time were still in the British Isles.
Best to all
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@ripple76 thank you so much for your concern for my son! I really appreciate it. He is actually (knock wood) doing well. He is years post heart and double-lung transplant. All of these appointments are check-ups to make sure things look as good as he feels.
His biggest battle is the kidney disease that were caused by his immunosuppressants. He is state 3 but stable and God willing we can keep him that way for a very long time!
Glad to hear that your medical calendar is going easier on you this month then the weather is. We were supposed to get a lot of lowland snow here in WA state last week but we only had one evening of real snowfall that was gone by morning. It has been cold though!
Well, as far as the luck of the Irish goes…I keep hoping for some of it!
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@ripple76 I’m sorry, I forgot to answer your other questions about Cullen. Cullen is 23. He was 6 when he became ill, 8 when diagnosed with PH and 14 when he received his transplant.
He is holding up well mentally and taking college courses on-line but looking to transfer to the UW and start attending in-person. He’s working towards a BA in Psychology with the goal of becoming a medical social worker. I can’t help but brag that he is a straight A student!
Thank you for asking about him!
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Hi @colleensteele, I am so proud of Cullen. I can’t wait to see how well he does with social work. He will make such a caring partner for many in life.
Is he planning to attend in-person classes in the Fall? That will be another huge milestone. What a guy! He is an adult and shows us all can accomplish new goals.
Thanks for sharing Cullen and a glimpse into your lives.
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Hi @ripple76, it sounds like this month’s appointments, you are not overbooked. Do you visit the office to see your palliative care doctor, or is that a home-based program?
Like your snow, I wish these cold days wold disappear. I want more sunshine. I am grateful it’s been partly sunny the last few days. I even put my feet in the cold water this past weekend.
Yep, like the snow, worries and concerns could disappear, too. I relate.
Take care of yourself, Randy, and keep us posted.
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Hi @ripple76, how was your appointment with the palliative care team this month? How long have you been seeing them now?
I hope you and your lovely wife enjoy a wonderful and relaxing weekend.
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PCP on the 22nd. I really don’t know why he wants to see me. It’s just a checking to see how you’re doing kind of visit. He’d do better talking to all my other doctors, then he could tell me how I’m doing. I’m a little irritated. Please excuse me.
Pulmonologist on the 28th. Had to get my cardiologist to arrange this appointment. He will be disappointed because I’ve only lost 15 pounds. Surely there is more that can be done with my body that just losing weight. Will losing the weight take away the fatigue? The dizziness? The loss of O2? I dread this appointment as well.
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Oh @debbie I’m sorry you have those 2 appointments weighing on your mind. I hope they turn out to be surprisingly helpful.
I think no matter what your doctor’s opinion is about your weight I think you should be proud of the 15lbs you have lost. It shows effort. It’s better than 15lbs gained, right?
Maybe try to create a list of questions for the appointments that you can distract them with if they linger on discussing your weight.
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Hi @debbie, I’m sorry that you have some dreaded upcoming appointments. I agree with Colleen that you should take pride in losing 15 pounds. It’s tough to lose weight, especially with PH and our limitations.
I love the idea from Colleen to make a list of questions. Is this cardiologist a PH doctor or not? I am concerned that you feel they only focus on your weight loss.
Please keep us posted and let us know how we can best support you as you prepare for these two dreaded appointments. Hugs are coming your way, my PHriend.
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Thanks for the encouragement. From reading an article, I am going to present the Pulmonologist a list of goals. So maybe he can focus on what it will take for me to reach these goals. And, of course, with the goals will come questions. I can’t believe I’m saying this but I want some medicine. I want to have more energy, less fatigue. Gardening season is upon us, and I am a gardener. My husband doesn’t want me going out there alone anymore. I want to be there alone. I have my phone if there is any trouble. I’ll move a chair out there. That is something I want to be able to do.
My cardiologist is part of the PH team. She’s great. I’ve had more success with her than any doctor so far. My heart is looking good. Go for an echocardiogram on the 30th. Then we’ll really know how good things look. Don’t need a right cath this year – YAY!
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@debbie everyone deserves a hobby and alone time. Have you considered getting a medical alert system? We have a discussion going about this if you would like to have a look.
Do You Have A Medical Alert System? -
Hi @debbie, I wanted to follow up and see how your appointments went this month. I know you had some anxiety and not looking forward to these appointments. However, you had a plan for your pulmonologist. How did the PCP and pulmonary appointments go?
Today is your Echo, so keeping you in my thoughts and prayers for some positive results, maybe something that will help determine if you need medication and what may be helpful. Yay for no RHC this year!
I hope my PH doc will do an Echo instead of an RHC this year. Please let us know how things went. I hope that afterward, you enjoy a nice lunch or dinner.
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How did everyone do with your appointments this week? I only had my psychiatrist appointment. It went well; she increased one of my medications to help my anxiety. I am supposed to pick it up today from the pharmacy.
I hope y’all enjoy a great weekend and do something that makes you happy! You deserve it!
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@jenc I was going to ask how that appointment went. Glad to hear it went well. I’m curious to see if you notice a difference with the increase without side effects.
I hope you and Manny have a nice weekend!
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Hi @colleensteele, thanks; I’ve noticed some more gastro side effects over the weekend, but hoping that will pass within a few days. I’m sure it’s from the increase.
We had a lazy day on Saturday with the wet weather. But Sunday, we were more productive, and the sun appeared enough so we could do a bike ride. I love the freedom! For the newer members, I ride an E-bike with my husband with a backpack with oxygen.
How was your weekend? I hope you, Brian, and Mr.Cullen enjoyed a relaxing one.
Isn’t Cullen’s Echo tomorrow? I’m praying extra for the results to be good news. Will y’all have to be there early?
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Hi @cdvol3gmail-com, so sorry to hear that you and Dick have been sick again with colds. I bet it’s this crazy weather being so wishy-washy making all sick. But I hope you both are back feeling like yourselves ASAP.
How is Mr. Cloud doing with you both sick? I bet he’s a great cuddle bug and wants all the love.
Thanks, still having some gastro issues, but usually, by dinner, they are not bad, so hoping that’s the case tonight. I appreciate your sweet thoughts my sweet PHriend, sorry I haven’t been in touch the last few weeks were stressful around here.
Love, hugs, and feel better prayers are coming up your way.
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Hi All, just catching up. Both Dick and I have been sick and trying to get rid of these colds.
Debbie, I hope your appointment coming up will go well and bringing your questions written down as Colleen suggested will really help. Good luck and think positive thoughts. Congrats on loosing 15lbs ! That’s GREAT!!!
Colleen, my heart out to you as you, Cullen and family weigh through these appointments Cullen has. Prayers and positive energy for upcoming renal follow-up. I thinkn I had the same lecture Cullen had from my Pulmonologist – EXERCISE more. When it is cold, rainy and the wind play against you, it is hard to be motivated. Having a new puppy does make you get out there. How proud you and Brian must feel as Cullen looks ahead to UW and focusing on medical social work. What a gift he will bring.
Jen, happy anniversary early for you and Manny. What a gift you two have been for each other and the gifts will keep on coming for years to come. Sending hugs full of love always.
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@cdvol3gmail-com I’m sorry to hear your colds have been lingering. I caught one while Aidan was home but luckily it was real bad just one day then got better every day after that. How long have you been fighting yours? Praying you both feel relief soon!
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Hi @cdvol3gmail-com, once again, despite your challenges with this cold, you continue encouraging us all in the forums. That’s so empathetic and why I love our forum members so much!
Your heartfelt words of love and anniversary wishes are much appreciated. Take care of yourself, and I am sending you and Dick light, love, and feel better prayers.
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Hi @cdvol3gmail-com, I just wanted to follow up and see that your March has improved since your last update. How are you and Dick doing this week?
Any plans for the upcoming weekend? Take care of each other, and know we are here to support you when needed.
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Thank you Jen for checking in on me. March has come in like a lion and is going out like a lion and he ain’t no friendly Leo!
Colds are gone … then came issues with my stoma bleeding then direahea then, what I thought was a good old fashion urinary track infection Sunday night – took antibiotics for that … got worse. Monday found out it is a kidney infection, re did labs today to see if I needed an infusion – everyone is busy, so I have nit heard. Arrived home and the Water Dept said we didn’t pay our bill – didn’t get one. Dick is off with a check and I am trying to make an appointment with the ostomy nurse – April 12th (when she gets back from vacation).
Okay, on the up side. Cloud iscalmost 8 months old and he has turned into a heart breaker. He is very dear, very sweet, very smart and still a sneak!!! He no longer grabs and runs under the piano and refuse to give back. He grabs and proudly shows you he has it then drops it waiting for you to leave the room so he find something else. He really has turned into a real treasure, a hand full but who wants empty hands?!
Going back to bed very soon and hope to peeee – not in the bed though!
I guess everything I wrote is acceptable 😌 but if not someone can edit what ever they like. Hey with everything that goes crazy in our bodies what’s a little pee or no pee etc?
Love to you and Manny and, of course Zoe!! I have been on the forms but, honestly, have not had any spare energy. 🫣
Love and lots of hugs 😊❤️🐶 paw hugs from Cloud to Zoe.
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Oh my, @cdvol3gmail-com, I hate to hear about March continuing to roll; through your home (and body) like a lion! You and Dick both had just started to recover from that nasty cold.
That’s not OK and frustrates me for you, my friend. Can they not send an ostomy nurse who is covered since you are bleeding? Do they want you to wait until April 12th?
And now…awaiting lab results!Geez, the water bill, too- I’m sending some positive vibes, thoughts, and love your way. I know you will be ready for March to be over.
Mr.Cloud sounds like he’s keeping your spirits up. No doubt he’s s stinker, but full of love and joy. Zoe will be 4 months on April 8th. She slipped through the front door this morning as I opened it to get my Amazon package. You should have seen me frantically calling and finally enticing her with a puppy cookie. That was my exercise this morning- Happy Monday!<3
Never apologize for not popping in; usually, I start worrying when I miss one of y'all for too many days. It's the mom in me. Hehe.
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Hi sweet friend! Jen, it is always uplifting to receive one of your messages – you can always find domething to say that will make us all smile!
I left a voice mail yesterday to the gate keeper to say I needed an ostomy nurse! She called this morning and I will see the nurse tomorrow.
The kidney infection is not better so I have a call into them as well.
March will be over soon!
Cookies do the trick in getting Zoe and Cloud back but the instant they escape, your heart stops!! So glad the cookies work – for Cloud it is cheese that will do the trick.
Love and warm hugs – I hope you do not have too much on your calander this week.
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@cdvol3gmail-com what a month you and Dick have had! I was hoping things had improved.
Is your kidney doctor with the UW as well? Cullen sees them in-person tomorrow morning. Praying they help you quickly recover from the infection.
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Thank you Colleen for your prayers.
I do not have a kidney doctor specifically. Mine died a few years back and I have not had any issues for a long time. Would you be comfortable in giving me Cullen’s doctor’s name?
Having more blood work done tomorrow to see where I am.
My prayers and best outcomes for Cullen tomorrow. Big hugs to you both!
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Prayers are with Cullen for a positive visit with his nephrologist today, @colleensteele. Please let us know how it goes.
Take care of yourself, too. Drink your water, eat, and rest. SBUX runs are also a mandatory break. 😉
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Hi @cdvol3gmail-com, so grateful that you will see an ostomy nurse today. That “gatekeeper” tactic you use is pretty helpful.
Yes, thankfully, your March Madness is almost over. I hope you hear back soon about your kidney infection so that the next step can be decided.
Too funny that Zoe is also a cheese lover, so whatever I have that she can have worked for her. She is simply food motivated. She must get that from her dad, hehe.
This week isn’t too busy, thanks. Today we are staying home in sweats and a tee. So maybe get a few things around here done when Zoe is napping or in her playpen.
Take care, and please let us know how it goes with the ostomy nurse later today.
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Thank you Colleen for asking. Dick came down with this a week ago Sat and I followed last Sat. Getting better but it always takes me longer to get over these things.
Tomorrow is Cullen’s ECHO. I pray results are all good! You will also be in my thoughts. Warm hugs.
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@cdvol3gmail-com and @jenc you are both so wonderful for wishing Cullen well during his ECHO. I freaked out a bit and checked his MyChart because I thought it was scheduled for next month. It is, he will have it on April 14th. That is my fault. I did say in a previous post that it was this month.
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Hi @colleensteele, sorry to scare you yesterday morning. I have now changed Cullen’s Echo to April 14th on my calendar. @cdvol3gmail-com and I sent some extra prayers and positive thoughts a month early.
Is his kidney doctor appointment next month, too, not the 28th of this month, BTW?
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@jenc his kidney appointment is March 28th.
No worries about startling me. I would rather have the concern and double check the calendar than miss an appointment. You never know…you could have been right and I somehow spaced the appointment.
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